CancerIsAWord

To Fear or Not to Fear... One Really Doesn't Have a Choice.

2011-10-02T19:58:00.004-04:00

Yep. It's there. It lingers. And when you think it's gone (and that's when you're not thinking about it at all)... it's just building up to an arbitrary threshold that, when met, brings it right up to the front lines of your life all over again.

Mostly it's reading about other people relapsing. Sometimes it's being dumb and 'just catching up on the recent research' on PubMed. Whatever sparks it, the 'holy shit, it can actually come back' feeling resurfaces just when you feel you've conquered it.

So if anybody sees me obsessively checking my neck or thumping on my chest (no, I don't think I'm Tarzan - and no, I actually don't have any clue what I'm supposed to be listening for) ... that's why.

I may eventually get over it or I may eventually go mad.

J

A Year Goes By / Light the Night: Part Deux

2011-08-05T09:52:00.004-04:00

I am officially 1 year in remission TODAY!!!!

The port scar is healing, work and home life are now taking their rightful places as the biggest stressors in my life, the occasional paranoid neck-checking seems to be the only psychological damage remnant from my ordeal (and hey, if that's all I'm going to walk away from this with - I'll take it).

Again, I'm driven to give back to one of the organizations responsible for the survival of both Will and me. Without their support and funding, I know that treatment for Hodgkin's wouldn't be nearly as hopeful as it is today. To illustrate this and bring it a little closer to home: Through the Leukemia and Lymphoma Society there are currently THREE FULL-TIME researchers in the Burgh who have their research on blood diseases funded. THREE in one city alone.

A lot of generosity is responsible for the lives of quite a few people out there and I want to make sure that continues. Please consider supporting me in the walk this year. The spokesman (Dexter's Michael Hall) this year had a great quote: Walk as if your life depends on it - because somebody's does. I plan to do just that.

Let's make this the first cancer to be completely eradicated!!!!!

Leaving the Port Behind

2011-06-28T16:38:00.004-04:00

If the highest aim of a captain were to preserve his ship, he would keep it in port forever. ~ St. Thomas Aquinas

I actually had the irrational feeling these past few days that maybe the port should stay in. Suddenly superstitious, I started thinking 'maybe the evil cells are just waiting for the port to come out so they can sneak up and have another go'. Oddly enough, and completely randomly, I ran across the quote above. Yeah, it's completely unrelated but it reminded me that this experience and getting through it alive has always been about putting your head down and moving forward. Now, when things are going so well, is NOT the time to hold on to fear.

I won't play-by-play the surgery stuff from today because truthfully - and I'm not being lazy because of being tired and a bit in pain here - truthfully it wasn't that interesting. Maybe I'm actually so accustomed to procedures that nothing seems outstanding to me - but I really do think today was pretty mundane.

I will say one thing, though. Perhaps it was only some weird side effect from the twilight anesthesia wearing off (at least that's what I'd like to believe) - but when I woke up and realized it was all over, the emotional reaction was... well, completely and powerfully unexpected.

I remember my post from after chemo when everything was supposed to be over and life was supposed to move on but it felt like it really wasn't. I think for me that THIS was finally the real end - even though I didn't really know that going in. Waking up and realizing that I was suddenly, 100% normal (pipe down, peanut gallery - no snarky comments needed there) - well, it was like all the emotions from the past two years just broke through some kind of floodwall. Happy tears - and lots of them. And a feeling like we could finally move on as a family - a healthy and (relatively) young family.

It was sad to know that this might be the last time I see Dr. Surgeon - one of the people who played a HUGE (maybe even bigger than Dr. Oncologist when it all comes down to it) role in saving Will and me. I can't imagine he won't be retiring soon as well. Hopefully I'll hear about it when the time comes and be able to offer him a virtual standing ovation as well.

Maybe someday I'll figure out what to say to someone who saved your life.
I'll miss ya' Doc.

Port: You will NOT be missed. :)

Now for some more sleep and maybe a few painkillers.
Then, on to whatever comes next. ;)

xoxoxo

Doc Retires

2011-06-08T21:57:00.003-04:00

Ok - I'm sure everyone recognizes the guy in this photo. Right? Right??

I spend my free time in the summers on movie sets. The process and the culture fascinates me. So I participate. I observe. I stay the f- out of the way. There are people on sets that you jump out of your seat for to offer them a cleaner, more comfortable spot to rest their bum. You walk in a series of broad arcs - perhaps even walking straight into something - to allow them the right-of-way. You do not make eye contact - you do not speak to them - it is as if they have descended from Mt. Olympus and you are lucky to have them sneeze on you or - gasp - offer up a polite head-nod. Out of reverence, out of respect - we pay them lots and lots of money and worship their looks, their style, their private lives... and when they do their job well, they get a big party and a heavy trophy - some global TV time to thank their mini-poodles for their success - and a lot of expensive swag.

The man on the right in this photo is basically responsible for the presence of everyone on the left. And even though that is a pretty big deal, and though he's probably done the same for lots and lots of other people - for some odd reason he's not famous. You probably won't ever hear his name on the news, you likely won't see him heaving a gaudy trophy into the air, and he won't be showered with gifts and baubles. Instead, he is quietly exiting stage right and will slip off into retirement having saved the lives of probably dozens of people.

I guess part of me is slamming society for having our priorities all screwed up while the other part of me is just sad to see him go off without the fireworks I know he deserves. So I'm putting his photo up here and maybe y'all can make me feel better and give him a standing O from wherever you are.

And let's all be thankful for people who without concern for what they will receive in return, dedicate their lives to protecting the lives of others.

From the Good People at the New England Journal of Medicine

2011-05-11T16:03:00.000-04:00

... just to follow up on the stacking evidence that no one should ever, ever listen to a Dr. From-Hell:

http://www.nejm.org/doi/full/10.1056/NEJMra1003733

Excerpt:
"Given the relatively high frequency of Hodgkin's lymphoma in young adults, it is not surprising that it is one of the more frequent malignant conditions discovered during pregnancy. Efforts to determine the stage of disease in pregnant patients are somewhat restricted by the need to avoid computed tomography and positron-emission tomography (PET), but abdominal ultrasonography can be used to detect subdiaphragmatic disease. In pregnant patients with asymptomatic, early-stage Hodgkin's lymphoma, treatment can sometimes be delayed until after delivery. Although radiotherapy should be avoided during pregnancy, it is relatively safe to treat patients in the second and third trimesters with ABVD. In selected patients the use of vinblastine alone can help control symptoms until delivery, at which point definitive therapy can be pursued. Patients in the first trimester pose a more difficult problem. If treatment is required and the patient does not want a therapeutic abortion, the successful completion of pregnancy without fetal malformation is possible with ABVD or similar regimens.35"

... I feel like getting a copy of this journal and making an appointment with the good old OB From Hell... and bringing my son. Let him try to dispute either one.

'nuf said.

Port of Hell: Part II

2011-03-09T19:56:00.005-05:00

That's a pic of where a port SHOULD be. Mine's a bit lower (ha, ha Dr. Surgeon - you're a riot).

I probably shouldn't be so hard on my port. After all, it probably kept me from having arms that would make casual acquaintances suspicious I may have a heroin addiction. But now that its primary purpose has been served, it would surely make me happy to be RID OF IT.

Firstly, because it's gross to have a giant lump under your skin. Secondly, because I'm sick of nurses who can't manage to 'find' the GIANT LUMP under my skin and end up stabbing me in the chest. But most importantly, because I'd like to believe him when Dr. Oncologist says he's not worried about anything..... Cuz I'm thinkin: 'If you aren't worried about anything then geez, doc - is the infusaport manufacturer payin you some kind of stipend to keep this thing in?'

Saw Doc today and naturally I have a hideous upper respiratory infection. I get sick a lot, but I'm not ALWAYS sick. However, I AM always sick when I see Dr. Oncologist. So this time he asks all kinds of suggestive questions like "So.... how long HAS this been going on?" and "Does it seem to ever get better?". Like I'm the kind of chap who is just going to sit quietly with a permanent respiratory disease and not complain to anyone about it - come on, Doc - you know me better than THAT!

So I convinced him that on some occasions my immune system DOES try to work and he was happy - ish.

He WAS happy after doing his high-tech 'thumping of the chest' thing commenting on how it sounded 'nice and hollow'. That beats the dull 'whump' sound we used to get when good 'ol sternum was covering up a big-ass tumor.

He was also happy with my swollen lymph nodes - all four of them now - saying they are "innocent". Under whose jurisdiction, I'm thinking. I'm all about sentencing those little buggers to death - where's Dr. Surgeon???

But he ordered another SED rate and commented that one of my last ones was 'high'. I said 'how high is *high* doc?'. He said 20. Mine was 54.

Mkay - guess that qualifies.

'But I'm not going to do anything about it' he says with a chuckle.
Appropriate response?
I didn't think so - but Doc has never been wrong so I half grin back in seeming agreement that my blood falling to the bottom of a test tube like my red cells are made of lead must truly be humorous. Perhaps I'll earn a belly laugh if it tops triple-digits this time?

So enough of my free-flowing thoughts - back to stupid PORT.

After all of that merry-making and assurances that everything looks great I express a keen interest in ditching the port and get the same answer I've gotten for ... 8 months now? ... "Let's talk about that the next visit".

An inventive mind can come up with all kinds of nasty reasons to leave a port in. The one I tend to land on and can't get my mind off of is probably the one that'll haunt every Doc appointment I ever have for the rest of my life.

But it gets better, right?

*shiver*

Port of Hell

2011-02-25T05:43:00.001-05:00

Dear Dr. Surgeon: I love you but I honestly hope that in your next life you come back as a woman.

So I still have this stupid port and when you have a stupid port you have to get the stupid port flushed once a month with saline (the foul stuff from the toxic pre-filled syringes) and heparin so that it stays .... in whatever condition that stuff puts it in.

That's a giant pain.

But you know what is a BIGGER PAIN??? The pain of having a new nurse who doesn't know what she's doing stab you repeatedly in the chest with a giant needle while trying to find your "unusually placed" port. It's especially painful when you're sore from overdoing it at the gym and she sticks the damned thing straight into a muscle and INJECTS THE SALINE. It set off a charlie horse that ran from my sternum all the way up to my shoulder. My eyes started to water and I told the nurse in no uncertain terms that she did NOT hit the port and if she didn't remove the needle I was gonna' have at it myself and damn whoever gets in my way.

I got a different nurse to do the flush. She came in and asked if something was bothering me in that "have you had a rough day, sweetie?" kind of way and I explained to her that Norman Bates on the other side of the room was the one responsible for the streaming tears still streaking down my face and that as soon as my head stopped pounding I was going to jump the girl. Probably a bad plan on my part since she outweighed me by a cool 150 lbs or so. I didn't get the chance to try because she left - maybe to go try and kill a less spunky patient.

On the brighter side, the second, less sadistic nurse was one of my nurses from chemo and she recognized me and was all excited that my hair came back all little-orphan-annie-curly so took me back to see all the other chemo nurses I had last year. It was actually fun to visit with them and chat about the changes they've made to the rooms and remember fondly my Liberty Spike hairdoo.

No offense to the onc nurses - but I never want to be their patient again! ;)

Time to close the book on this thing and the port is that last remaining remnant. It is time to send this thing back where it came from. First Dr. Oncologist appointment coming up in March... $10 to everyone who calls him ahead of time and puts in a vote for speedy port removal.

:)

J

Happy First Birthday, William!!!

2011-01-27T21:32:00.003-05:00

Happy birthday to our beautiful miracle. So glad you are here with us, healthy and strong! We love you, Will-Will!!!!

The NeverEnding Story

2011-01-07T12:15:00.002-05:00

They are they TESTS that never end...
Yes, they go ON AND ON, my friend!

...

Squaring up for a second (and final? oh please, make it final) small intestine biopsy next week.

Oh, I can't WAIT!

Maybe sarcasm is my way of dealing with incapacitating rage generated by having to do yet another 'minor surgery'...

Whatever works.

Wish me luck.

Hope everyone had a good holiday! This year was DEFINITELY better than the last... may they keep getting better and better for many years to come!!!

xoxoxo

J

Life After Utter Chaos

2010-11-20T22:04:00.003-05:00

So what do you do after you get to the top of your escalator-of-horrors? Well, from what I can tell, you get up there and look around at all the possibilities life has for you, you close your eyes and take a deep breath (as deep as possible after the bleo knocks your lungs out) of calmer, cleaner air... hit that jagged-toothed platform at the top, lurch forward, and go ungracefully stumbling into the next chapter of your existence trying not to fall squarely onto your face.

The scariest thing? Lumps. Yep - lumps. They don't write anything about those in the After Hodgkin's Handbook but they should. Because they pop up out of nowhere, scare the #$%#$ out of you, and then send you panting into your Doc's office to be told that (unlike the FIRST time) they're perfectly normal. What? Normal? Really?! Yes. Apparently now lymph nodes can swell up and persist over just about anything: the flu, bronchitis, heck - even a head cold. And guess what else? If they do your blood work guess what can happen? Your SED rate can go sky-high just like when you had Hodg. Of course, WBC count will also be high if you're sick... so really you have no proof from anything or anyone that you HAVEN'T relapsed. You just have your Doc saying not to worry. Comforting if you're the kind of chap who likes putting on a blindfold and jumping off a rooftop toward a guy on the concrete sidewalk saying "don't worry - I'll catch you".

Just when you've reached "peak freaked-out" though, the little buggers snicker at you then disappear. It's like a lethal game of Whack-A-Mole.

The bright side is, though, that even the most cynical of us can't help but be a little touched by the thought of a second life. Where once we may have turned it in for the night now we party into the wee hours of the morning (maybe a few too many times in a row - but WTH) to spend time getting to know new friends. We spend time on relationships and money on adventure and experience because more than anyone we know that other than a well-ventilated standard-issue paisley gown they are the only things you take with you into a hospital bed. I may not live differently than I did before - I'm just not a 180-degree kind of person - but I live with more determination - more vigor - and zero tolerance for letting an opportunity pass by.

How much is too much living? I'll let you know if I ever reach my limit. ;)

xoxoxoxo

Walkin the Walk

2010-10-06T12:35:00.001-04:00

Before I continue, let me start by saying that those of you who think you aren't invited to our big fabulous celebration because you haven't received an invite yet are wrong - we haven't figured out when we're having it yet because our HOUSE STILL ISN'T DONE (hear that, builders?!) Yes, nearly EIGHT MONTHS into construction on our whopping TWO ROOM home addition and we are still not moved in.

Sooooo... It looks like due to inclement weather on the horizon, we're going to have to add a few more celebratory items to the list (Will's first birthday, RJ's second birthday, Our 5th Anniversary, and whatever else good happens between now and spring) and delay the partying for the lovely spring weather. Sorry about that. If you write to me privately I'll give you the name and phone number of our builder where I'd be happy to let you lodge a formal complaint.

So back to walking. As many of you were rudely mass-email-informed by me, I walked the Light the Night Pittsburgh Walk for the Leukemia and Lymphoma Society this past week (thank you so much for all of your donations and support!!!!!!). If none of you has participated in these kinds of events before because you thought they were a bit silly (like I always have) - give it a second chance and you'll be surprised. No, the act of walking a ridiculously easy and short path through a city doesn't by itself accomplish anything. And no, giving someone money to 'sponsor' them to walk in a circle doesn't accomplish anything all by itself either. But if everyone could have joined me this past week you could have all seen the magic of what these events can do.

My own team was an amazing example. There were a handful of us (less than what I thought should be representing Heinz when the walk was at HEINZ stadium - but that's beyond the point because this was a great case for quality over quantity) and Dan asked around about why my fellow team members were there. Had they known someone with lymphoma? Did they have it themselves? Nope. They just showed up to help. On a cold, rainy awful fall day in Pittsburgh the other members of my team were there because they just felt the need to be there for those of us who needed them. That kind of community support, the comraderie of your neighbors coworkers and friends - that's not something you can see so clearly without these events. Every survivor and griever there felt the warmth of the hundreds of people like those on my team who were braving the weather only to show they care about others... and that's magic. And there are those angels, again. So if you get another chance to support one of these or participate in them, know that they ARE worthwhile and that they DO bring people together in addition to the funding they provide for good causes.

And for those who have been wondering if it's too late to donate, know that it is never too late and that the Leukemia and Lymphoma Society has about a billion different ways to do it posted to their site.

And what else have I been up to?

Honestly, just moving through my days occasionally obsessively checking my neck. And kicking myself for not checking when I was first done with chemo to establish a proper baseline. Now there are two little tiny lumps and I'm thinking "were they there before"? Yes, they probably were - but now I'll have to wait for the next appointment to find out for sure.

So a tip to anyone finishing up chemo - check for lumps now so you don't have to think about them later. mkay?

Wonder when the paranoia ends...

xoxo

Jennie

ALL CLEAR

2010-08-17T19:47:00.003-04:00

No clever titles - no long-windedness, just a bit of good news: Ms. Dr. Surgeon Jr. called yesterday and said "Don't worry - everything came back FINE".

:)

Best news EVER.

I HATE MY GUTS

2010-08-11T22:08:00.003-04:00

Well, today I got to have biopsies taken of my small intestine where there appear to be ulcers.

Unpleasant.

Suffice to say it's going to be a loooooooooooong wait for the results (they could apparently be caused by just about anything) but given that the problem is the small intestine, cancer seems pretty unlikely - so at least that's something.

Honestly, someday I gotta' get a break. My IV bruise from last week hasn't healed up and here I am with another one.

Cool part: the doc today was the daughter of my surgeon. Ah, small town life.

I'll post as soon as I have news. Til then, I'm taking bets on what my next lifelong ailment will be. Anyone willing to wager on Tourette's?

#@$@#$@#$$#%#@!!!!!!!

xoxoxo

J

PETS Bite.

2010-08-04T22:01:00.002-04:00

Quick post and then I'm going to use up one of my last Ambien from my good old up-all-night-itching days and try to sleep. The PET did not behave well and showed some big shiny spots in my lower abdomen. Doc didn't seem to understand it and went back down to radiology to see if they had "over-read" it. Nope. Seems like they really do know how to do their job (unfortunately) so it's off to another specialist for me since my doc is more of a "blood" guy than a "GI guy".

Of course this all took FOREVER so I had to blow some of what little remains of my vacation days (the rest were spent on what I like to call my "chemo cruise").

Good news: No more Hodg. Bad news: well, that's not really clear just yet but I think it's time to take the PET out back and shoot it.

Hope to report better news next post.

Thanks to the Facebook crowd - in spite of all of this ya still made me smile. :)

'night.

- J

A Friendly PET?

2010-08-02T11:40:00.004-04:00

Nope - we didn't get a puppy yet - waiting for the kids to get old enough to start begging for one first. We DO have a small raccoon who has been hanging out in our front yard lately, but we're not really calling him a pet yet until we can figure out whether or not he has rabies...

But the PET of interest today is my first post-treatment PET/CT scan - the one I dragged my sleepy butt to at 5am (showing up even before the radiology staff). I sat around for a while waiting for them to arrive and busied myself filling out "the form" that I knew they would bug me about as soon as they got there. They were way impressed that it was already completed when they checked me in, BTW. I'm SO type A...

