When You're Slaying the Dragon, but Get Taken out by a Trap Door

 Let's start with some good news. I went for a PET/CT scan on Monday. My usual hospital is currently replacing their scanner, so I had to go to a new hospital whose scanner is in a mobile unit outside the building. 

Great scanning powers, itty bitty little living space

Although my doctor sent the images from my prior scan over to this new hospital, the radiologist felt that it wasn't his job to compare the films and gave one of the least helpful scan interpretations I've ever gotten. My doctor was obviously not satisfied with that, so he had the new images sent over to my usual hospital. After reviewing them, he said that this scan looks even better than the last one and that it doesn't look like there's any Hodgkin's in my lungs.

That's the slaying the dragon part. Huzzah. For at least the time being, it seems we have the Hodgkin's under control.

But woo boy does it seem like everything else is f*cked. 

Since my last post, I went on steroids to try to boost my platelets. We also tried IV IG to boost my platelets. Eventually we started N-Plate injections for the platelets. After 3 or so months of my platelets hovering around or below 10, we finally saw some improvement over the last 3 weeks. On Tuesday my count was 113, and a week prior it had been 112. That's still low, but it's less scary than single digits.

Steroids, if you don't know this, are like magic. They can give you wonderful things (like energy, an appetite, and the ability to breathe normally), but they come with a price. You also don't just take steroids for a day or two. Depending on what dose you start on, you can be tapering off them for weeks or months. My face had started to swell up a bit, but far more concerning was how large my stomach was getting. Steroids cause your body to take fat from places like your legs and butt, and move it to your stomach. I don't know why. Yes, it is weird. So when my stomach got all swollen and distended, I assumed it was the steroids fault.

I've been off the steroids for like two weeks now though, and my stomach is worse than ever. It's constantly distended and taut. I feel full all the time and eating makes me feel miserable. Today I went for a portal vein study, which is an ultrasound that looks at the blood flow to and from my liver. It seems like maybe my doctor suspects liver cirrhosis, which would actually explain a lot of my symptoms. Swollen ankles and feet, shortness of breath, weakness. We'll have to see what he says at my next appointment though. I've panicked myself about my liver before and that was a false alarm. 

Overall, I'm back to feeling pretty cruddy. Just walking slowly upstairs to go to bed takes my oxygen saturation down to 86-92 and shoots my heat rate up to around 130. I have to keep my legs elevated or they swell and then hurt. And my dry mouth is still so bad that I have to eat soups or very wet foods. I also just don't feel motivated to do anything, even crochet or watch tv. 

But we are going to clench onto that good news about the Hodgkins and keep pushing forward. I refuse (or at least very strongly object) to have battled this cancer dragon for so long and then get beaten by something like low platelets. 

The Eyes Have it

I know I owe you guys an update, but quarantine is kind of a drag. I have an Ativan prescription that I can take as needed and if I'm being honest I've needed it more lately. The threat of cancer killing me was one thing. The chance of catching and dying of COVID-19 while fighting cancer is a whole other thing. Especially when so many people are either denying it's a thing and/or trying to reopen things too soon and cause a spike. **deep breaths**

So I've been avoiding updating you about my existenital dread because I know everyone has plenty of their own right now. But I don't want to worry anyone, so here's the latest...

Sometime around March 20th or so, I accidentally poked myself in the eye. I put over-the-counter eyedrops (Systane Ultra) in my eyes probably 50+ times a day. My GvH dries out my eyes and causes irritation, pain, and occasionally vision issues. And the drops cause gunk to build up on my eyelashes and eyelids, which is also an irritant. So I fuss at my eyes all the time... for like the last eight years. Poking myself in the eye was new, but not shocking considering how much I mess with them. But boy did it turn in to a whole thing.

It turns out my poke created an abrasion and it eventually got bad enough that I couldn't keep my eye open or tolerate any light. So I had to go see an eye doctor. During quarantine. Oof. I have since seen three eye doctors a total of ten times. At one point I had abrasions in both eyes (the second one due solely to dryness). I've been on five different prescription eye drops, three different over-the-counter drops, had multiple bandage contacts, switched to preservative-free Systane Ultra vials, and I have an appointment to get serum eye drops which are made from my literal blood. It's been a total pain, but the eye doctors are amazing and they're working to try to improve my eye GvH, so that's wonderful.

So now my eye abrasions are finally all healed. I get to stop the antibiotic eyedrop and reduce the frequency of the steroid drop. I'm going to try a medicine called Xiidra, which will hopefully help with my eye dryness. We may also try puntal plugs, which plug your tear ducts. At this point I'm willing to try just about anything, but also happy to have two weeks until my next eye appointment.

My last chemo treatment went okay. Weirdly, I had a reaction to my pre-meds, which are meant to keep me from having a reaction to my chemo.

One of my veins had a hard, swollen area AND I had a few hives!

But we switched the location of my IV and things went smoothly after that. I felt drained for about a week afterwards and spent a lot of time just sitting in our oversized comfy chair. My fingernails have gotten brittle and on a couple of them you can see lines that I'm certain correspond to chemo treatments. My other side effects have stayed about the same. No fun, but we're getting through.

It turns out, I only have one round of this chemo left to go. After that we'll wait a few weeks and then have a PET scan to see how things look. Hopefully the cancer has shrunk even further or disappeared altogether. Dr. Essell is hopeful that these treatments