The nurse that took me back to do the IV/bloodwork was in a sour mood... and that's not something I like to see when I arrive ready to get an IV put in. Sure enough after complaining about just about everything that had happened so far that day (she had a remarkably long list of complaints for someone who only just got to work and WASN'T the one with cancer getting stabbed with a needle) - after a long stream of complaints she bruised the bejesus out of my left arm and then moved on to the right where she placed a successful IV. She joked that I had been "hiding" the better vein on her... but I think she was only half-joking and that she will probably add my 'hidden good vein' to her list of complaints to burden her next customer with.

Super-sized nurse was on duty today and took over from there, giving me my tall styrofoam cup of spiked Tang to drink (the first of two) and injecting me with radioactivity. Then it was nap time for Jennie - who requested a wake-up call to drink the second cup of spiked Tang (which is supposed to be polished off midway through the nap - go figure those logistics). Nobody ever came to wake me but thankfully my years of being a lab tech paid off and I woke up to my internal 30-minute timer like clockwork and drank the Tang. For the first time, I found I could NOT drink the rest of the Tang. I got about 2/3 of the way through and my stomach screamed SSSSTTTTTTOOPPPPPPPPPPPPPPPPPP!!!!! So I did. And when they came in to get me for the scan, do you know what? They didn't care! Now I'm kinda ticked that I had forced down the full amount every OTHER time... but at least I know for the future.

The scan went pretty much the same as always except that this time the iodine seemed to be more potent and I started thinking about whether or not the iodine is any indication of what it is like to be the head of a lit matchstick. The weirdest part, though, is that after the burning stopped I really, really, REALLY thought I was gonna hurl. You'd be surprised how strongly you can fight that urge when you're strapped on your back in a small tube and you know darned well you can't switch position... that would have been icky... but thankfully that "sensation" passed as well. Stupid Tang.

Now I get to wait... and wait.... and wait.... for an eternity until Wednesday when I find out the results.

Gosh, I hope it's MY DOC that reads them to me this time... I don't think I can handle another visit with Doc Jr.

XOXO

J

Milestones

2010-07-07T23:13:00.006-04:00

Today I reached probably one of the biggest milestones of this whole fiasco: the end of my treatments. Why no exclamation point? I thought about it – I really did – and I wanted to enter one because I know that it seems like there should be one there. But it just didn’t seem to fit. It’s not that I’m not happy – I’m ecstatic that I won’t have to have a needle jammed into my chest anymore (though the port will stay in for quite a while yet for blood work and “just in case”). I’m overjoyed at not having to ask my poor father to wake up after five hours’ sleep to drive me darned near 50 miles to my treatments with my toddler screaming in the backseat (for which I only had to endure half the trip while my dad had to turn around after dropping me off and brace himself for the remainder). I’m not going to miss feeling like I have a really bad hangover for half a week twice a month. I’m not going to miss having to tell people at work who depend on me that I’m going to be an unreachable pile of listless green goo for three workdays in a row. I’m looking forward to getting back in shape. There really are a lot of reasons for a great big rockin’ exclamation point after saying “the end of my treatments”.

Ok – I’ll just do it so you all believe what I just said. I’M DONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! *throw in a mental happy dance just for good measure*

Ok so why am I Little Miss Party-Pooper? Maybe part of it is because I set myself up for all of this to be anti-climactic when I read too much on the internet about how people get depressed after their treatments are over. Don’t get me wrong – I’m definitely not depressed – but I was so prepared to BE depressed I think I dampened the end-of-chemo experience. Most of it, though, is because it’s a weird milestone… one that looks to everyone around you like a clear delineation point between being “sick” and being “well” – when to you it is just not that clear.

I’ve now entered the happy ranks of those who can’t call themselves “cancer patients” any longer but who also cannot officially call themselves “survivors”. I survived chemo – sure – but I’m thinkin’ that wasn’t really the objective here… So although life can go back to “normal” it will still be filled with blood tests, exams, scans: constant reminders that I am under observation – that I am waiting for it to come back – or not – whatever the case may be. Five years (minimum) of that is a formidable purgatory to be staring down. I’m told your fear/paranoia of relapse decreases over time. I’m hoping those folks were being truthful.

There’s also another, unexpected, piece of the experience that dampens the mood a bit – as it would for anyone feeling human…

This chemo treatment was like all the others – arrived and got the port “accessed” by Nurse Stabs-A-Lot. I forgot my sour patch kids so tried a trick with the “saline” to prevent myself from tasting it: I held my breath. My theory was that since it’s going directly into the bloodstream then it’s probably the exchange in the lungs causing the flavor/odor/instant-gag-reflex experience and so if I just stopped breathing I wouldn’t be able to taste it.

Solid theory if I didn’t have to continue breathing again at some point. But I did – and it was like it had all concentrated into one giant evil nastiness that almost made me introduce Nurse Stabs-A-Lot to my morning breakfast. I won’t try that again.

So I get a private room for my final treatment – which is cool. The nurse who took me back there told me it was so that my husband and I could have some private time in there when he arrived. There was no innuendo in his voice, but I had to wonder what on Earth he was talking about.

I get comfortable in my ‘private’ room, Dan arrives with lunch, we eat (and nothing else), watch TrueBlood (maybe that’s why they stuck us in a secluded corner), and finish my treatment.

I got to meet every nurse on duty today because my call button was stuck down. I took the opportunity to tell them it was my last treatment. Don’t know whether it was the pleasure of my company but each one frantically tried to unstick the call button while trying to pretend like they were paying attention to me before giving up and leaving. :)

I did get a lot of congrats though and my fantastic hubby to whom I owe my sanity and perseverance through all this wore his “My Wife is My Hero” shirt – and I was feelin’ pretty darned good. The last med ran and I was ready to head home and never get chemo again (knock on wood…knock on wood…knock on wood).

Dan had to run to the restroom so I waited outside of it for him next to one of the rooms where patients get a private room with a bed because they are there so long for their regimen. Usually they are unable to walk too.

I glanced over and locked eyes with the girl who was in there. She was beautiful – not that that should matter one way or another – and she was my age. And she wasn’t going to be walking out of there the way I was any time soon.

That is the part of this that I will never be able to put behind me: I’m getting in my elevator and zipping back up to the top of my scary cliff so fast my ears are popping – and what I’d really like to do is collect everyone that was down there with me, stuff them in my elevator, and bring them back too. And I can’t. I realized today that some of the people I’ve sat with – joked with – suffered with – over the past six months may not ever make it back to the top.

I’m not one to believe that cancer is some sort of punishment. There are too many sick babies and too many healthy violent criminals out there for that theory to hold with me. I see it instead as a problem needing to be solved. And solutions need resources. Which brings me to my final few paragraphs…

Despite things that may darken the occasion a bit, there are definitely a zillion reasons to CELEBRATE. And since we haven’t thrown one in longer than we care to remember, Dan and I are thinkin’ we need a big freakin’ par-TAY for the occasions that we have passed over and ignored while all of this was going on. I am hereby announcing that we will be throwing:

A We-sold-our-house-found-awesome-jobs-housewarming-got-pregnant-30th-birthdays-had-new-healthy-baby-boy-5-year-anniversary-clear-PET-scan-new-home-addition-grand-opening-end-of-chemo PARTY!!!!!!!!!!!!!!!

At which we will NOT be accepting gifts for any of the above-mentioned occasions but will ask anyone who wants to give us something special to make a donation to the Leukemia/Lymphoma society (http://www.leukemia-lymphoma.org/all_page?item_id=8592)

Seeing all of our good friends again (finally!) and helping to ensure that someday no one will ever have to go through this again… well, that’s cause for a lot of exclamation points! So keep an eye on your mailboxes (or email boxes as the case may be) for an invite later in the summer/early fall!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

There are a million people to thank and I always try to do it at the end of blog posts (and yes, I will be continuing this blog because this journey is not yet over) but this time I want to call some folks out who have been my lifeline and have enabled me to not only conquer the biggest obstacle I’ve ever faced but to at the same time maintain my full-time work, my hobbies, my time with my children, and my ability to keep myself in evil-cell-fightin’ shape:

My amazing and wonderful loving husband Dan has been my courage, light, hope and strength. He tirelessly supported me – taking on much more than any one person could handle or should ever have to – and was by my side every fearful step I took. I love you.

My parents - without their help we surely would have crumbled under the weight of the timing and financial responsibilities of two small children, medical bills and a house under renovations. There never were two more selfless and giving people and I have been so fortunate to have you. Love you both.

Aunt Lori, Uncle Chris, Uncle Brent and Aunt Lisa who gave up their vacation time as well as time with their own homes and families to repeatedly come stay with us and help with the home and children. You are all so wonderful to us we’ll never be able to repay you. But we’ll continue to try. :) Love you.

Lauren (again) for letting me feed vicariously off of your courage during your own journey. We both made it back to the top – hope you’re enjoying the view as much as I am. :)

The Amazing Allnutts and DeWalts for continuing to be some of our most cherished friends and putting up with our not being in touch nearly often enough – we will remedy that going forward!

Mom and Dad Bushnell and “Little” Brother Kevin :) for their constant concern and support

Auntie Annie and Uncle Jerry for making sure I had a good supply of healthy cancer-fighting nutrition :)

Auntie Rosie – with all of the stress you’ve had yourself you always had us in your thoughts and prayers – we love you!

My best friend Jess and her hubby Pete - for just being you!

Chad, Missy and Andrew for lending a hand when it was most needed and taking wonderful care of our baby.

Mark, Jeri, Ashli, Nathan, Pat – We hope to now be able to see a lot more of you guys!!! Missed you these past months and thank you so much for keeping in touch with us and keeping us in your thoughts! You’re the best.

Cousins Gerilynn, Carly and Christina for all of your kind words, tips and support (and wondeful soothing melodies!)

Jeaner for going 300 miles out of your way to come visit me when you should have been sleeping!

Mike who ventured all the way out here into the country with a mason jar of delicious Miso soup (and the recipe!) to help me feel better on my bad days

Randy and Lindsay – whose blog posts always reminded me of what was important in my life - you are an inspiration in compassion and giving and I hope to follow in your footsteps

Matt B for being a great friend and neighbor - helping us with the homestead on several occasions – oh yeah, and providing yummy yummy homemade wine :)

Ravi for all of your words of inspiration and insight. Few have been as touched by this illness as you have been and I am so grateful for your sharing with me – and making me laugh along the way, too.

Steph – I knew the minute you walked into a formal MBA dinner in blue jeans that you were awesome – and you have been truly awesome every day since then - you kept me in stitches this whole time. Love ya.

Brian and Mr. Geisel for helping me keep a straight path and offering guidance and enduring hope

Michelle and Jim – thank you for all of the kind words and well-wishes – miss you both!

Erin L – for being such a good friend that she read my entire blog start to finish in one evening. Whatever you did to stay awake through all my blabber – you should market it to college students and new mothers. ;)

All of my wonderful friends, managers and coworkers at Heinz – we barely knew each other when this all started and even so I had your support and kindness throughout everything. You’re my family away from home. Thank you so much!

Our family at P&G: we love and miss you all and have been so happy you have been able to follow the blog and keep in touch. Your continued well-wishes have meant so much to us.

Our Roost/Rochester friends – again we miss and love you and have been so grateful for your support. It’s a bit of a trip, but we’d love to have you guys down here for a visit! There’s lots of room and we want to fill every last inch of it with the friends we love.

All of my wonderful, talented and loving friends from my passion: Karl Rose, Jaime, William, Ashley, Nancy, John, Brandon, Chris, Dean, Derek, Eric, Jim, Khrys, Tom – and many more! I hope to resume working with you all again now that this is over (though my vacation days are gone, gone gone until January so I suppose it will have to wait until then!)

Dr. OB, Dr. Oncologist, Dr. Oncologist’s Nurses: You rock. Heroes. Every. Last. One.

… and anyone and everyone who has given their time, thoughts, well-wishes, good-vibes – everything – thank you so much.

Love,
Jennie, Dan, RJ and WILLIAM (whose mere presence and health is evidence that miracles DO happen and evil cells CANNOT kill our hope or our spirits) :)

One Day More....Another Day, Another Destiny

2010-06-24T09:00:00.005-04:00

The title's from Les Miz - if you've never seen it, it's not one to miss.

Anyhow, yesterday was my second-to-last chemo treatment and also my last appointment with my doc before the treatments are over (however, I imagine I'll be seeing him basically until he retires and leaves me in the incapable hands of his mini-me at some point in the future with the multitude of check-ups that I have coming for the rest of my life).

It went basically like every other treatment has - except that it was really crowded in the center so we were all jammed in like cancer-laden sardines. Oh, and the guy in the chair next to me was old and had been a surgeon in the hospital system for many years. And he was cranky. You'd think that the nurses would be treated well by someone in their own profession - but I think they were ready to shuffle the guy's wheelchair right down the staircase by the time his treatment was over. When he wanted something, it needed to be done YESTERDAY. Nomatter how many other patients were waiting.

A little after 1pm, Dan went on his mission to go get us some lunch. I inadvertantly sent him to a homosexual hang-out that I THOUGHT was a Jewish deli and so he went to Chipotle instead. Anyhow, while he was gone I was chilling with my laptop trying to figure out how to memorize a four minute monologue in a day and a half when I felt my chair wiggling back and forth as if I were bouncing my leg... which I wasn't. Then I noticed it felt more like the building was moving under me... 'oh, great' I'm thinking 'these meds are gonna kill me this time'.

And everything just kept on shaking and then I had a quick memory and decided to take the top off my coffee mug which was sitting on a table nearby and check out whether or not the coffee was moving too... yep. This was definitely either Tyrannosaurus Rex or an Earthquake. Checked the blood pressure cuff on the wall... swinging: check! Earthquake it is.

So the old doc has already left so I look over at the guest of the person in the chair on the other side of the now-empty mizer-seat and say "hey - did you feel that just now?"

I'm not a telepath but I could hear his thoughts and he was definitely considering a call to my nurse...

"Um... no."

Frustrated by having just been deemed either drugged or insane, I went onto the government's geological survey website to see if there were any earthquakes nearby (I AM that stubborn and I AM that dorky to answer both of your questions). I quickly noticed that there is a link so that you can report something yourself. A bit of hesitation (how crazy was I willing to be here?) - and I filled out the 8-screen form. Questions like "were things shaking badly or not-so-badly?" and "did anything fall on your head?".

It got the final page and started asking for location. I put in Pittsburgh's zip (one of them anyhow) and moved on to find that it then asked for my name. That was optional. I'm a chicken @@#$@# so I didn't put it in. Then I hit "send".

I shifted over to the "recently reported" page and found that the only exiting earthquakes were in Southern California and that I was the only dumbass that called one out in Pittsburgh.

So Dan came back, told me I was nuts, too - and we started to watch our final True Blood DVD. I bugged him to pause it every 10 minutes or so because I wanted to check the geological survey website to make sure that I really wasn't nuts. This nearly caused a divorce (he gets really into that show - I think it has something to do with the copious female toplessness but don't tell him I told you that)... but finally, FINALLY - they put up what was called at that time a magnitude 5.5 earthquake along the border with Canada. WOO-HOO!!!!!!!!!! Our fault line!!!!!!!! By the end of my treatment there were at least 30 other report from Pittsburgh, it had made the local papers (online) and everyone from New Hampshire to Cincinnati had felt my I'm-not-crazy-or-drugged-after-all earthquake!!!!!

And wouldn't ya know it I look over and the guy who was about to have my nurse come it with a sedative or straight jacket was GONE.
I coulda' screamed.

I completed my appointment with a detailed story of how I was the first to feel the great Pittsburgh quake of 2010 to my nurse (who I'm sure appreciated every long minute after minute of it - but hey she had to unhook the IV Christmas tree anyhow so she was a captive audience) to gloat a bit and then we were on our way home...

ONE MORE

Next ****CLEAR**** PET scan will be 6 weeks from now!!!! ;)

Love you all and thank you so much for supporting me and my family throughout everything. For those of you who have been out to help with the house and kids, please let us do something to repay you someday. For everyone who lives too far away to stop in for a visit: we are nearing completion on construction and will have cozy rooms for you to stay in soon so consider this your open invite. :) We miss you and love you all!

xoxooxoxoxoxoxxo

A Chemo Day in Pictures

2010-06-10T21:06:00.015-04:00

Well, there would have been more pictures, but I didn't have anyone around to take them at the beginning - but I think there's enough to get the idea.

So here's how the sessions tend to go:
First I arrive at the center clad in nice, comfy clothes. Partially because I take advantage of the opportunity to wear sweatpants acceptably outside my home. Partly because my feet don't touch the floor in the big pleather chairs so I have to sit with my legs folded up under me to be even close to comfortable during infusion.

I proceed to the elevator lobby and (every single danged time) I forget which floor I'm supposed to go to. Maybe it's my subliminal mind trying to spare me the torture yet again... but mostly it's because when I see my doc every other treatment he's on a different floor than my treatment - and for some reason that just wrecks my chemo-stupored brain. Anyhow, I hit 3 (maybe if I write it in here I'll actually remember it) and exit the elevator. First sign-in sheet is with the people who do the port access. I sign in with name, date, doc name and whether or not I have a port. They LOVE folks who have ports because they HATE doing IV's (and they're not good at it either) - tip to you folks debating on whether to get a port or not.

Then I sit in the waiting area, with my bag of Sour Patch Kids in hand. This is because when they access your port they have these little pre-filled syringes of "just plain saline" that they push through it. Most people experience a not-so-pleasant sensation when that happens. Some call it a "taste" others a "smell" - me, I just call it "instant gag reflex". Hence the Sour Patch Kids. Pop about ten of those puppies into your mouth and you're less likely to experience the "saline". Incidentally, there was a British study done recently that found impurities in those pre-filled syringes that leech into the saline from the plastic syringe itself. They suspect this may be the cause. The manufacturer, of course, says that these low levels of impurities are 'perfectly safe'. Mkay.

So the nurse jabs a needle into the skin covering the port (it always stings because they never let the alcohol dry first) and then it's "accessed". They flush the wicked nasty saline and next, they take blood. I don't know how much - I never watch. They use it to check various metabolic markers and determine whether you're well enough to get your treatment. So you have to wait for those results to come back before you're treated.

They then put paper tape over the needle and the short bit of tubing attached to it sticks out for you to try to conceal when you go back out of the room. That's why I like zip-down hoodies when I go - just stuff the tube into the hoodie and you're off like you don't have a tube sticking out of your... chest. My hoodie of choice lately is one my hubby bought me pictured here. Don't know where he found it, but it's pretty cool and very very soft. I'm all about creature comforts on Hell Wednesdays.

So after you have a tube sticking out of you, you go to another room to do a second sign-in (same info - don't know why the two rooms can't talk - they're only 15 feet apart) and wait for someone to call you back. It usually doesn't take long. Then you get vitals taken (yep - still got a heartbeat) and are taken to your "station" for the day. If you're lucky, there will be a private one open - but most of the time you are in a room with three or four other chairs with no privacy at all (particularly frustrating with the location of my port - THANKS Dr. Surgeon: you're a riot).

Doesn't this look fabulously comfortable?

That thingy hanging down the back is the call button for the nurse. Sometimes they answer it.

And here's a close-up of the IV tree machine:

It looks a lot more tree-like head-to-toe than the closeup picture.

So you wait in the big pleather chair for your blood tests to come back. If you're getting bleo you get some tylenol and some antihistamine. Don't know why - never asked - but I don't get it anymore since it tried to kill my lungs so I just wait now. They'll typically hook up a bag of saline to your tube thingy and let that run - and may start your antinausea meds dripping. Mmmmm... tasty, right?

Here's Dan while we were waiting - doesn't he look happy? He's usually hungry by this time because we don't send him out for lunch until after things get started.

Finally, the blood tests come back good (I'm just talented at making white blood cells apparently) and I get started.

The whole process takes about two hours so we usually get lunch. Here I am with my giant Chipotle burrito. Yes, I really CAN eat a whole one DURING chemo. Take that, stomach!!!!

Two hours later and I'm out the door: CHEMO ROUND 5 IS OVAH!!!!!!!! Oh, yeah.

Two more treatments and I'm DONE DONE DONE!!!!!

And one more thing. I know lots of you have been asking about the health and growth of little William. Our little miracle is growing like he's on Miracle Grow Formula and is happy as can be. Take that, Dr. From-Hell.

Patience, patience...

2010-06-09T20:58:00.000-04:00

I've got pictures to put up! However, I also have a belly that just doesn't want me upright right now - check back tomorrow and I will post!!! ROUND FIVE IS OVER!!!!!! Only ONE MORE ROUND (2 more treatments) TO GO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

5/6ths

2010-05-26T22:32:00.002-04:00

Sorry for the relatively short post, but flat out: I'm feeling like hell run over by a freight train. However, there were a few things of note today so I'll just run through 'em and say g'night...

First, today started ROUND 5 OF 6!!! Hooray!!! Only THREE treatments left (equating to six more weeks of chemo-winter -- damn that cancer-groundhog for seeing his shadow). Time oddly enough has actually flown by with Dan and I both working full-time, taking care of our children in the evenings (thanks be to wonderful grandparents who are taking day-shift), building a home addition, getting chemo, and filming the occasional short/commercial/industrial/what-have-you. Oh - and sometimes we sleep, but that's usually intermittent and sparse.

At any rate, the most recent lung function test showed my pipes were gettin' a bit clogged up by fibrosis due to the bleomycin (the lung-eating drug). I also started to get a dry cough that wouldn't go away. Never read papers in medical journals when you have symptoms like that. You'll be tempted to put a downpayment on a tombstone. I actually got so freaked out I called my doc's nurse - which, in turn, freaked HIM out because as he rightly noted he hasn't heard anything from me since I started treatment. THAT'S how gloom-and-doom those papers were. Never again.

So long story short, Dr. Oncologist decided to remove that particular drug from my regimen with assurance to me that "it's the least useful of the drugs" that I get. My first thought was something like 'then why the heck give me the lung-killer in the first place?!' - but that seemed a bit harsh. I then told him I had an annoying cough. He said "well, it's allergy season" and kept right on looking over something in my file (probably going over his grocery list in his head to round out my bought-and-paid-for-15-minutes-with-doc-oncology).
After that, I coughed (I swear it wasn't intentional) at least every few seconds for the next few minutes. He looked up from my file and said "that IS really annoying". I'm not sure exactly how that was meant to sound - but regardless of it's meaning he ordered me up a chest X-ray.

The chest X-ray showed my lungs are currently "okie-dokie" for lack of a precise medical term. So that was cool. I half expected them to find a conjoined twin in there or something the way this cough has been so obnoxiously persistent.

So I went to my treatment appointment (to which my wonderful hubby brought Chipotle to the shock and awe of the nurses who were amazed to see someone my size plow through one of those puppies DURING CHEMO - no, my stomach knows no bounds) - I went to my treatment appointment and found that my bloodwork showed a healthy amount of white blood cells (when those drop it's always a concern that you could get an infection and last treatment they were pretty low) and I got a nurse who was all about speed (the tempo, not the drug).
I was outta there before we even finished our DVD! It was uber-super.

As I was sitting in treatment, though, I realized I've been negligent in this blog lately with trying to show people what this stuff is like. Since it's been a pretty repetitive thing from session to session, blog here has been less than helpful for those of you just getting started with all this crap - and those who are just curious. So I think what I'm going to do to remedy that is start taking photos at my sessions. Ever wonder what an IV tree really looks like? How about a big pleather lounge chair? Or a gorgeous thirty-something with Hodg falling asleep to an episode of HBO's True Blood? Wonder no longer.... I shall deliver. :)

xoxoxoxo

J

Happy Mother's Day

2010-05-07T06:08:00.003-04:00

Click Here, then Read On

I've known about this little doozy for a while, but figured hindsight being what it is, there wasn't much a point of mentioning it. However, I've come to the conclusion that it may be worth it in the ~quite literally~ one-in-a-baZILLION chance that it may help one of my readers someday.

You know how your momma said ridiculous things like 'wear clean underwear in case you're in an auto accident' (they obviously weren't thinking about the biology that occurs when one is in an acutely stressful situation - but I digress), 'never touch a public toilet', etc. etc. ? I'd like to highlight one of these with my own personal experience: do not share utensils/drinking glasses/water bottles - and I say again water bottles - with perfect strangers.

Here's my story of how I got cancer. Yeah, seriously - I actually managed to make cancer into a contractible illness - seriously - read on:

It was a warm summer evening in 2002. Jennie decided it would be fun to go out for a night on the town. So she dresses up, puts on her new strappy shoes and heads for the local swing dance venue (yes - that actually was considered cool in 2002). A few hours into dancing, she's parched. Where did I put that darned water bottle - she thinks to herself, in paraphrase with explicit language removed... oh - there it is - I think.

*** This is the point in an after school special where the image on the screen would freeze and a stern adult voice would be heard saying "Ok kids, what do you think she should do now?" ***

Oh, pick me - pick ME!!!!!
I think she should go ahead and drink from the water bottle because it sure looks like the one she purchased and what the heck could happen anyhow?!

*****

Yeah, so that's what I did.

A couple of days later, my tonsils swell up, I get a fever and sore throat, and I'm too tired to get out of bed...

...for the next week

because I had MONO.

Now I'm not saying that I have the evidence to PROVE that I contracted cancer. I'm just sayin' that it sure is a coincidence that I had a tangible reaction to a virus that most people carry around like harmless belly-button lint and then a couple of years down the road I develop what is pretty well documented to be at least in part an EBV-related cancer.

Good one, cosmos. Obviously, God hates swing dance.

So anyhow, this Mother's Day reflect on all those seemingly silly things your mother taught you and make a mental note to just go ahead and follow them.

You never know when you're going to be caught in dirty underwear.

:)

xoxoxo

Jennie

Victory! Well, as close to it as possible.

2010-04-28T23:39:00.014-04:00

Ok – well – I’m writing this half-drugged so apologies if it’s a little rambly (well, a little more rambly than usual, then).

After a long night with the kiddos (Will got up at midnight AND 4am as an extra special treat for Mommy before her big day and RJ woke at 1am to round things out – screaming his lungs out for no apparent reason – luckily Grandpap was still up and settled him down) – after a long night we set out at our ‘usual’ time of ten-to-six to bypass our ‘usual’ workplace destinations and head to the cancer center for my PET/CT scan-then-chemo day.

This time, unlike last, we cruised in minimal traffic the whole way and got there almost ten minutes early! Before we could start wondering what to do with all that spare time, though, one of the nurses chucked a pen at me, gave me a single sheet of paper on a clipboard and instructed me to complete 'the form'.

I kid you not, question #1: “Do you know why your physician recommended you get a PET/CT scan?”

Now, I’m not trying to tell people their jobs here… but if I didn’t know I had cancer, gently prodding me toward thinking I do with a suggestive question on a form in the radiology room at the CANCER CENTER 1) probably wouldn’t be a very nice way to break it to me and 2) probably wouldn’t help me out because I’d have to be one dumb chickie to have made it into the radiology room at the cancer center without becoming at least suspicious that I maybe – just maybe – may have cancer.

So I complete the form – using a few choice words to describe it under my breath as I do so. “Have you ever had a PET/CT scan before?” --- um – yeah – and if you don’t have a record of that, I am genuinely concerned since you gave me one not more than three months ago now. “Have you ever had chemotherapy?” followed by “Have you been taking any medications?”… you mean OTHER than the chemo?

Honestly.

So after my ten minutes were shot to hell by their pointless form, they called me back into the first torture chamber. The nurse there was real nice. She asked if my port could handle taking the dye for the scan. I said I didn’t know. She said “didn’t they tell you what kind of port you have?”. Nope. “Really?!” Nope. Really.

So she goes into my records in their system and finds the details of the port placement surgery. There are, no lie, like 14 pages of detail about the surgery: where/when/how… down to the detailed description of the TOOLS they used. Ew.

The only thing missing in all that maniacal detail was the “what”. They neglected to say WHAT little device they stuck into my… well, we’ll call it ‘chest’. I guess they didn’t find that important enough. They did, however, mention that it was an ‘infusaport’. The nurse said this was a generic term and proceeded to turn to her computer and GOOGLE IT to see if they could use it for the contrast dye injection. That made me feel oh so comfortable. I silently decided that even if the ‘innernets’ said it was OK I was going to just have them do the IV. Turns out, though, that Google said my port can’t be used so two attempts on my left arm and one on my right arm later, I had a stupid IV in. At least the nurse was nice. I felt bad for her – the third and only successful attempt was the one made by her supervisor.

Then a Janet-Reno super-sized nurse lumbered into the (what now seemed) tiny space and told me to follow her. She took the place of the two-armed-One-Armed-Man this time (you’ll just have to read my previous PET scan post to understand that one) and told me about my spiked Tang requirements and the ‘unusual warm’ feeling of the injection. Now I started to remember all the reasons today wasn’t going to be fun. Particularly when she pushed the nasty-tasting saline through the IV.

In an interesting bit of foreshadowing, this nurse was lots more concerned about me moving muscles after the radioactive glucose injection. It made sense since muscles will take up glucose when they’re being used and they don’t want my lit up scan to blind the doctor when it comes back if I’ve been power-lifting during my wait period to get into the PET scan machine. I didn’t realize how sensitive it was, though. I had been kicking my leg out of a nervous habit (because no, my feet don’t touch the floor in those chairs – and no, you’re not allowed to snicker at that even if I can’t hear you right now) – and I was promptly scolded when she noticed and that’s when she explained that even talking (i.e. moving your tongue and jaw muscles) would cause trouble with the scan.

I immediately went entirely limp and fell onto the floor.

No – just kidding – but at least I knew to try not to move too much or be too tense while my dye was doing its work.

Next I was off to the ‘quiet room’ to take a snooze while I waited to start glowing – and of course drink more spiked Tang. Then a scruffy looking radiologist came to get me and we exited ‘quiet time’ and entered their walk-in freezer – also known as their scanning room. Apparently the equipment is lots more important than their patients because they kept it at about 40 degrees in there. I had to take off my sweatshirt and just wear my t-shirt to boot because the sweatshirt had metal grommets on it. So I lay down on the not-so-comfortable hard-plastic zoom-me-into-the-machine cot and they threw a cold blanket over me (thanks) and hook up the evil ‘warming sensation’ stuff to my IV. I zip into the machine and creepy radiologist guy says I should start feeling warm. Yep – there come the flames. I count to 30 again this time and then they’re gone. “gone?” he asks “yep” I say. Yep – now I’m freezing again.

Radiologist guy: “Any particular FM radio station you like to listen to?”
“Um…. Nope” what – like as opposed to AM? I likes me some 8-tracks too – got any?
Radiologist guy: “There’s a sorta ‘light FM’ station on right now. That ok?”
“Yep.” Whatever, dude – I just want this IV out let's get the party going

So he does the first scan which takes about 15 minutes and sets the machine up for the second scan while I lay in wait just outside the tube. Then he says:

“Any particular FM radio station you like to listen to?”
“Um…. Nope” ??????
Radiologist guy: “There’s a sorta ‘light FM’ station on right now. That ok?”
“Um…. Yes?” what the heck kind of drugs did they give me?

After the moment of déjà vu / total disbelief that in 15 minutes my radiologist had completely forgotten the only conversation we’d had during my visit passed I was back in the relative safety and peace of the machine finishing up my second scan. Then super-size nurse came back and took out my IV and in no time I was back with Dan headed to breakfast.

Breakfast wasn’t that eventful (though very yummy) so I won’t bore you with the details of that. Onto the Dr. Oncologist appointment.

We get to the Dr. Oncologist appointment right on time, get my ‘vitals’ taken (height/weight/bp/pulse/temperature) and get right into an exam room – which is kind of unusual if you’ve been following along because usually I can read a couple of paperbacks while I wait for my doctor to show up in the morning. I am shocked when there is a knock on the exam door just a few minutes after we sit down and am thinking wow – my doc is on the ball today – good for you, doc! when in steps his doc-in-training/mentee/resident. Doh! I’d met the guy before and the last time he was so unsure of himself and shy that I don’t think he said a word to me the whole time he was with my doc. He looked only marginally more comfortable with me now.

So he goes over the basics in somewhat legible English – how am I feeling blah blah blah. I ask him for a prescription for lidocaine so I can spare my wussy self the uncomfortable sting of the needle for the port access and he says sure (I never did get that). I ask him about my lung function test the other day and he says it seems to have decreased but is still normal. I’m good with that. On to the scans.

I’d been uber-nervous and on edge about these scans for like a week and knew it was a huge deal whether this guy knew I knew that or not I dunno. And truth be told I was kinda pissed that my doc wasn’t there to go over them with me since it was such a big occasion, but I was trying to reason with myself to keep and open mind and trust Doc Junior to go over them with me.

So he brings up my PET scan and starts mouse-scrolling down through the layers of ‘me’ from head to hips. I’m not a doc or a radiologist but I’m seeing lots of shiny spots that I don’t want to be seeing… and Doc Junior looks upset. Uh-oh.

“This is your head – brain – here are lots of involved nodes in the neck”
Noooooooooooooo! This is very bad.
“But what we are particularly concerned about is the active spot here in the chest” he says as he stops scrolling and the image on the screen shows a big glowing spot in my chest.
I will not cry in front of Doc Junior and scare him…. I will not cry in front of Doc Junior and scare him…
“And I think there may be one active spot down here as well” he says as he scrolls down toward my lower abdomen”
Below the diaphragm?! Are you f---- kidding me?! It SPREAD DURING CHEMO????!!!!!!! Well, Henrietta Lachs move over, there’s a new incredibly sturdy immortal cell line in town!!!!!! My family better get some royalties on these because I don’t have great life insurance and if they’re going to keep the house…
… and then Dan interrupted my thought process with some urgency in his voice that relayed the same borderline panic I was feeling: “So these are the scans from TODAY?!”

“oh – no - these are the original scans”

OMG, Doc Junior – you really need to work on your order of operations here.

So my doc's mini-me opens up TODAY’S scans and starts to scrolley-wheel down through those.

“The original nodes in the neck seem to be uninvolved now – and the one in the chest also seems to be gone.”
Whew. That’s better.
“And I’m not seeing anything lower”
Hooray!
“However….”
Argh.
“…there are two spots that are new on each side of the neck that I’m concerned about”

….

“… and I’m going to have to go down to radiology to see what they think about them”

…

*deep breaths* don’t kill Doc Junior… he’s trying to be a good doc … he’s trying to be a good doc… ask this tactfully, Jenn : “Ok… so is Dr. Oncologist going to be coming at some point? I will be here all day for treatment and I’d like him to go over all this with me.”

“Yes – I’ll bring him back in with me – you wait here”.

He pauses before he leaves to check my spleen - which, to fill everyone in – wasn’t originally involved in the cancer and when it is it usually means you’re in ‘late stage’ Hodgkin’s so checking it now meant either a) he didn’t know what the hell he was doing or b) he was genuinely concerned that the cancer had significantly progressed since the last scan.

And that’s what we were left to think about for the next 20 minutes. That’s a long time when you have nothing else to think about. I never did solve my family’s financial problems… will have to think about that more sometime in the future.

Knock-knock at the door and I am hesitant to be at all excited about it this time around so I just stare blankly at the doc who walks in until I realize he’s my doc and he’s smiling. My doc is not one to do things just to make you feel better (the first visit I ever had with him was before I knew about the cancer thing and he was pretty blunt about what he thought my issue was without padding it at all – I liked him) - so seeing his condition made me more hopeful about the scans.

“Was it cold in the scanning room by any chance?”
“Yes! It was FREEZING!”
“Ok – well, that’s what those light spots were near your neck – it’s brown fat activating and trying to keep you warm”

*doing the happy dance* * doing the happy dance*

He does a quick basic check-over and asks how everything is going with William etc. He also brings up two concerns he had (which thankfully were much less dreadful than doc Junior’s concerns about me kicking the bucket before I had time to walk out the door): 1) my lungs seem to be hurtin’ a bit from the chemo so he may ditch the bleo at some point – assuring me that it’s the least useful of the cocktail I get and 2) he wanted to warn me that ‘after this is all over’ – and this time I’m sure he’s not talking about after I keel over but rather after my evil cells are obliterated – after this is all over not to be freaked out if a PET scan in the future shows another light-up in my chest. Apparently it’s not uncommon for ‘young people like me’ *he's such the flatterer* to get something called ‘thymic rebound’ which just needs to be watched carefully to make sure it isn’t the hodg coming back for Round 2.

I’m mentioning that both as part of my story and to ask all of you out there who know my tendency to freak about things: please remind me of this conversation when I have a lit-up PET scan in the future. :) Thanks.

So that about wrapped it up. I mentioned to him a little issue I have with fainting all the time – not the fall-on-the-floor fainting, but the your-vision-goes-black-and-you-think-you’re-going-to-fall-on-the-floor kind. It happens when I do yoga, stand up, lean over to pick up the baby – but most of all it happened once when I was driving once and that wasn’t good. He grabbed my bloodwork and confirmed all was normal there – no anemia – and then asked if I was ‘doing good with fluids’. I had to say no. I’m horrible with drinking anything – I’m not a drinker – water-wise, anyhow. He said, basically, ‘fix that’. He asked about my blood pressure. I told him it was 97-over-54 according to his nurse. He looked shocked and glanced over at his mini-me (yeah, he was there this whole time too – again afraid to say anything – maybe my doc beats him when we’re not watching). Poor Doc Junior gave a look like: whoops – yeah – I was meaning to tell you about that. My doc looks back at me, pauses in thought, and says “I don’t think I’ve ever recommended this to anyone before but I need you to increase your salt intake”.

Now I was being asked to hydrate myself more AND eat more salt. How was that going to work? I suggested Gatorade. Doc said no good – not enough salt. How much salt are we talking about here, doc?

Tomato juice.

Ewwwwww!!!!!

I asked him if he could possibly suggest something more disgusting. He laughed and told me tomato juice has an amazing quantity of salt in it. Great.

So as we were wrapping up I just wanted to get everything clear in my head post-Doc-Junior-confusion…
“So we are effectively PET negative?” I ask.
Dr. Oncologists chuckles a bit at what he probably believed was a moment of absolute denseness on the part of his patient… and says:
“Yes. We are effectively PET negative”.

WOOOHOOOOO!!!!!!!!!!!!!!!!!!!!!
TAKE THAT, EVIL CELLS – WHEREVER YOU ARE!!!!!!!!!!
AND DON’T COME BACK UNLESS YOU WANT ANOTHER WHOOPIN’!!!!!!

With that it was on to chemo – now as a cancer-free chick just getting chemo for the heck of it. Got the nice nurse who takes a million years and does a thousand saline pushes again. On the plus side, we got to watch an entire DVD with time to spare… and were conveniently enough around to be there for some ‘special visitors’ to arrive!

So yeah, one of the nurses comes around with a big smile saying there are some ‘special visitors’ today and would we want to meet them. She looks at Dan and goes ‘oh yeah, you guys are going on the list’… I look over to see what she’s talking about and was excited enough to pee on my pleather lounge chair: his STEELERS tee!!!!! Oh, happy day!!!! Jennie turns into an excited toddler, spouting “oh who is it? Who is it?!”

“We’re not sure yet, but I can tell you that Troy comes in fairly often – but I really don’t know”

YIPPEEEEEEEEEEE!!!!!!!

Well, they finally showed up with their entourage of cameras and stuff (yeah, being videotaped during chemo: NOT on my bucket list – but this time I just didn’t give a rat’s patoot). Turns out it wasn’t Troy – which is a bummer – but it WAS three Steelers which makes up for it not being Troy – well, almost. It was awesome though. And I now have video of my retarded excited self being interviewed by Sean McHugh looking direct to camera (I should know better) saying the Steelers were my favorite team ever. Please, y’all – if anyone ever gets a hold of that: burn it. Also on deck were Trai Essex and Justin Hartwig. So awesome.

Okay, that made the day just uber-fabulous. And Dan and I BOTH got signed photos of the ’09 team. Granted, not their most stellar year, but hey I’m not gonna be too picky. Now I just have to figure out how to go to the treatment center every day (without getting chemo because that would just be too much) so that I can add Troy to my poster. :)

If any of y’all know the guy – tell him there is one excited chick out here that wants an autograph someday. :)

At any rate:
HOORAY!!!

Lessons of the day:
1) Killing evil cells feels GOOD
2) never shiver during a PET scan
3) don't trust that people who learned English as a second language get their verb tenses right 100% of the time (we “are” very concerned vs. we “were” very concerned is an important distinction)
4) wear your Steelers gear EVERY SINGLE DAY because you never know when you’re gonna need it

I’ve said it a billion times but it’s never going to be enough – thank you so much to everyone for all of your support and good wishes and just generally being the “good” side to all of this craziness. There’s a few more months left but with the great news today it’s looking good that there’s a ‘happily ever after’ coming soon after all. We owe our ability to keep positive entirely to our friends and family (and each other! you're the best hubby ever, Dan!!!!!!) who have supported us along the way. We love you all!!!!!!!!!!

xoxoxoxoxoxo

- Jennie (and Dan, RJ & William! Even the bunnies: Roo, Merry, and Lilo)

Hey - wanna hear something scary?

2010-04-25T22:21:00.004-04:00

Okay, well I have ten minutes to write this before I enter into the time zone in late evening where remaining awake is bordering on masochistic when I have to get up at 5am… but I figured I’d share since it’s a big week this week.

I wrote before all this started that the scary part was not knowing what the things that were going to happen would feel like. Like the port, and the chemo, and life in general during a battle with an illness like this. And I was right – it all sucks. But it’s amazing how much an abnormal situation, when experienced long enough, becomes your own personal ‘normal’. Now it seems perfectly normal to me that I have a big lump under my skin that happens to provide a mainline for a bunch of horribly cytotoxic drugs… and that for four or five (or last time SIX) really awful days after my chemo cocktails I just sit around thinking about how much I’m never going to drink again… It’s normal for me to brush my hand over my head and watch a rain shower of inch-long striated hairs fall… and I truly, honestly don’t care.

Before all this started, everything that is now my normal was the scary part. So I guess it was time for a new scary part. After all, this is the disease that people seem to fear most – the Voldemort of illnesses whose mere name gives us pause… So here’s my new scary part: the mid-way PET scan.

PET scans done midway through chemotherapy for Hodgkin’s have been found to have high negative predictive value (and I’m not going to cite a source here because that’s way too dorky to do in a blog – GOOGLE it if you like – or take a peep at Pubmed – or you can just trust me here). Plain English: if your PET scan midway through your chemo shows up negative (that’s a good thing), you are probably going to be finishing up your chemo riding on a fluffy cloud of happy ‘I beat cancer’ thoughts. If you are PET positive, well, it’s not 100% bad, but it’s definitely not as good. And it probably means you’re in for some radiation ‘just to be on the safe side’ when your chemo is finally done.

In my estimation, that would be bad, bad, bad for a girl who grew up in a house with so much radon you could probably see the glow from space. If I dodge lung cancer on my own genetic merit I’ll be a lucky lucky girl – if I dodge it after having my chest irradiated because of Hodgkin’s… well that just seems darned unlikely. Maybe an overly cautious worry on my part – but I just don’t wanna play with that fire.

So basically this PET-scan-followed-by-chemo-Wednesday will either start out awesome and end with me feeling like crap – or it will start out with me feeling like crap and end up with me taking anti-anxiety meds and sleeping until I have to get up for work on Monday morning. :)

So I guess if you hear from me Wednesday, the news is good and if you don’t – well, I like ice cream so next time you see me you can get some with me to cheer me up. Rainbow sprinkles, please. ;)

XOXO

J

WARNING: Biohazard

2010-04-18T21:33:00.001-04:00

Here's something about chemo: don't ever underestimate it's enjoyment of the element of surprise. It's sense of humor is unrivaled.

I had been lulled into thinking I understood the pattern of my reaction to my bi-weekly toxin doses. Wednesday OK, Thursday a little less OK, Friday marginal, Saturday .. well, the word for the Saturday after chemo shouldn't be used lightly so I'll let you fill in the blank... and Sunday I would start coming back to life. Of course, a couple of weeks ago that was the exact point where my jaw started to ache like the dickens - lasting all the way til Wednesday. That was a bummer, but predictable. But then...

Just to mix things up a bit my chemo decided to pull out all the stops this time around. Wednesday when I got home from chemo I felt like I wanted to fall out of the car and just sleep it all off right there in the driveway. Miraculously I made it into bed and slept - I believe I can count on one hand the number of times I got up from then until about Friday morning (not that I hadn't considered many trips to the bathroom to just go ahead and give up on trying to hold onto calories for the remainder of the week). Not that I felt any better on Friday afternoon. Or Saturday.

Sunday I wake up feeling pretty good... but that ended quickly.

But no jaw pain - go fig.

So I called my doc's over-the-top-flamboyant male nurse to beg for another med for nausea (he picked Emend). Normally he cracks me up - but I'm just feeling too blah. So anyway he says that you don't really 'switch' nausea meds, but you 'layer them'. Sorry kidneys - but I gotta' do what I gotta' do. I'm already fitting back into my size 2's and I'm happy stopping right there. Maybe if you're good I'll send you some water - if I can remember to drink some.

This upcoming PET scan better come back 110% clear or I'm going to start thinking this really isn't fun anymore.

- J

Halfway Done!!!!!

2010-04-14T23:43:00.006-04:00

Believe you can and you're halfway there.
- Theodore Roosevelt

Today marks the completion of half of my chemo (assuming all goes to the plan). Part of me is ecstatic that half of it is done and part of me is dreading having a whole half left to do. I guess that's what happens when you are someone always straddling the fence of being a glass-half-way-empty-glass-half-way-full-er. At any rate I didn't experience the drama of last time I had chemo - which was very nice. I did end up getting a ferociously anal-retentive nurse, however, who insisted flushing my 'line' with saline after every single med. Two things about that: 1) a saline drip doesn't feel like much and you'd think that's because it's just saltwater so why should anything be bad about it - a saline PUSH is a far, far different animal and when they take hold of that 25-mL syringe you'd better have something mighty flavorful in your mouth because otherwise the TASTE of the stuff will make you revisit any meal you just ate 2) if you get a saline DRIP you eliminate the unpleasant-mess-on-the-floor potential, but you add a new bit of annoyance: you are now stuck watching non-cancer-killing saltwater S-L-OOOOOOO-W-LY dripping down into your fancy-shmancy plastic venous-system-extension line in what I swear is enough time to take the whole damn IV Christmas Tree home with you, take a nice nap in your OWN bed (as opposed to their pleather-studded recliners that are too tall for my feet to touch the floor in), and return to finish your chemo before the bag runs out.

Long story short, my session lasted almost FIVE HOURS from start to finish. The plus part was that she was really nice and mentioned having seen me before in the treatment center and admitted to having hoped that I had Hodgkin's (in a GOOD way - like 'I hope she has Hodg and NOT cancer x, y or z' *not like* 'gee I hope that girl has lymphatic cancer of some sort'). Then she said the phrase that Hodg folks hear way too often:

"If you're going to pick a cancer, that's the one to get"

Ok, I understand that this is meant to be comforting and I honestly do appreciate that and it really doesn't upset me as much as it does other Hodg-folk (I'm not enough part of the community that I'm quite sure what we call ourselves - sorry). However, it operates on THREE faulty assumptions that are a little annoying:
1) it's kind of erroneous at best to imply that anyone picks out a cancer - but I understand it's just a figure of speech (Honey, I'm going to run to Wal-Mart real quick because I need to return this PROSTATE cancer I picked up accidentally and exchange it for an OVARIAN cancer... my mistake!)
2) although there are great stats for Hodg and in its early stages it CAN be cured, it by no means is a weakling in the cancer regime - it kills thousands of people every year - lots of them young and otherwise healthy (So all you researchers out there - don't rest on your laurels - there are still folks out here who need help!)
3) though it would be pretty nice to beat a cancer and then be able to check that off your list of things to accomplish in a lifetime unfortunately getting one kind of cancer really doesn't mean you're not just as likely as everyone else is to get another kind - in fact, some of the treatments for cancer make you MORE likely to get another cancer at some point - not to be Suzy-downer, but that's how the cards play out

At any rate, it was a nice gesture and I appreciated it - but it wasn't too comforting to have it come from a medical professional.

On the other hand, one of the stories she shared from her personal life was that she once forgot to pay her electric bills for so long that they actually turned the electric off on her family while she was away on a business trip. So she's not the sharpest tool in the shed anyhow. ;P But again, very nice.

So we left much later than we'd hoped but still made it home while it was light out. That's when yours truly decided to stumble into bed and try to nap off the feeling like she'd just pounded some tequila shots. I think I may do the same tomorrow. Yes, it's definitely getting harder as time goes on.

But now there's only half the time left! :)

Next round starts off with my PET scan. That's the real test as to how things are going. Good vibes appreciated as always.

Thanks for all of your support... yinz are the best. LOL. ;)

xoxoxoxo

Jennie

Ouch!

2010-04-05T22:06:00.002-04:00

Just a quick note on a sneaky new side effect that may enlighten the curious reader. Round about Day 3 I'm now getting a little twinge of pain in my jaw... which round about Day 4 turns into a constant dull ache... which then on Day 5 Eve turns into excruciating pain that starts in the jaw, continues through my teeth and tongue and then radiates all the way into my ear. This, of course, triggers an obligatory migraine. Day 6 and the jaw still hurts. Doc says "oh, that's the Velban". Yeah, knowing which drug is evil doesn't help me - thanks.

Vicodin works, yes - but it's not really something you (or at least I don't) want to take on a regular basis - particularly if you like doing things like operating heavy machinery or forming complete sentences.

Cosmos: Losing my hair is one thing, and being tired a lot is another - but when you start messing with my ability to enjoy my favorite past-time (um - yeah - FOOD!) you are really hitting below the belt. Knock it off.

That's all I have to say about that.

Come on, Day 7 - be my friend.

- J

Old age comes quickly.

2010-04-01T14:40:00.003-04:00

There is nothing more humbling than being helplessly attached to a piece of machinery that you have to lug around with you as if it were your favorite companion. I think when you're a cancer patient, you don't really think of yourself as one very often. After all, those are the starved, sunken-eye and cheek, hairless people throwing up all the time on TV and you're not one of those. There are a few occasions, though, where it really hits you - usually unexpectedly.

Yesterday's treatment #5 was a pretty happy occasion because firstly, it is the first session of my 3rd round. When round 3 is over, I can say I'm halfway done. I also get a PET scan which, I hope, will show that I am a cancer-free person who just happens to be signing up for chemotherapy for three more months (just for fun, really). It was also a happy occasion because I got to visit work briefly and introduce some coworkers to my latest miracle, William. Everything went pretty smoothly - my badge still worked indicating I hadn't been canned in my absence, William behaved very nicely and didn't pee on anyone, and I got back out and to my Dr. appointment right on time. Ok, so I had to wait forever for Dr. Oncologist but I'm pretty used to that and even had a book to read. But even THAT went well, with him saying we're 'right where we should be' with everything - wherever that is (other than inside the Cancer Center).

Then I went to my chemo and that was pretty normal - got pre-meds, got my awesome hubby to go to Boston Market to pick up some grub since I had missed the free sammich cart (thanks to Dr. Oncologist - but whatever), and picked out the movie Mortal Kombat as our entertainment for the afternoon.

Then about 3/4 of the way through the movie (and my last bag of yummy toxins), we were rudely interrupted by a "Code F" emergency and some bells and whistles. Dan, being the ever-ready fireman told me Code F means 'fire'. I probably could have figured that one out on my own given enough time to work it out - but I'll go ahead and commit that to memory for the next time. So the anonymous voice over the speakers says there's a fire in the "Ambulatory Building" - like any of us who don't work there knows what that is or where we are in relation to it. Lucky me - it turns out that yes, I was in the ambulatory building.

Now what?

So I'm hooked up to my IV Christmas Tree and am thinking 'this isn't good'. Don't know much about chemotherapy but I'm pretty sure it's not something you can just stop right in the middle. Not only that, but the Asian guy on Mortal Kombat is finally fighting the evil sorcerer and I want to see what happens. But I have to pack up the laptop so I stop my Netflix stream and hold down the power button until it shuts down with a 'klunk' rather than risk burning to death waiting for Windows to shut down properly.

Turns out the pumps for the meds are on battery backup (good thinking, Med-rad) so I unplugged myself from the wall and grabbed the tree to wheel it along with me.

Like I said, nothing more humbling than having to drag a big old IV tree connected to tubing sticking out of your chest down a hallway in a sick parade of chemo patients that are all twice your age. I felt ill. Not just nauseated by the stress of it, but I felt like I was one of the sick ones. Nurses asking me if I'm OK - making sure I can get the stupid IV tree up over the 1/16th inch rubber connector between the carpet and the tile to get into the hallway... it was... ... troubling. Is this what it's like to be old?

I leaned up against the wall, feeling the effects of the Benadryl they force on you prior to the chemo... and closed my eyes to try to take a little nap standing up while waiting for the 'all-clear'. Can't tell you how many medical personnel this alarmed. Did they think I was just going to die standing up? Do I honestly look THAT ill?! I felt like yelling at them the number of pushups and lunges I do on a weekly basis - or my new foray into Brazilian dance ala FitTV... or that I could kick any of their butts on my geeky DDR game. Like I said.... troubling.

Finally the all-clear came and I got back into my position in the sick-person parade and landed back in my comfy chair. Didn't feel like watching the movie any longer. Now I just wanted to get done and get OUT. Took about twenty minutes and Dan dragging a nurse into the room after my bag had been run out for ten of those... but we finally made it out of there.

Wish I could do Gilad today to shake off the feeling of being sick... but alas today is the day after chemo and not a good day for Gilad-ing.

Send good vibes for the PET scan at the end of the month - it will hopefully be a marker for good times ahead - and nobody looking at me like I'm a cancer patient again. :)

xoxoxo

Jennie

Too much partying on St. Paddy's Day

2010-03-18T11:31:00.005-04:00

Newborn + Construction + Hating to drink Water + Chemo Cocktails on St. Paddy's Day -> Day 0 and Day 1 = Day 3

I need to start being more proactive about my wellbeing and get more sleep and water. Body says: "I will punish you for this." And she makes good on her promises.
Bleh.
Thank heavens for the anti-nausea meds to take the edge off. May tomorrow be a better day. :)
Good thing: Round #2 is COMPLETED!!!! After Round 3 (next month) we get to see how things are going with my 2nd PET scan!!!!!

xoxo

J

It Goes

2010-03-16T11:56:00.005-04:00

Well, you've probably noticed the posts have been sparse in recent days. That is partially due to having a newborn + toddler, partially due to my home invasion by a thousand construction workers putting together our home addition, and partially due to there not being too much of interest going on on the cancer front.

I can say that things are plodding along at a snail's pace (at least from my perspective) and I'd really like to go ahead and just get rid of this cancer now. I think I've been patient enough and even though I will be finishing my second round of chemo this week, I think I'd prefer to just go ahead finish up my 6th round and call it a day. I mean, why wait?

Okay, so that's probably not an option - but I'd very much enjoy having an 'Easy' button of my very own in bright red with 'Kill Cancer Now' in subtitle beneath the 'Easy' part. Because it's getting darned tiring.

There are lots of side effects with chemo - but here's how the weeks pretty much go:
Day 0: Chemo Treatment Day (yes, I'm going to go with Day 0 science notation here) - treatment usually makes me pretty drowsy, but that may be because of the Benadryl they give me there (I think that's for the bleomycin side effects but someone can feel free to jump in and correct me there because I'm too lazy to Google it). So I get home and try to get to bed as soon as possible. Other than that, no side effects yet.

Day 1: Sometimes I'm a little groggy (but it's hard to separate having a newborn exhaustion from chemo exhaustion) but for the most part, I'm spared the chemo effects. I just have to keep remembering to drink lots of water (anybody else out there HATE drinking water as much as I do?) and try not to do TOO much (no Gilad on Day 1s).

Day 2: Little more tired, some weeks more than others - but this is when I start to get other weirdness. Like sometimes my hair falls out more on Day 2 - and sometimes my tongue hurts - other times my whole mouth aches. Once in a while I don't feel like eating but I can honestly say that I haven't had any dramatic appetite problems during the whole process yet. This is the day where I start obsessively feeling the lumps in my neck to see that they've gotten smaller (and even if they aren't this is the day I convince myself they are).

Day 3: This is the day I would like not to exist. I'm nauseated (but never enough to get sick - just enough to feel like I drank too much JD on Day 2), exhausted, sometimes get chills or sweat like crazy, DEFINITELY lose hair, and my mouth makes me not want to eat even if my appetite is A-OK. I hate Day 3s.

Day 4: I usually start feeling better on Day 4. Enough that Gilad sometimes comes back into my life for a short visit - but usually it's just Yoga on Day 4s because I still feel tired and don't want to do too much and have to repeat Day 3.

Day 5: Sometimes I'm still feeling icky, but most times I feel almost back to normal. Definitely a Gilad day (or even a DDR day if I'm feeling plucky)

Day 6 and on through to the next Day 0: I actually feel pretty much 100% (like I said, it's hard to separate out the newborn exhaustion from everything else). This is the unexpected part of having cancer - you actually do have days during chemo where you feel just like you always did. They don't show you that part in the movies. Those days I can chase around my toddler, try to get some housework done, pretty soon work a full day at work, and do my regular workouts without breaking too much of a sweat. So don't feel TOO bad for me - I'm still a force to be reckoned with on my PS2 dance mat. ;)

Hopefully that helps to let everyone in how what this is like so far. I've heard from some that it changes as time goes by and from others that it doesn't so it seems like everyone's experience is different and I just have to wait and see. I'll share everything here because I want not only to keep my friends and family in the loop - but hopefully to dispel some of the fear of the unknown for someone else someday just like the blogs of other survivors have helped me along the way.

Hope everyone is enjoying the emerging springtime and that we can all get out of this winter funk really soon. Don't know about you, but cabin fever is starting to irk me. :)

xoxoxo

J

Video of Haircut?

2010-03-07T13:12:00.002-05:00

Well, hopefully this works. I of course used protected music (which I paid my godgiven $0.99 for on Zune Marketplace) and they must have some superhuman algorithm looking for that kind of stuff (or it's just stuck somewhere in the music file - whatever) - so they flagged me. If you can't view this and want to, just email me and I'll send it to you.

xoxo

J

Let the Good Times Roll!

2010-03-04T19:41:00.002-05:00

Chemo Round #2: Session #1 is OVER! Ok - I feel like crap - but at least it seems to be WORKING.

Now that my treatment is underway, my meetings with Dr. Oncology are rather short and only once per month. Yesterday, it basically consisted of him asking how I was feeling (which, since it was prior to my chemo cocktails, was 'great') - if anything had changed (yes - I'm not pregnant any longer so basically EVERYTHING has changed) - and Dr. Oncology checking out the evil lumps in my neck. Right side: GONE!!!! Left side: still there, but shrunken by "at least 50%". Chest: well, he doesn't tend to talk about that one and I don't tend to ask. That's the one that is most frightening to me and I really don't care to think or talk about it with him. I figure if it's going to explode or something, he'll let me know and otherwise I'm just going to pretend it doesn't exist.

Funny little story: when I got down to the treatment area the technician there insisted on weighing me and expressed a good deal of concern that I was losing too much weight. Puzzled, I asked him why he thought that since by my records I had actually gained two pounds since my last visit. He informed me that two visits ago I weighted almost 120lbs and now I was down to 104lbs. I mentioned that it may be possible that having a baby between those two visits would have contributed to some of the weight loss. He agreed. I still think that I should have been on a Biggest Loser team at work. I would have totally been a champ. Bet they're sorry they didn't pick me for a team now. ;)

At any rate, things are looking pretty good so far. But man, these toxins are starting to wear on me a bit. I still have my hair (ironically enough it's growing back after my having shaved it all off in expectation of it falling out - oh well) which at this point thankfully includes my eyebrows and eyelashes but thanklessly also includes my leg hair - but as far as feeling icky - well, I'm definitely feeling THAT. I keep telling everyone it's like waking up the morning after partying too hard - except without all the fun of the night before. Nausea is under control so I don't get sick, but I still feel BLEH BLEH BLEH.

So what's it like to be 30 and getting chemo? Probably better than being 60 and getting chemo - but you get a lot more looks (and pity - which is kinda annoying) at the cancer center. The good thing is, on some days I feel good enough to get a workout in (Gilad is my best friend ever) so that keeps up the feeling like I'm winning. After all, if I can do half an hour worth of lunges and push-ups how could cancer possibly take me out? ;) I'm not minding the port much (except when they have to access it and I have to practically strip in a room with like six old guys getting chemo with me) - it doesn't hurt even though it still feels kinda gross. All in all, it's all worth it in the end.

Thanks again for all the well-wishes and support. Now that things are finally underway, sometimes it's overwhelming and knowing everyone out there is rooting for us is a great help.

Oh and a fun fact: if you're at the cancer center getting your infusion over lunch - you get free sammiches!!!! Awesome.

;)

xoxoxoxoxo

J

Chemo Round 1 - Session #2

2010-02-18T12:36:00.004-05:00

Donning my new favorite accessory - a cotton headscarf - I traveled out into the Antarctic wasteland that is now the Midwest with my father to go to my second chemo appointment. Because I haven't really been getting too many of the awful side effects yet (that, I'm told, comes as more treatments accumulate) I didn't have too much apprehension. I'm still in 'I love the toxins because they're killing evil cells' mode.

I just had my chemo port put in last week but wanted to make sure they used it without giving me headaches about it so the morning of the chemo treatment I removed all the bandaging... ew. So I get to the appointment, check in, and wait for my 'port access'. Didn't know what that was - but it sounded necessary. Finally, I ask the admin an hour later why I'm still sitting there and she scolds us for not telling her sooner that we were waiting - apparently her assistant who was working when we checked in didn't REALLY check us in and we were bound to wait there for eternity due to apparently our own fault.... however that works. Anyhow, in the meantime Dan arrived to relieve my dad and I finally get called back into the little LAB room to get the 'port access' done. Naturally, it is a male tech and my surgeon (who is slowly falling down the list of my favorite people) decided to plant my port squarely on breasticle #2 so I have to just about strip in order to let him get to it. Nice. Also apparently I was supposed to get some kind of paperwork for the port to tell them what kind it is so they know where to put the needle. No luck there so they had to guess.... and of course the first guess was wrong (ouch). I'm quickly becoming apprehensive about getting today's chemo when another nurse finally comes in and gets it right.

Apparently port access is getting a needle stuck into the port (which is under the skin next to a huge incision that makes me look like I had a breast implant done) that has a bunch of tubing stuck to it so that when I get to the chemo appointment all they have to do is hook up the IV bags to the tube and let 'er flow. Easy enough. Didn't even hurt much to get the port site stuck.

Chemo was way better with the port. To anyone who ever has to get this done - everyone who tells you the ports are awesome is RIGHT. Get one. No more burning stinging sore IVs - I didn't feel a dang thing with the port. Dan and I sat through the whole session watching Footloose (I'd never seen it before - it's very cheesy when you watch it decades after it was produced) and eating pretzels (they give you free pretzels there - I'm not sure why since their biggest request is 'stay hydrated' but they are Snyders so I don't refuse).

Anyhow, Round 1 is DONE!!!!!

Oh and the best part: the doc stopped by and took a look at the slowly dissolving lumps on my left side and said thing seemed to be going very well - particularly since I'd only had one treatment!

So far 2010 is turning out to be a lot friendlier than 2009. Let's keep this ball rolling. :)

xoxoxoxo

J

Vive Le Liberte!!!!!

2010-02-13T21:37:00.004-05:00

Ok - so it was way too sad to just sit around waiting to watch my hair fall out. So I decided to celebrate my battlescars and my future freedom from cancer by doing a Liberty Spike mohawk - in pink, as was the most commonly voted color on Facebook. ;) So we googled how to cut a mohawk and voila! I have to admit - I don't miss my hair yet - except when I have to go outside in the COLD! Oh - that sucks. Not to be outdone, my wonderful and supportive hubby surprised me with his own haircut - a bunch of pink polka dots - to show that he's my biggest bestest cheerleader. I have the best family EVER! :)

Hope everybody likes it! It's getting shaved off tomorrow. I know, I know - but it's all going to fall out anyway so it's not like I could really keep it! :)

I also took video of the chopping session which I'll post soon. Till then, here's a slide show:

xoxoxoxo

Jennie

Fight: ON!

2010-02-04T22:18:00.003-05:00

Yesterday was a big day and there’s a lot to tell so this may be pretty long. The fight is ON!!!!!!!

Part 1: Staging
This was kind of done before with the first MRI and whatnot, but throughout the time we’ve been waiting the doc has been consistently vague about the stage of my cancer. Though it was mentioned a few times that it was ‘probably stage 2a’ he never really said ‘your stage is 2a’. I guess he doesn’t like MRIs. Anyhow, MRIs no longer necessary due to the new distance between Mommy and William, I went into the hospital for ‘proper’ Hodgkin’s staging tests: PET and CT scans.

We left early in the morning to go to the scans. Due to be there at 7:45, we tried to be out of the house by 6:45 in order to make it to the other side of town. TRIED is the keyword because when you have a newborn in the house time seems to always be against you. Plus, it was the last opportunity to nurse William and there was no way I was going to rush him and miss that precious last meal. Not feeding him any longer was heartbreaking – crushing – whatever adjectives you can find to describe the feeling of being told you can no longer be a mother your child. Don’t know why it’s been so important to me – but it is and I can’t help it. Giving it up is devastating.

Anyhow, we finally made it out the door at 7am to get stuck in traffic – arriving at my 7:45 appointment at a fashionably late 8:45. Thankfully, the radiology staff was kind and let me keep my appointment.

A really nice technician came out first (if you’ve ever seen Twin Peaks and remember the one-armed man… this was him… except with two arms – pretty creepy – had the voice and everything) and took me into a room with one of those chairs you just know means you’re going to get stuck with needles – you know, the ones that look deceptively comfortable with big squishy pleather padding and two suspiciously wide padded armrests…. Oh yeah, and that little swing-out desk that is lined with torture devices like needles, syringes, and alcohol prep pads just waiting… I don’t like needles.

I get asked the basic medical questions like name, birth date, etc. and then whether or not I’ve ever had these types of scans before. I say ‘no’. So he explains that the scanner looks like a big doughnut – much like the MRI – with the CT scan stuck right up against the PET scan so you can do both at the same time. Neato. He then says in order to inject me with radioactive dye I’m going to have to get an IV put in. Not so neat. Oh – and I also have to get injected with iodine which is going to make me feel warm all over and might be ‘alarming’. Oh – and I also have to drink a big glass of Tang laced with something that will ‘coat my digestive tract for the scan’. Awesome. Who doesn’t like spiked Tang?

So IV goes in (and I ask him to tape some gauze over the connection point between the needle and my skin so that I can’t see it) and I drink the disgusting Tang. The nurse comes in and shoots me up with radioactivity and says I need to nap for an hour while it goes through my system. And am I breastfeeding, she asks. Wonderful – the waterworks start and I can’t control becoming a freakish sobbing mess in front of the staff and I answer ‘not anymore’. I hate crying in public. I hate it. But at least the nap sounded like a nice idea.

They guided me to another room (me walking like Tin Man with my right arm stick-straight for fear of moving it and feeling the grossness of the IV sticking into my vein). There were big comfy recliner chairs, dimmed lighting and warm blankets waiting just for me… ‘oh yeah’ I’m thinking. They said I could nap for an hour but that in half an hour they’d come in with more Tang and I’d have to wake up to drink that and then sleep the rest of the time. Stupid Tang. I got into one of the big comfy chairs and they threw a warm blanket over me and…. And the waterworks start up again for no apparent reason (am I postpartum-ing or something?) and I can’t sleep. I stole RJ’s bunny blanket to keep with me as well as a memento from William (a Monkey blanket he doesn’t use yet) so I whipped those out of my purse and curled up with them – sobbing like my eyes were trying to relieve my body of all of the Tang it just consumed in one water-ejection session.

When it was time for the scan, I went into the scanning room, confirmed with them that I didn’t have any metal on me (I thought that only pertained to MRI scans but for some reason you can’t wear metal in a PET/CT either – go figure), and then lay down on the table (which was significantly less comfortable than the MRI table). I had to put my arms over my head and hold onto a couple of handle bars – that made me wonder what exactly this machine was going to do. And it was pretty freaking cool – the machine zooms you in and out of the scanning area like a horizontal pirate ship ride. Wheeee!

Then came the iodine…. The nice technician who I had seen first thing that morning had told me that the sensation of the iodine was a ‘warming’ sensation that felt weird but only lasted about 30 seconds. When they injected it, the ‘warming’ sensation started in my neck – only it felt like my neck was on fire and that it was going to slowly swell shut. It then spread all the way down to my legs and caught them on fire too. Then it went BACK up to my head and my ears and brain were aflame. That’s when I decided that I was going to count to 30 seconds and then start screaming. Sure enough, though – when I got to 27, the whole sensation left and the scan was over. Wild.

After the scans, the nurse removed the IV (hooray!) and I was on my way to go get some FOOD. They had told me NO FOOD before the scans – so I obliged and didn’t eat anything. Of course, I was still feeding Will and so my blood sugar dropped and by the time I got to the hospital for the scans I was woozy. They tested my blood sugar and asked if I was diabetic. Dude – you told me not to eat – hence my blood sugar is low. Anyhow, when the scans were over they told me to go get something to eat – thanks, captain obvious.

We ran over to Boston Market and wolfed down lunch so we could run to the appointment with Dr. Oncologist… so we could then wait in his waiting room for over an hour – then another 15-20 minutes in the exam room. I fell asleep on the exam bed. I awoke to Dan falling asleep in a chair and the oncologist looking at me like he had just seen the dead come alive.

He said he had the results of the PET scan. I told him I was willing to bet they weren’t good because now the right side of my neck for the first time was also swollen with diseased nodes – and the left had a big soft swelling indicating that lymph was now just draining into the skin since all of the nodes there had decided to call it quits.

He said ‘no – the results look very promising’.

Unexpected good news! Hooray! He showed me the scans and I pretended I understood them. It was like looking at those ink blot tests in psychology class (“I see a cat with a jelly sandwich stuck to its back!”) He then made his first call as to my stage. “2A” he said, smiling. For the first time that day I felt like smiling too. Amazing to have been able to stay cancer-free below the lungs for this amount of time and with so much stress to the body… just amazing.

Of course, then he asked if I was still breastfeeding (does EVERYONE have to ask that today?!) Smile over. Cue waterworks. At least there was good news and he confirmed that I didn’t have to get the uber-nasty cancer-killing regimen escBEACOPP – I could get the plain run-of-the-mill Hodgkin’s treatment of ABVD. Ok, no chemo is fun – but escBEACOPP sounded downright miserable. At least people can keep themselves out of the HOSPITAL when they’re getting ABVD.

So we asked the big question: were we still on for the chemo treatment today?
“Yes – I’m sending you there right now”

You don’t know whether to laugh or cry when you finally get the green light to start killing your cancer. Especially after such a long wait. First – it was the end of a long time wondering what was going to happen – now it was happening. Second – it was happening – no turning back – no being scared. Fight: ON.

Part II: Chemo Session #1
First thing: more needles. Had to get blood work done to check white blood cell count, hemoglobin, platelets, etc. Basically to see if I was going to keel over on them during treatment. They decided that I wasn’t and let me go to the treatment area.

I get to the little counter in the treatment area and notice that it’s pretty cozy in their waiting room – nice chairs, a flat screen TV… the admin checks me in and goes through the typical med questions. Then starts talking about the baby. Am I breastfeeding? OMG …

So I’m curled up next to Dan in uncontrollable tears in the waiting room and one of the treatment nurses comes over to reassure me that chemo really isn’t that bad and that I will be done with it in no time – they see this a lot and people in my stage do very well – blah, blah, blah, blah. I don’t bother to tell them the chemo is the least of my hang-ups.

We are escorted to the treatment room and it’s pretty cool. There are 2-3 treatment chairs in each room – the big comfy recliners like they had in the pre-PET-scan-sleep-chamber. They have a couple of TVs (Jennie’s brain starts to work overtime trying to figure out how she can connect her laptop to them to start streaming Netflix videos during treatment sessions) and the obligatory IV bag stand next to each recliner (just in case things look too comfy that will pull you back out of the clouds quick).

The nurses come in and the head nurse tells us we can’t start treatment because we’re too late and we’ll have to come back tomorrow. After an emotionally draining day and too little sleep Jennie goes back into pile-of-weeping-goo mode completely defeated while Dan argues that the doc was so late that we couldn’t help but be late for the chemo and that the doc just sent us there. Nurse begrudgingly lets us stick around while she tries to figure out which of their docs will stay to deal with me if I start to kick the bucket on their watch.

Another, nicer nurse came in a few minutes later with some encouraging (can you describe them like that?) IV bags and started hanging them next to my recliner on my personal IV Christmas tree. We asked if things were going to go ahead as planned and she said yes. She was super. Went through all of the basics of chemo (including, of course, that I can’t breastfeed… *sigh*) and concluded by going through the various niceties of each of the drugs. One kills your lungs, another is bright red and makes you think you’re peeing blood for three days afterward, another does something else – can’t remember – and the fourth makes your veins catch fire when it goes through the IV. Super. Oh yeah, and they all make your hair fall out – but I already knew that one. (Mohawk tentatively scheduled for next week after I take the opportunity to get one last family photo in).

Two hours and another IV later (and yes, the one she said was going to light my veins on fire really did – had to hold a heat pack on my arm to keep from running screaming down the hall looking for a fire hydrant) – two hours later and I was officially done with Chemo Session #1. In all likelihood there are 11 more left.

Epilogue:
Dear Cancer Cells: DIE!!!!!!!
P.S. I’m going to make your last few months a living hell.
Smiles,
J

A Good Set of Lungs

2010-02-01T20:52:00.004-05:00

During my very brief time in a competitive marching band, I remember something the director used to say pretty often (ok - SCREAM pretty often) to his horn line: "Don't be a @#$#@ pansy, BLOW YOUR GUTS THROUGH YOUR HORN!!!!!" Maybe that wasn't appropriate language for the age range he was dealing with, but it was effective because to stand in front of the horn line after that command had been issued was to risk permanent hearing loss.

Where was I going with this?

Today was my 'pulmonary function test' WAAAAAAAAAAY on the other side of town. Imagine trying to pry a mother away from her newborn son for a stupid medical test and you'll have some idea of what poor Dan had to deal with today. So - kicking and screaming (on the inside) I went to the hospital to get this second-to-last test done before treatment.

After a very short wait in a waiting room filled with folks of different ailments (and trying to breathe as little as possible because of it), we met a very chipper nurse who was going to run me through my test. We were led to a little back room that contained a couple of chairs, her desk, and what looked to be a gas chamber... Dan got to sit in a chair while I, of course, got directed to the chamber. For the test you get to sit on an uncomfortable wooden chair inside a big plexiglass box that looks like a phone booth - but with lots of scary things inside you might find in one of the SAW movies. There were about four or five 1/2" diameter plastic tubes leading from who-knows-where into the box along with a switch labeled 'gas' (Jennie's heart rate begins to go up), and lots of little lights which looked like when lit they would be bright red (Jennie starts to wonder what it will mean if she starts to see little red lights turning on during her time in the gas chamber).

The nurse says there will be several different tests and that she'll go over what each one is and what I have to do for each beforehand. Cool. She also says she'll talk me through each one as well because she doesn't want me to have to remember the instructions. Also cool. She hands me a clothespin (ok, it was more of a little plastic medicinal looking clip that WORKED like a clothespin) and tells me to clip it on my nose so that no air can leak out there while I'm supposed to be breathing through my mouth. NOT cool. My nose is still sore from a cold. But I do it anyway because it doesn't seem optional.

She says that the first test is simple. She then goes through about forty different levels of instruction about what I'm supposed to be doing during it. She smiles and asks if I understand. I nod and smile with a blank gaze while I search my brain for SOMETHING it may have recorded during her instructions. Nope. Nothing. Thankfully she kept her promise and talked me through the whole thing.

Simplified: "blow your guts through this tube"

Results: I have a set of working lungs. Which is good because apparently they are working well enough if the chemo drugs cause me to lose some function, I'll still be in fairly good shape. Since I'm no marathon runner, I'll take it. I want this cancer GONE. FAST.

So that's a pulmonary function test. When it was done, we chatted with her a bit and she shared that she was a 3-year remission breast cancer survivor and said that even though it was a big deal to go through she barely even thinks about having had cancer now. That was definitely nice to hear - made the trip worthwhile. :)

Tomorrow I have a 'day off' and only have to take William to his first pediatric appointment. Then the fun begins with the PET scan on Wednesday. The first day I will no longer be able to nurse him. I'm trying really really really hard to take that as a small sacrifice. There are lots of things to be so thankful for - but I have to admit I'm not big enough a person to not feel a bit sorry for myself over that one. I'm really going to miss it.

xoxoxo,

Jennie

Miracles do Happen

2010-01-29T00:18:00.002-05:00

After a long wait (both before and during induction), William Charles Bushnell arrived on January 27th at 8:40PM at a miraculous 6lbs, 4oz (the same weight as his brother at full term!) 19". The delivery had its excitement - little William gave us all a scare when his heart rate dropped very low with every contraction - thankfully coming back up when they would end. The delivery proceeded normally though and we discovered the cause (as the doctor had suspected) was that the cord was wrapped rather securely around his neck. This was quickly remedied by the doc and his cry was the best sound two parents could ever in their whole lives hear. Victory over everything that stood in the way of William becoming a part of our little family.

He was given a clean bill of health by the pediatricians standing by at delivery and has been able to stay with us and avoid going to the NICU. We have received every blessing we had asked and hoped for in that he will also be joining us as we head back home tomorrow morning.

Everyone's thoughts and wishes are carrying us through these hard times and now we have our little miracle to prove it. Much love and thanks.

Jennie, Dan, RJ and William

xoxo

The Big Day

2010-01-26T18:19:00.002-05:00

Well, tomorrow is the big day when BB2 (so long as he doesn't wait more than 24 hours after induction) should be arriving. Will keep this short so I can get packed up and ready to go - but just wanted to let everyone know that we'll try our very best to post frequent updates via Facebook - and hopefully some well-directed text message (we won't send too many of those since lots of folks get charged). Send good vibes and with any luck we will be bringing our new addition (we promise we'll share the name soon) back home with us in the very near future.

xoxoxoxo

Jennie (and Dan and Big Brother RJ)

Final Preparations

2010-01-22T06:08:00.000-05:00

Well, the last two doc appointments are over and I’ll give everyone the quick summary.

Dr. Oncologist
Started off the appointment by saying that depending on the PET scan (scheduled for Feb 3rd) we may go with 2 cycles of escalated BEACOPP followed by 4 of ABVD. At the time, that sounded bad to me. Dr. Oncologist got a phone call on his cell right after making this surprise announcement and so I had time to have a frantic discussion with Dan in his absence about the fact that escalated BEACOPP is highly toxic, known to cause serious infections during treatment (not to mention leukemia), and was, to my knowledge at the time, not used in conjunction with ABVD. As I doubted the sanity of my oncologist (and the severity of my condition that would drive him to consider such unconventional measures) he came back into the room to actually do the exam.

I’ve had a lot of appointments with Dr. Oncologist but his questions during the exams never fail to amuse me. Though he is very experienced and has treated pregnant patients before, he doggedly sticks to his basic ‘cancer question script’ regardless of the fact that he knows they’re silly to ask and I know they’re silly to answer. For instance:
‘Do you ever feel short of breath?’
There is another human whose foot is lodged in my ribcage… let me think…
‘Have you noticed any prominent veins appearing beneath the skin on your torso?’
My belly is expanded to the point of my ab muscles tearing from their connection points. Those giant veins are the only thing holding my intestines from falling onto your floor, sir.
‘Have you been feeling tired?’
Hahahahaha

Anyhow, after our little private comedy skit was over, he checked out all my extra lumps and bumps and seemed happy saying they hadn’t changed – and maybe had gone down a bit. The better news was when he finished checking out the chest lump (since it’s under my breastbone he uses a highly scientific method of tapping the bone to make a hollow thumping noise and then noting where the hollow sound stops) – when he finished with that he seemed pretty relieved and said ‘good’. I didn’t ask for clarification – I don’t want to know anything other than ‘good’.

That was the end of the appointment and the beginning of my quest to figure out where on Earth he was getting the idea of splitting Chemo treatment over the 6 cycles. I'll say this: the man is a genius. Maybe it's because he went to med school in Rochester, NY - where many geniuses go to college (tee hee hee). At any rate, he basically drew the treatment directly from the results of a very recent successful trial by a German group (where BEACOPP is the standard treatment of choice for Hodgkin's at all stages and is very successful). In high-risk advanced stage Hodgkin's, 2 cycles of escalated BEACOPP followed by 4 cycles of ABVD was - well - uberAwesome. My faith is restored and I ask the forgiveness of my Dr. Oncologist for ever doubting him. Should I fit into the unenviable category of 'high-risk advanced-stage' based on the next scan, I'm cool with the toxins: Bring It. Goodbye eyebrows.

Dr. OB
Set my induction date. Apparently the hospital is to call somewhere between 3am and 7am on the 'morning of' to let us know when to come in. Everyone seems perplexed by this when I tell them – but it makes a lot of sense when you think about the fact that the hospital has a limited number of labor suites and a woman who is in actual labor should probably get a bed before the comfortable, calm woman who’s there for a scheduled induction. If it didn’t work that way I’d have to show up with body guards because a woman in labor is NOT someone who you want to cut in front of in line.

So there it is – I’ve wrapped up all of my medical responsibilities prior to delivery and all that’s left to do is go buy some hideously patterned toss-away slippers to wear in the hospital. From now until Wednesday, I get to be just a pregnant girl getting ready for a new baby. :)

xoxoxoxo

Jennie

What's it like to live on the edge?

2010-01-18T06:25:00.002-05:00

Sounds like something you’d ask an extreme sports enthusiast or a bull-rider. Or an FBI agent ;) . Maybe being in info-tech isn’t so glamorous, but these days I certainly feel a bit of kinship with my more adventurous counterparts. For a long time now this journey has been stressful and full of its mini-hurdles but mostly it has been about waiting: waiting for an appointment, waiting for results, waiting for decisions, waiting for … well just waiting for time to pass. Now the adrenaline is starting to pump.

Standing a week away from having to “really” deal with my diagnosis – well, to tell you the truth it’s a lot scarier than I’d pictured. It’s standing on the edge of a big ol’ cliff with 0 visibility of what’s in store for you after you jump. There’s part of you that just wants to keep things just the way they are – because even though what you’ve been going through this whole time has been stressful, change – BIG change – is downright frightening.

There’s an infant swing next to my side of the bed again and a bassinet (that RJ refused throughout his entire infancy to use) in the corner of the room. I can’t picture BB2 in either one. I can’t generate an image of the new baby even though it is a happy time to think about. I can’t picture what life is like with a chemo port stuck in your chest… or without eyebrows. What’s it like to be tired all the time? What’s it like to get treatment and not know if it’s working? There are lots of people who have been through this and who are wonderful about answering these questions – but somehow it doesn’t matter. It’s you now – and knowing how they felt doesn’t answer the real question of ‘how will it feel to me?’ – and so doesn’t take away the anxiety of being forced to step blindly onward.

So I’m left feeling like I’m standing on the edge of that cliff… can’t turn back…just need to generate the strength and will to take those few more steps. Comfort comes from feeling that the babies should be safe now – and that Dan is with me – and my friends and family have my back. In the end, though, I’m the only one who finds out what it’s like on the bottom.

Once this is all over if it’s OK with y’all I think I’ll leave my climbing ropes behind me and just take the elevator back up. I’m all adventured out. Sign me up for the ‘quiet country living’ package, please. :)

Thanks for sticking with Me, Dan and the babies through these difficult months. Know that even when we’re unable to keep in touch with everyone directly that we think of all of you constantly and can’t wait until life is ‘normal’ again so we can enjoy all of the things we used to and see everyone again. You have been wonderful to us and we couldn’t keep our spirits up without your support and love. Thank you.

XOXOXO

Jennie

Good Day: Sunshine!

2010-01-15T06:33:00.000-05:00

It’s warmer here in Winter Wonderland and luck seems to be associated (though not linearly) with better weather!

Firstly, even though I’ve got a billion diseased lymph nodes in my neck (yep – a billion – I never exaggerate)… they have stopped being super-swollen and sore and now I can comfortably wear things like shirts. This is a big plus because I am pretty sure shirts are part of the required dress for my building at work though I suppose I may be able to find a loophole in the employee handbook somewhere.

Secondly, I survived the second shot of my two-shot series of steroids that are hopefully helping BabyB2’s lungs get mature and strong. I had no idea how awful those were going to be but I’ll say this – throughout the eternity it takes to inject 2mLs (yes – MLS) of fluid into your muscle (my chosen muscle was the ‘hip’ - more commonly referred to outside medical circles as ‘butt’ – because, and I quote from my ever-saying-the-‘right thing’-nurse: ‘it’s really big’) – throughout the burning stinging horror of getting 2mLs injected into your muscle you have to keep thinking: ‘it’s good for the baby, it’s good for the baby, it’s good for the baby’. So that part is done and now all that’s left is one Dr. OB appointment, a Dr. Oncologist appointment and then DELIVERY! Honestly, I’ve never looked forward to labor as much as I do now!

Yeah, I know that things get way suckier from this point on and that I’ve had it relatively easy so far (minus the itching – which has gotten SIGNIFICANTLY BETTER since Xmas – thank you, Santa: you rock). Truth is, though, I want to get the ball rolling and get unhealthy so I can start getting back to ‘healthy’ again!

As Rodney Atkins writes (and no, nobody is allowed to make fun of me for liking country music because I DO live in the middle of nowhere and, yes, my Christmas lights really do stay on the porch ALL YEAR LONG):

Well you know those times
When you feel like there's a sign there on your back
Say's I don't mind if ya kick me
Seems like everybody has
Things go from bad to worse
You'd think they can't get worse than that
And then they do

You step off the straight and narrow
And you don't know where you are
Use the needle of your compass
To sew up your broken heart
Ask directions from a genie
In a bottle of Jim Beam
And she lies to You
That's when you learn the truth

If you're going through hell
Keep on going, Don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there

Well I been deep down in that darkness
I been down to my last match
Felt a hundred different demons
Breathing fire down my back
And I knew that if I stumbled
I'd fall right into the trap that they were laying

But the good news
Is there's angels everywhere out on the street
Holding out a hand to pull you back upon your feet
The one's that you been dragging for so long
You're on your knees
You might as well be free
Guess what I'm saying
If you're going through hell
Keep on going, Don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there

Yeah, If you're going through hell
Keep on moving, Face that fire
Walk right through it
You might get out
Before the devil even knows you're there

If you're going through hell
Keep on going, Don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there

Yeah, If you're going through hell
Keep on moving, Face that fire
Walk right through it
You might get out
Before the devil even knows you're there
Yeah you might get out
Before the devil even knows you're there

I'm just sayin'

2010-01-05T21:28:00.004-05:00

This speaks for itself - but as someone who is fortunate enough to have insurance and the means to pay - it weighs on me heavily that there are those in the U.S. whose lives (should they be able to find a way to get adequate treatment and survive) are destroyed by the medical costs of cancer. Having a cancer that effects the young - often before they have established careers (or a job at all) - causes you to see this that much more clearly. I don't have a solution - I don't even have a suggestion. I guess I'd just ask that those who support Dan and I in our family struggles consider how to extend a helping hand to folks who are in even worse situations than we are... and also say a prayer or send them some good vibes - whatever you're into.

xoxoxo,

J

The Final Countdown

2009-12-30T21:44:00.002-05:00

As promised, it is the 30th of December and we're prepped to kick off the New Year with doctors and appointments a'plenty (would anyone like to share? Really - I've got more than I need)!

I started off the day with a long wait in Dr. OB's office to see an ALTERNATE Dr. OB because I chose timing over doctor when making this 'standard' pregnancy appointment. Knowing there wasn't an exam I figured it was OK to see one of the (too many) male OBs. No offense to folks who prefer male OBs (or those who ARE male OBs) but my only opinion of them is that they shouldn't exist. Not the men - just the men combined with the profession. It's just wrong. Strictly my opinion and I know many folks would disagree - but this is my blog and I'm pulling rank. :)

Anyhow, MISTER Dr. OB answered all my questions (most with 'you should ask the other doctors') nicely and was kind enough to mention that 'naturally' they'd like to go as long as possible with the pregnancy... *Jennie grinds molars here*. 'Thank you' through clenched teeth of an exhausted pregnant woman who just hiked a quarter mile in the freezing cold to get there to have her alternate male OB state the obvious while she risks her life just to get to 36 weeks... but it's all good because in my mind I'm willing him into professional non-existence anyhow.

At any rate - the next appointment of the day (I'd like to pause to thank my employer for not canning me and promise that I'll be working like an engine in a fine Italian sports car over the next few weeks) - the next appointment of the day was with Dr. Oncologist. The appointment was moved up from 2:15 to 12:45 so naturally by the time I was seen it was 2:00 (sigh). Dr. Oncology did the normal 'so how is everything going - wow your belly is huge' and then moved on to lament that my lumpy neck doesn't make him happy. He also checked the size of invisi-lump (for those just tuning in that's the one in my chest) and conspicuously said nothing (sigh). The good news was, though, that he believes that we are still safe to wait to 36 weeks and he was even (kind?) willing enough to give me a whopping six days to feed little guy before injecting me with dye for a PET scan after delivery. I'm trying to pick my battles, but am still a little bitter.

ANYWHO - so it looks like BabyB2 will be forced into the world a month early - which is pretty good considering how far we've come. Hopefully he will be in fantastic shape and be able to go home with us - wishes sent upward to that effect will be accepted graciously. :)

Chemo should start the first week of February.

Fun fact: I think that when I decide to shave my head, I'm going to give myself a mohawk first and take a picture of it for the blog. I may even dye it a fun color - I'm open to suggestions.

:)

Will post more as we learn more, but hope everyone has a fun and safe New Year and check back for my impression of Mr. T. :)

xoxo

Jennie

Christmas Miracles

2009-12-24T16:55:00.003-05:00

We were blessed with a few Christmas miracles and wanted to share the good news with everyone! Firstly, the ultrasound images that were used in place of the MRI this time around seemingly indicate there are STILL no additional tumors below the diaphragm... that means that by some miracle my evil cells have been held back and I am still stage IIA which carries with it a favorable outlook (and a little happy dance from me). Even better news came shortly after, though, when we had the ultrasound for the baby (two floors below the other ultrasound - go figure) and he measured a week ahead of schedule at somewhere between 3.3 and 4.3 lbs!!!! We've been told that if he is in good health and breathing fine on his own that the only thing that would cause him to be unable to go home with us after his birth would be if he were under 1800 grams (approximately 4 lbs) - and it looks like he will be over that limit by the time the end of January rolls around! The possibility of him being healthy and big enough to take home right away was the best Christmas gift any two parents could ever receive.

Incidentally, he also apparently has amazingly thick and spikey hair. Not sure where that came from since neither Dan nor I had hair at birth. There is a little concern on my part that it has something to do with me slathering myself with steroid cream every evening to ward off this itching... but as I haven't yet grown a mustache and beard, I'm going to just figure that he has hair so he can be warmer since he's going to be a mid-winter baby. Since Dan and I were born in July and October respectively perhaps that was why we were more willing to come into the world bald.

Hopefully mommy won't be too jealous of little guy when she has to go temporarily back to baldness again later. :)

Anyhow, miracles do happen and thank you to everyone sending all the well-wishes and good vibes along -they're working!!!

Merry Christmas / Happy Holidays everyone!!!!!

xoxoxo

Jennie

Keepin it Real

2009-12-02T21:20:00.008-05:00

Funny T-shirt I may get myself for Christmas... but not really the purpose of this post - just had to share.

OK - so I've been getting lots of comments asking how I'm always so positive and what I do to keep my sanity. I'm going to level with you - there are times where it just gets to be overwhelming. In the interests of keeping this a pretty accurate picture for everyone of what this experience is like, I'll let you in on the 'inside stuff' that makes me normal (or as close to that as I can get).

Take tonight, for example. Good night's sleep (yes, thank you Dr. OB for prescribing Ambien yesterday) - good day at work - and generally feelin pretty nice. Suddenly, my leg starts to THROB due to my skin beginning (faithfully every day at around 4 or 5pm) to inflame and pull on the stitches from my latest incision. This is accompanied by the familiar and agonizing rash/hives/blisters/itching/whatever which I decide I can't stand not scratching - and so I try to scratch through my pant-leg. I've always had weak nails and one of them decides it doesn't feel like taking the punishment of having to put an eighth-of-a-pound of pressure on a thin layer of cotton and bends backward, breaking the nail-bed. My cup runneth over and I'm ready to start screaming in the car - but we're home and it's time to cheer up for the kiddo.

The day perks up when my uber-happy little guy greets us with smiles and squeaks and little clumsy spins and everything seems to go away - til the poor little guy leans up against Mommy's leg and the pain is unbelievable. I pick him up and when he wraps his arms around my neck there's pain there too because of so many swollen and diseased lymph nodes it makes my eyes water... so I can neither play with nor pick up my son. I take two Benadryl and hope the itching dies down so at least I can think straight again. It takes a while for it to kick in and meanwhile I have a conversation with my mother - who is kind enough to come to our house and watch the baby. I glance down to find that I have scratched open a surface vein on my foot and have now ruined the cuff of my pant as well as bled all over the carpet. I hobble upstairs to clean up and put a Garfield band-aid on to help cheer myself up. I am tempted to just crawl under the covers and stay there, but want to spend some time with my hubby and son so I suck it up and head back downstairs - limping because I cannot bend my knee due to the pulling stitches.

My son tries desperately to involve me in a game. He wants me to get off of the couch and I'm too tired and sore. He settles for coming up onto the couch with me and tries to climb up my leg to get closer - it hurts and when I lean forward to pick him up (ok - dumb move since I know I can't do that anyhow) - something sharp stings in my neck (I think Mr. Tumor has recently met Mr. Nerve-Ending because that experience is starting to happen more lately) - and I have to let RJ stand bewildered on the floor - crying because Mommy won't let him on the couch with her.

... and that was my breaking point, folks. Here's reality. I was starving hungry and suddenly had no desire to eat, breathe, move - anything. I had to get under the covers and had no idea when I was coming back up for air. Sobbing, I made as quick a climb up the stairs as I could with my sore leg and then dove for the bed and curled up with my double-human-sized maternity pillow. All I could hear was my son crying for me downstairs and all I could think of was how I could neither care for the son I had, nor protect the one I carried.

Those are the low spots where things fill your head that you don't normally let in. Like how your children will be too young to remember you if you don't make it - or how scary it is to think about never again feeling better - that maybe it only gets worse. I wonder how much damage the treatment itself will cause and if it will change my future even if I do survive. I grieve over my scarred, mangled skin and imagine what it will be like if it really DOES itch for the rest of my life. I wonder if RJ will think I was a bad mother if I'm not around when he gets older and he knows it was my choice to delay treatment. I grieve the loss of the time with BabyB2 - and worry that I'll be too sick to hold him when he finally arrives - and think about how I won't ever be able to nurse him. I cry for my family and think about how the powerlessness I feel must be so much worse for them. I picture my future newborn - too small and not ready - struggling to live because I made the choice to let them take him early so I could have a better chance myself...

...

And here's how I get out of it (along with help from my wonderful husband, who during this episode convinced me that we could Google how to remove stitches - and even found a suture removal kit - heaven knows where that came from):

I go through all those horrible thoughts that I have been forbidding myself - one by one - visit them and then let them pass by. When that's finished, I address my evil cells personally and let them know that they are really in for trouble after I finish my re-charging session. I swear to them that even if a drop of medicine never enters my body that I can will them into nonexistence if the mood strikes me. I apologize to BabyB2 for any damage I've done to his little serotonin uptake system with all of my stress -

and then get back out of bed and continue my day. I have discovered many things during this adventure - and one of them is this: crying in bed doesn't help the dishes get done.

And I guess that's been my approach. For the most part, I just go about normal life because there's really nothing else to do that makes any sense. Anyone who thinks they wouldn't be capable of doing the same isn't giving themselves enough credit. You'd be surprised at how strong you are - and how you can handle everything with grace when that's the only option you're presented. It doesn't mean you'll be super-human and not slip back a few steps now and then - but that's just part of the game.

I honestly don't know that I'm learning anything life-altering from this - and sometimes I wonder if it's bad that my priorities haven't changed and my outlook on life is pretty much the same as it always has been... but one thing I've noticed is that nobody else realizes how much they can really handle - how strong they can be. I'm not advocating getting an illness to prove yourself - but something more constructive - if there's anything you've always wanted to do be it go back to school, have kids, travel, strip-dance - whatever... I say just add it to that overwhelming pile of things you already have on your plate - because not only will it add value and joy to your life, but I'm willing to bet you won't find it as hard as you think to accomplish a little something 'extra'. Time is hard to come by - courage is lots easier.

Cheers,

J

Medical Mystery

2009-11-30T06:19:00.001-05:00

Well, my bucket list didn't really contain 'end up on DiscoveryHealth Network show' and it still doesn't. But it seems as though I may be edging closer and closer to being an official medical mystery.

My incredibly horrible skin has started keeping me up at night - sometimes for a couple of hours before I sleep - and sometimes I just don't sleep (last night, for instance, I almost entered a blog entry at 4am because I was STILL awake - but I opted for the 1-hour nap before work instead). Dr. Oncology has looked at it an determined he has never seen it before (fantabulous) and so it may or may not be lymphoma-related. Given that if it's not lymphoma related I can count on it NOT going away after treatment starts, I decided my two options were: 1) succumb to the itching and just let the Hodgkins get me to end the torment 2) go back to the dermatology group.

I'm going to give the dermatology group some credit because they DO deal with the largest and most complex body organ. After years of looking at the incredible number of genes (lots you wouldn't expect) that are actively expressed in skin - I appreciate the fact that it's a complicated mess. That said, they have ONE FOCAL POINT. You'd hope they'd be able to do something with it. I do better with WebMD, personally. The first time I went to them with this issue, they looked at it, said I was pregnant with lymphoma and threw up their hands (one of which contained a script for an anti-histamine and the other a script for steroid cream - neither of which did anything at all).

So last Friday - one of the few precious days I DIDN'T have to drive downtown and beyond - I trekked downtown and beyond to go back to the derm group. I told them I was no longer sleeping and needed some kind of effort at diagnosis. They took a "scraping" sample for a microscope slide (after warning me - as if it would scare me - that they might make my skin bleed - come on, I do that on an hourly basis) and after checking out the slide said "nope - we still don't know". While they were out looking at the slide I checked out their notes in my file... hehehe - they really don't have any idea - called me an 'incredibly complex case'. I'll take it as a compliment. So then Dr. Derm came back and started eyeing up my mangled skin and said "I think we'll have to take a biopsy". "What kind?" I say. "A punch" he says. Not enough detail, I'm thinking. "What size?". "4mm". Great. Another scar. "Don't you need stitches for that?" Jennie asks... "Only two or so"... or so... ok - I need sleep - do your worst.

So I get numbed up and after the burning pain of the numbing agent I insisted that it would have been better had he just gone ahead and done the punch without... he disagreed but I still think I was right... meanwhile Doc chattered about holiday shopping and how Ralph Lauren clothes are too expensive (for an MD? Seriously?)... and after that I was sent home with a pat on the back and a "we'll let you know what we find out". Let me start holding my breath now....

And in the continuing saga of the lumps, I've lost count of the ones in my neck. At least they're all still on the same side and hopefully occupying themselves spreading there and not heading below my diaphragm for the winter.

I'm still hoping to make it to 37 weeks with BabyB2, but I think that my docs would disagree with me at this point - I say let the MRIs decide - next one is the 28th of December.

Other than that, I fed my cancer cells heartily over the Thanksgiving holiday and had a great time with family - and even got a suprise visit from an old childhood friend. Plenty of things to be thankful for - hope you all had the same great holiday experience!

Miss everyone and thanks for keeping in touch on here and by email - ~10 more weeks to go before chemo!!! (Can't believe I'm actually excited about that!)

xo

Jennie

MRI

2009-11-19T13:06:00.002-05:00

Hey folks - not to be a buzz kill, but I'm gonna' keep this one short 'cause I'm still workin' to swallow it myself. The good news is that all the lumps are in the same spots - so still stage II. Bad news is that the progression of the existing spots has made Dr. Oncologist nervous. Since he's the one I really don't want to have nervous, I'm gonna' go ahead and consider that bad news. As for Baby B, he's been bought another 3 weeks until the next appointment and hopefully 6 until the next MRI if the appointment goes well - but not sure how much longer from there. "Lucky to make it to 36 weeks" was Dr. Oncologist's conclusion. Send good vibes to make him strong - I think we both have a fight ahead.

xo

J

Angels Among Us

2009-11-13T21:37:00.002-05:00

Funny thing about being sick - it seems to bring out the best and sometimes the worst in those around you. You uncover demons, sure - but I tell you what: sometimes it strips away our blinders and reveals how wonderful people can be - and you discover angels.

I'm not the sentimental type, generally. Ask my husband who laments that my first-born's 'Baby's First Year' calendar has a sticker for the day he was born followed by 11 empty pages. I'm eventually going to do a scrapbook or something, I swear... But anyhow...

A colleague of mine came to my desk today with the little statue in the picture above. I recognized the style - these little wooden carvings by Willow Tree are the only 'trinket' I've ever really liked enough to keep - I have one that looks like Dan and I that was a wedding gift and one with a little family of three to celebrate RJ's birth. My first thought was that it was something he wanted me to see and I remarked at how pretty it was and asked where it had come from. "Me" he said. I held the little figure - admittedly a little confused - and thanked him... he slipped away while I was still admiring it.

The figures in this series seem to always come with a little card. I turned this one's over and it read: "Angel of Hope: Sharing the Light of Hope and Courage"...

Glad there weren't any tissues at my desk or I don't think I would have had enough will to hold back tears. A powerful reminder that there are good and caring people everywhere and that the world always has some light in it - even when things are looking pretty dark. I put the little figure next to a phrase from a recent fortune cookie I keep in front of me at my desk: "Happiness is in good health and a bad memory". Those New York fortune cookies are always dead-on. Don't trust the ones from Chicago (no offense, Chicagoans).

Anyhow, I want to dedicate this post to all of my angels out there - you have been my strength and courage. Though I do not want you to experience any, remember in your times of darkness that there are angels among us and that we never travel alone.

xoxo

Jennie

Hair!

2009-11-12T22:22:00.003-05:00

Ok! As promised, here is a photo of me with my new fake hair. I've been so tempted to just wear it to work but just to tease me my hair started to behave itself lately. So cruel. Sorry the photo is blurry - I can't find my camera so had to take the pic with my Blackberry.

Other than that no news is good news, right? I'm hoping to continue that trend right through my MRI scan on Monday... so keep your fingers crossed that the nasty cells are taking a break for now and not partying too much. We'll find out on Wednesday how it is looking and that will probably determine where we go from here. Personally, I'm ready to radiate myself with the microwave if it will make this ITCHING go away! Apparently I am among the lucky 10% of patients to have incessant horrible ITCHY skin. So if any of ya'll see me scratching like crazy - don't be alarmed - it's not fleas.

Well, it's very late and morning comes too quickly. Send good vibes for the scan on Monday and I will let everyone know how it goes as soon as I find out!

xoxoxo

Jennie

Second Verse – Same as the First

2009-11-04T06:00:00.000-05:00

Monday afternoon I braved the bus from downtown to Children’s Hospital to meet up with wonderful hubby Dan so we could walk the couple of blocks to my appointment with my second opinion oncologist. Turns out Google Maps isn’t as reliable as you’d think with walking directions and we got our exercise in for the day (bad day to wear heels) slodging past 10 blocks of boarded up brick buildings, row-houses with bars on the windows and doors, and a few dumpsters decorated with spray-canned pop art.

We arrived at the oncologist’s office and were amazed to find that they had converted their lobby into a greenhouse/sauna combo (doc said she’s called maintenance to come fix the AC to no avail).

Here’s something I’ve been noticing about medical offices: HIPAA is like airport security. On the surface, it makes sense and has a visual appeal about it. It makes you feel better knowing that the guy they hired off the street (and I’m saying that because I know some of them – not because I’m making generalizations)… that the guy they hired off the street is on alert for your aerial safety – carefully screening your co-travelers’ luggage bags (yes, they do laugh later at the ridiculous things they see in there and tell stories at parties) and taking potentially flammable liquids like Evian water away from pilots (true story, I swear – I don’t know what made them think they were preventing an air disaster removing the pilot’s Evian water…) ANYHOW – back to HIPAA: it is meant to protect your medical and personal information from being displayed on a billboard outside your doctor’s office. While that part of it seems to be working, the basic premise is getting lost…

So I walk up to my oncologist’s receptionist in their Death Valley waiting room and there is a really schnazzy sign-in sheet that is set up sort of like a checkbook where you sign in with your name, your doctor, birthday, address and whatnot and the sheet underneath captures the information for their records. It’s cool and HIPAA though because the sheet underneath is all goofy looking so you can’t really read the writing on it any longer without putting it through their uber-special-goofy-sign-in-reading-machine. You then tear off the top copy (the one where you just wrote your personal information quite legibly) and there is a plastic “in-box” – in the lobby – where all of your patient cohorts are – that you are asked to place the slip into – face up. Sigh.

At any rate, enough of that rant. It’s worse when they “verify your personal information” by yelling your first and last name as well as your address and telephone number into the waiting room. I’ve had that happen many times, but not on this occasion.

So we waited for the next hour-and-fifteen-minutes to see the oncologist – swearing (a few times at different intervals) that we were going to just go home if it took ‘ten more minutes’. She finally came into the exam room and started to re-hash to me the basics: Classical Hodgkin’s (I like the classics) – Nodular Sclerosis Type – looks to be Stage IIA with nodes in the neck and chest. Same old, same old. She agreed that holding off treatment is the right thing to do for both the baby and I so that was good. Would have been a heck of a thing to have the two oncologists at odds on that one. She, however, favored early induction (34 weeks because at that point I apparently have ‘done my part’ – I’ll have to let RJ know that he is officially on his own because I have way overstayed my necessity past his 34-week mark) and a course of chemo followed by radiation. – I’m gonna side with my Dr. Oncologist on those issues. I like his ideas better. She also wanted a bone marrow biopsy. Ew.

Really, it was all the same story – so I can check “second opinion” off of my cancer-to-do-list (should have thought ahead of time to put ‘DON’T GET CANCER’ at the top of that list but I guess hind-sight is 20/20).

The next MRI is on the 16th with a follow-up to review the results on the 18th. That should give us a better idea of how things are going to go.

Wouldn’t want to leave everyone out of the circle of trust from now until then so my plan is to do another update next week even if you have to read about me going grocery shopping and complaining about the weather. ;) Of course, I still have to post ‘new hair’ pics so that will be something to come back and look for!

Thanks to everyone who has responded to the blog via leaving a note here or emailing me directly. It helps to be able to have some traveling companions – Dan and I (and the babies) have a long way to go and it only gets harder from here… your support means the world to us.

Xoxo

Jennie

Cleared to Keep on Keepin' On

2009-11-02T06:10:00.002-05:00

No lie - this is exactly how I found the desk at the OB's office the morning of my birthday. I had to take a pic.

Some good news on my birthday last week (yes, I spent the first half of my birthday at doctor’s offices): everything seems to be “fine” (I have new definitions for that now) and according to the oncologist there is a chance I may be able to go full-term with BabyB2 as long as nothing changes!

We started out my birthday with a trip to the women’s hospital to go see the high risk OB. This time we were on the 0 floor of the hospital instead of the 2nd floor. The air must be better filtered down there or something because the doctors on that level don’t seem to have any delusions of grandeur or God complexes. They were knowledgeable about the options for treatment, supportive of whatever we wanted to do – and even leaned toward treating now. “Go with the philosophy that you should do now what you would do if you weren’t pregnant” was a summary of what they said. While that was a huge relief (and a huge difference from Dr. From-Hell upstairs) – it made us question Dr. Oncologist’s reasons for holding treatment off. After all, if the OB said okie-dokie then what other barriers were left? – let’s kill this thing!

Given that I seemed to be sprouting lumps like I had just kissed the Frog Prince, I scored an emergency appointment the same day with Dr. Oncologist (he actually came into the office on a day when he wasn’t supposed to be there just to celebrate my birthday with me – or something like that). Anywho – he checked over origi-lump and said it hadn’t changed size (good), invisi-lump was the same (great), and he said the additional lumps on my neck were OK and he couldn’t find the one under my arm. He said things will come and go throughout the waiting period so I guess I have lots of weirdness to look forward to. We asked him about the treatment plan and he went into more detail than before regarding his reasoning. Basically it boils down to – he wants to treat aggressively with the chemo and thinks it’d be a bad idea to combine particularly aggressive chemo with pregnancy for BOTH my sake and BabyB2… ok, cool – I’ll go with that. The BEST part…he is completely against using radiation unless absolutely necessary (yeah, when he said that in my head I was doing little back-flips of joy). So wretchedly bad chemo – but hopefully no radiation – is the plan. I’m good with that.

That was the good news on my birthday and I could go home and celebrate that even if nothing had changed, everybody was in agreement and on the same page.

I got to go back to being excited about my trip to the hair salon Saturday.

We woke up Saturday morning, popped RJ into his car seat, and drove the 45 minutes to our local wig salon. The fabulous owner (who had had cancer TWICE) went through the basics of fake hair construction (lots more complicated than you’d think) and fitted me with all kinds of hair that just didn’t look right. I couldn’t decide on synthetic or a real hair and she said that with a real hair one I could style it every morning just like I always do… so I thought about that for about half a second and told her I’d take a synthetic. Honestly – who WANTS to spend time on their hair every morning if they don’t have to?! I guess if you’re a professional stylist maybe that’s something that would make your day more warm and fuzzy – but I’m thinking hair I can put on like a baseball cap every day is a gift from God.

I was all psyched to get a “normal” looking hair and one crazy, funky one. That was a really cool idea until I realized that I am in the Midwest and we don’t do crazy, funky in these here parts. The closest I’d be able to get to “funky” here would be hair that would make me look like a character from the Golden Girls.

I did, however, find “normal” hair that looked just like my current hair (well, when my current hair is actually cut properly and styled – I don’t remember the last time that was the case – but whatever). The owner of the salon did her thang and trimmed it to look like my haircut (I gave her one of my acting head shots to go from so that she’d know what my hair is SUPPOSED to look like), thinned it out (those things are THICK straight from the box – it’d be like wearing a yak on my head), and showed me how to take care of it. I was sent on my way with a bill that was about half of what I had expected to pay and a great insti- hairstyle. I have worn it out once since then to cover up a bad hair day… I promise I’ll take pictures!

Oh yeah, and all you folks (including dear hubby Dan) who said ‘no blonde’… I begrudgingly admit you were correct. I look absolutely horrendous as a blonde. They didn’t have any red (must be too risqué for the region), so I’m afraid I can’t judge that one. I went with brown with light brown highlights so that when I get all pale and vampirey (wonder if my skin will sparkle… tee hee hee) it won't be so dramatic.

Monday is Dr. Second-Opinion and then I get to wait for a while in-between appointments until my 2nd MRI in mid-November (ugh – laying on my back with BabyB2 crushing my spine for 3 hours…) . Until then, I’m instructed by my doctor to get as much sleep as possible (HAHAHAHA) and eat my veggies. ;)

Thanks to everyone for the birthday wishes… it was so nice to hear from you and I hope to celebrate my first cancer-free birthday with you next year!!!!

Xoxoxo

Jennie

My birthday present is...

2009-10-29T06:07:00.001-04:00

.... another lump. Ignore my bad numbering scheme. This is #5 if anyone is keeping count. Definitely not my favorite birthday present.

Not gonna' kid you guys... this is seriously wrecking my mojo.

Send some good vibes to me and BabyB2.

xoxo

J

New Developments

2009-10-27T21:11:00.010-04:00

Well, there were two new developments today: lump #2 and lump #3. Two new friends of mine above the spot where the initial biopsy was taken. I, of course, freaked and called Dr. Oncologist. Apparently he's out of town (the nerve) and so I talked to his nurse. Thankfully, the nurse had access to all of his notes and found that lumps 2 and 3 were actually found on the MRI that was done several days ago and 'not to worry'. Yep - this is me not worrying...

On other topics I'm starting to make my poor PCP nervous. In mad crazy attempts to slow this thing down while we wait for Baby B 2 to arrive, I've been digging deep into a bag of half-baked journal articles and have toyed with a few ideas. One was taking 5 grams (yeah, GRAMS) of n-acetyl-cysteine daily... that was shot down by my OB. The other was less 'intake' and more 'no-take': I wrote a note to my PCP today (who asked I refer to him by his first name because Dr. PCP makes him sound old - nice guy) asking him to please refer me to a nutritionist who would be willing to put a nearly-underweight pregnant girl on a caloric restriction diet. "You're kidding, right?" was his response, in paraphrase. He's currently "looking into it". I assured him I did not want to pay a nutritionist $25 to have them tell me to take a prenatal vitamin and eat more veggies... we'll see what kind of magic he can spin.

In the meantime, I'm going to involuntarily feed and nurture lumps 2 and 3 as well as origi-lump and invisi-lump (he's the one in my chest) and hope that the one thing I WANT to have grow is getting bigger and stronger by the minute so he can come join the family and let Mom get some treatment.

If anyone else has any other half-baked ideas for stopping tumors in their tracks, I'm currently open to receiving just about any suggestions. Please refrain from anything that requires falling from heights, bathing in any kind of food product, or consumption of any variety of insect. Thank you.

xoxo

Jennie

Real Quick Update

2009-10-22T19:48:00.004-04:00

Just a whole lot of waiting going on around here these days. I have an appointment with a high-risk OB (not the kind with the devil horns) next week as well as a 'second opinion' appointment with an 'alternate' Dr. Oncologist and a visit with my Dr. Oncologist the week after. Wow - that's a lot of MDs... I will, of course, post everything here as I go (the weirder the thing that happens, the more likely I am to post it). Until then,

“May God give you...For every storm a rainbow, for every tear a smile, for every care a promise and a blessing in each trial. For every problem life sends, a faithful friend to share, for every sigh a sweet song and an answer for each prayer.”

Cheers.
xoxo

Jennie

And the verdict is....

2009-10-18T12:27:00.004-04:00

Ok - I'll come clean - that's not really a picture of me getting my MRI done on Friday. I wanted to include a picture of the GE MRI that was used so I started Googling it and came up with lots of boring photos of the machine sitting in a fluorescent-lit room looking all robot-like and foreboding. Then I found this photo and figured it was just right - the MRI machine accompanied by two models smiling like the one who's strapped to the table is about to go on a ride at Disney. Had to chuckle.

If you've ever been curious about how a torpedo feels while it's sitting in its bay waiting to be fired out at a German sub (no offense to any Germans, please - just a historical reference) ... well look no further than your friendly local GE MRI machine.

I started off Friday with as much of a day at work as I could squeeze in - then a run over to the hospital for the MRI. I obsessively removed all metal - certain that even the smallest piece would impale me like a bullet when they flipped the switch on the machine ("no, the cancer didn't get her - the idiot had a dime in her pocket when she went into the MRI machine...") I was armed with the memory of a story from years ago where someone left an oxygen tank in the MRI room without bolting it to the wall and it flew into the machine and smooshed whoever was in there... and so gave the technician quite a laugh when I refused to leave my shoes under the chair in the room because they had little metal buckles on the sides. (He also assured me, for anyone who's been following along - that your blood does NOT get drawn out of your body during an MRI just because it's full of iron - after which he also had a good chuckle).

I had to get a neck, chest and abdomen scan so the tech started out with the neck. It was pretty comfortable being on the cushy table and because I had to keep my head still they secured my head in some kind of Hannibal-Lecterish gadget. That made it even more comfortable oddly enough and I was prepared to be whisked into the tube for a nice nap. The technician then handed me a couple of earplugs.... wait... earplugs? 'It gets pretty loud in there.' The tech answered the question before my brain could put the confusion together enough to phrase it. Great. There goes my nap. I popped in the earplugs and was then stuffed into an open end of an empty paper towel roll to have my pictures taken.

Skip this paragraph if you've had an MRI before - but I'm going to include it because I wish I'd heard from somebody what an MRI is like before I took my little Disney ride...

So you're jammed in this big tube and you can't see either open end (at least when you've gone in head-first like me). That's a little freaky even if you're not claustrophobic. The top of the tube is about 4-6 inches from your nose and - at least for me - I had this irrational feeling like I was going to start running out of air. Maybe that's claustrophobia - but I've never had it before so I couldn't tell ya. I found that closing my eyes helped because I think a neat trick they've done is to blow air through the tube so that it FEELS like you're in a big open room as long as you have your eyes closed. I heard the machine whir to life and I thought 'that's not that loud'. Then it makes some clicking noises. THEN.... you know those old gangster movies where they fire off a Tommy Gun while screaming at the tops of their lungs? It's like that - on crack. So I lay there - perfectly still to prevent messing up any images (I certainly didn't want to be in there any longer than I had to) - for an HOUR. Yeah - an HOUR - and then finally the machine spit me back out. The technician casually leans over me and goes 'Ok - you can get up and stretch while I set it up for your next scan'. Huh?!!!! 'You're kidding' I say. 'No - that was just the neck'. Argh.

The next two hours were made even more exciting because when they take pictures of your neck, they don't care if you breathe (you just can't swallow - which is fine when you're petrified of moving - it's one of those controllable things)... but when they take pictures of the rest of you - you can't breathe while they take the image. So now I couldn't be the passive victim - every few seconds a cheery voice would come inside the machine and ask me to 'take a deep breath... hold it....(an eternity passes) ok, now breathe!' Most of the time, because I'm still getting over a cough from a bad headcold (yes, when you have cancer, it for some reason doesn't seem to protect you from any other miserable diseases - I wouldn't have thought that - but it's true) - most of the time, it went more like:
'take a deep breath'
'ok - hold it'
(cue eternity)
gulp, gulp, gulp - *don't cough - don't cough - don't cough*
'ok - now breathe!'
*gasp*gasp*coughing-fit*gasp*
'you okay?'
*gasp*cough* 'yep'
... and then sometimes he would be so involved with his work (or watching TV - I could hear it in the background whenever he'd come over the speaker)... so involved with his work that he would forget to say 'breathe'. So in case you ever need it - here's a tip. Whenever the machine stops firing it's Tommy Gun at you and pauses to reload - take a breath - it's safe.

So then the wait began... finally Dr. Oncologist called up today (on a Sunday - this guy rocks) and prefaced everything with 'I have good news'. Yeah, no - still have cancer - not THAT good of news - but he affirmed that there do not appear to be any tumors below the diaphragm - just the one in the neck and a relatively small (non-bulky he called it) one in the chest. That means I'm Stage II for you Hodgkin's fact-lovers out there. I believe because I don't have any other symptoms that I know of that it is Stage IIA but I haven't been told that so no trying to sue me for bad medical information if I'm wrong. His advice is to postpone treatment until after the baby is born (likely an early induction around 36 weeks - I'm at 21 now). I have mixed feelings on waiting and early induction - but I suppose it's better than the (somewhat small) risk of chemotherapy drugs finding their way to the little guy. It's hard to just sit back and say 'ok - cancer cells - just keep on doin what you're doin and I'll get back to you in a few months - I'm gonna trust you to behave yourselves and not do anything crazy'. Kinda makes me think of the parent of a teenager going out of town for the weekend leaving said teenager to look after the house...

... I just hope they clean up after the party to the point where I don't know anything ever happened.

xoxoxo

Jennie

A Date with an Oncologist

2009-10-14T21:27:00.007-04:00

*cue heavenly-host music*

The visit to the oncologist today was such an incredible relief it's almost making me giddy - but I still have cancer so I'm gonna' temper the giddy and save it for after treatment. Instead I'll just stick with 'incredibly relieved'.

I arrived at the cancer center armed with a notepad full of questions and more than a healthy share of hesitation due to the encounter with Dr. From-Hell yesterday. At this point I was on the fence as to whether Dr. From-Hell had just been the evil messenger sent by my oncologist to save him the discomfort of trying to convince me to off my second child. Grrrr... So anyhow, Dan (my fabulous husband really does go to all of these appointments with me) and I formulated a plan in the car that if we were convinced this guy was in league with the devil we were going to walk out and find a new doctor.

Thankfully we were able to ditch Plan A. When we described to Dr. Oncologist our experience yesterday with his recommended OB he assured us that sending us there for that particular advice was not his plan. He was also surprised to learn that Dr. From-Hell doesn't see patients any longer (for old friends, they really don't talk much). He agreed to set Dr. From-Hell straight by copying him in on the treatment recommendation when that is finalized since it is possible it will include treatment during the pregnancy.

So that's the good news of the day. This'll be a short post so I can get some sleep tonight. ;)

Friday is the day I get to be stuck into a creepy tube-machine (I guess the correct medical term is MRI) to have my guts examined by a magnet. I always wondered - since your blood has lots of iron in it, when they turn the magnet on, does all your blood get sucked toward the magnetic source? Hmmm... I'll let y'all know.

G'night and thanks again for the support and well-wishes. Couldn't keep up good spirits without you.... truly - thank you!

xoxo

Jennie

The OB From Hell

2009-10-13T22:21:00.003-04:00

Mkay - so there were a few rough days there where all the news seemed to be bad and I'm thinking 'there must be something silly here to lighten the mood'. And today I got my wish a thousand times over. Not funny 'ha-ha', but 'wow-that-can't-be-for-real' funny. And there's a lesson here, so everyone please read this one until the end. Think of it like an after school special...

At my first (and to this point only) appointment with my oncologist (who was referred to me by my new fav person in the universe: my surgeon), I was told that I needed to see "one and only one OB" (come on, like I'd cheat on my OB - I'm not that kind of girl). Anyhow, apparently it was naughty of me to be going to a "practice" full of qualified doctors and nurses and so Mr. Oncology (I'm going to pretty much leave out all names on this blog mostly because I don't want to be blacklisted at the one hospital system my insurance covers).. Mr. Oncology says he's got a great doctor he wants me to see and he just happens to be at one of the most respected women's hospitals in the country. Jeepers - I'm in.

I'm under the assumption, of course, that I'm being sent to this super-special OB because he must know about cancer and pregnancy - or at least he's a high-risk OB.

Nope. Turns out he's just a "professional and personal" acquaintance of Mr. Oncology.

So Dan and I arrive at the OB-from-Hell's office early for my 3:30 appointment and proceed to wait until 4:15. We are then escorted to an exam room by a nurse who is carrying my file. I sit down on the crunchy paper exam bench and wait... while the nurse looks 'carefully' over my file. She then says "so why are you here today?". I tell her I was referred to Dr.From-Hell. She says "great. I assume everything is going ok?" .... That's good enough for you to get the idea of how that whole conversation went - on to the doctor...

Doctor arrives in room, sits down, and lets me know that his colleague hasn't bothered to tell him the results of my biopsy. So I fill him in. He asks if baby has been moving - I say yep. He says he wants to hear the heartbeat. Sure. He listens for about a tenth of a second and says "yep - still there". He then excuses himself to "go give another patient some news" and promises to come fetch us so we can join him in his office - apologizing for sending us to an exam room when we were really there for consulting.

Consulting? Ok.

So we sit down in the office and Dr.From-Hell starts talking about the fact that I'm only 21 weeks along and that we're going to have some 'tough decisions' to make. (Wait - I've totally heard this one before - what was the punch line again?) That's when my blood started to ring in my ears... but I wanted to give the guy a second chance... that's when he said that we should be aware that you "cannot treat cancer during a pregnancy". Dan and I looked confused at one another - and gently tried to steer Dr.From-Hell in the right direction: "We were under the impression that chemotherapy was generally a small risk when needed". Come on, doc - turn this ship around.... "No. Absolutely not. Chemotherapy cannot be given to a woman who is pregnant." This is the point in the conversation where my brain said "well, this is pointless - what did I need to get at the store on the way home in order to make those muffins tomorrow? 6 bananas....some canola oil...." The rest of the conversation, in summary: "If you want treatment, you have to end this pregnancy and in Pennsylvania abortion after 24 weeks is prohibited so I want your decision by the end of the week. Thank you - please pay at the front desk."

I'm gonna stop the verbal diarrhea there because I think you get the jist and if I recall the story in any more vivid detail, I think I may start yelling obscenities at the computer and it would wake my 14-month-old (never good to do after 9pm).

1) Management and outcome of metastatic melanoma during pregnancy. Br J Dermatol. 2009 May 21.
2) Perinatal Outcomes of a Pregnancy Complicated by Cancer, Including Neonatal Follow-Up After in Utero Exposure to Chemotherapy: Results of an International Registry. Am J Clin Oncol. 2009 Sep 10
3) Gynaecologic cancer complicating pregnancy: An overview. Best Pract Res Clin Obstet Gynaecol. 2009 Sep 7
4) Treatment of pregnancy-associated breast cancer. Expert Opin Pharmacother. 2009 Oct;10(14):2259-67.
5) [Hodgkin's disease, fertility and pregnancy] Rev Med Brux. 2009 May-Jun;30(3):170-6. Review. French.

... and I could go on but I don't think anyone wants to read an exhaustive list of my resources. THOSE, Dr.From-Hell, are articles from recent peer-reviewed journals indicating that the risk to the fetus for chemotherapy during the second-half of pregnancy is roughly the same as the possibility of a fetus having problems for any old reason in the general population.

Not to mention the countless women who contribute their stories to this network: http://www.pregnantwithcancer.org/ Many of whom were treated in even the FIRST trimester and gave birth to healthy babies (and lived to watch them grow!)

Here's the message - and it applies not only to those of you reading who are going through cancer - but to anyone who deals with anyone in the medical profession: They can be experienced, they can be convincing, they can be sitting in one of the most respected hospitals in the country... they can even be recommended to you by a doctor you DO trust... DO NOT TAKE THEM AT THEIR WORD IF YOU DON'T AGREE WITH THEM. Please, please, please please PLEASE get a second - third, fourth - as many opinions as you feel are necessary to ensure you get to the truth.

I don't know how many women have been told by this man to end their pregnancies unnecessarily... but not to worry - I do not intend to just leave the practice in my dust and not clear my conscience. I will pursue this and end the madness!

Remember that a true medical professional will shy away from giving firm answers... everyone's case is different and a doctor who doesn't recognize that isn't one you should be dealing with.

There is always hope - and if there is anyone out there trying to take it away from you - find someone else to talk to!

Guess that's enough from my soap box tonight.

xoxo

Jennie

First Post: Diagnosis

2009-10-09T17:37:00.007-04:00

Cancer is a word, not a sentence. ~John Diamond

I'm starting this blog following in the footsteps of a new friend who was brave enough to put her experiences with this disease out into cyberspace to help her friends, family, and strangers, like me, better understand this unexpected journey.

Though I sent out a message to as many close friends, family and coworkers as I had emails in Google for earlier today, I know it was fairly succinct and that many expressed that they'd like to keep updated on what happens and learn what brought me to this point. This is my forum for connecting with all of my loved ones and allowing them to travel with me. I hope it fits the need. Thanks, Lauren, for the courage and thanks to everyone who has sent their best wishes and love.

I like to have a sense of humor about things, so you'll probably find it interjected here fairly often. I don't want to make light of something so serious, but there comes a point where you just have to look up at the cosmos and say admiringly: 'good one'...

The Story
Once upon a time... (I'm going to start things that way because it inevitably leads to a 'happily ever after')

I was playing on the floor with RJ, my energetic and perpetually happy 14-month-old when (I really can't remember why) I felt the need to check over the left side of my neck. I had been carrying my over-stuffed purse on that side so maybe it was sore - but I honestly don't know what compelled me to do it. I froze when I felt a big lump that I am certain wasn't there the day before. It wasn't sore - and I knew it was bad. I called my HMO, like a good patient, and talked to their nurses. They assured me as long as I was still breathing I could just see a PCP the following week (it was a Friday night)... oh yeah, and 'put a hot towel on it'. Right.

The next week, I went to a PCP who assured me it was an infected lymph node, took some blood, prescribed antibiotics and sent me to a surgeon. The whole 'everything's fine but I want you to see a surgeon' thing tipped me off and I started to begin the first of many days and nights on PubMed trying to self-diagnose. They tell you not to do that because you'll come up with the wrong answers... I'm thinking that's just because they want to stay in business. Anyhow, it doesn't take much searching to find a lot about lymphoma when you search for swollen lymph nodes that are enormous, don't hurt and aren't accompanied by any kind of infection or illness.

So the antibiotics did their magic and after 7 days of wondering what exactly that magic was I threw them out and saw the surgeon. He was a ray of sunshine - explaining that I was going to have a "lot of tough decisions to make soon" referring to my pregnancy and sending me out the door in tears to go get a needle biopsy done. Dan and I immediately went to go to the recommended hospital and upon arrival noticed immediately that the hospital wasn't in our insurance's network. But that's another branch of the story I can go into some other time. Long story short, in the pursuit of answers we had a needle biopsy done and anxiously awaited results.

Result (drumroll, please): "Oops, we took the wrong sample. Your biopsy says 'skeletal muscle tissue'".

They then proceeded to scold me, saying "You were supposed to have a lymph node sample taken". At the time I was too dumbfounded to speak seeing as how they used an ultrasound to guide the needle biopsy and had two trained ultrasound technicians watching the whole procedure. But I'm not bitter.

That's when we switched doctors. Dan's job at Children's Hospital comes with its perks and one of them was a boss who knows which doctors to go to. So we went to one. He was awesome and after a general exam and 1,000 questions he was honest enough to say "I have no idea what you've got" and referred me to another surgeon. So now weeks have passed and we're back where we started (hope everyone is still awake who started reading this).

This surgeon scheduled another needle biopsy. Wow - what a difference a better practice makes. This time instead of a little room with a couple of ultrasound techs, I was in an O.R. with a radiologist with a suit and tie (or I hope he was a radiologist - I suppose it could have been a pharma rep), multiple residents, a surgeon, and a team of pathologists on hand to make sure the right sample (and enough of it) was taken. Cool.

Result: Inconclusive.

This time it was a bit more telling. I had already done enough research to know that needle biopsies are often useless against sneaky little Hodgkins cells. I was then told to get an open biopsy (surgery) so that a larger chunk could be taken.

Showed up to the hospital, got the hideous IV put in... and the surgeon came in and said that he wanted to wait on the procedure in order to get a second opinion from an oncologist because I just didn't seem like I had cancer. Well, that was good news. There was some hope. Until I saw the oncologist who took a quick look, listened to my chest and said it was 'definitely something significant'. That's when Dan and I both came to terms with the fact that what we had left to hope for was that it was Hodgkins and not something worse. That took a few days to swallow. In the meantime I was scheduled for that biopsy.

So I had that done this Monday. Originally, the oncologist had told me I was going to just have a little more tissue taken out and the surgeon said it would be under light sedation. I arrived, got all ready to go and was sent down to the anesthesia room where the anesthesiologist freaked that I was pregnant and nearly refused to do the anesthesia (which had now suddenly become 'general anesthesia' for removal of a whole cluster of lymph nodes). After some stern convincing that it was necessary by my surgeon he reluctantly agreed - forcing me to sign a waiver with a hand-written note that said something like 'this could kill her baby and she's okay with it'. I cried the rest of the way down to the OR. They didn't warn me when they would be starting to give the anesthesia and I wanted to ask them if they were going to monitor the baby's heartbeat during the procedure. I was about to ask and started feeling really drowsy... and completely pissed off. I was NOT going to go out until they answered my question. So I bit a big hole in my lip to wake up enough to demand an answer (it was "No" in case anybody's interested) and fell asleep.

Woke up to a sore throat from the breathing tube, a sore neck from the surgery and a ridiculously maimed lip from the stupid anesthesiologist not answering my questions in a timely manner. But the nurses were kind enough to check the baby's heartbeat repeatedly (in my post-op stupor I kept forgetting that I had already asked them to do it) and everything was fine.

Wasn't sure if I was going to be allowed to go home Monday night but was fortunate enough to get the thumbs up from the surgeon. Getting the IVs out was the best part of the day. I asked if I could go to work on Tuesday (the next day) and the surgeon laughed and said to ask him the following Monday. I worked from home. Don't tell the surgeon.

So this week has been full of fun aches and pains. I got to stare at the bottle of Vicodin that I was refusing to take (side effects with pregnancy) and pretend that the Tylenol I was taking was working. But as the week went on it got better. I still refuse to look at the incision. It's gotta be gross. Good thing hubby Dan is a lead-stomached medical first responder. I rely on him to let me know if my brains are leaking out my neck and change the bandages. I also found out I'm allergic to the paper tape used to hold gauze to skin. Again, cosmos: good one.

So then to today. It would have been a lot harder to take if we hadn't suspected what was coming. Not that it was easy. There had always been some hope. But I try to see the bright side and am thankful that even though there are no guarantees - it's a battle that can be fought and won. The hardest part has been telling everyone I have Hodgkins Lymphoma. For some reason that just seems to turn it that much more into reality. A necessary step.

So that's how we got here. Sorry for the long-windedness.

Hope this blog can help everyone stay in touch with what's going on and feel a part of the story. I'll be doing my best to give it a good ending - gotta keep hope enough for two. Your thoughts and comments along the way will be a great help as well so please feel free to leave some when you can.

xoxo

Jennie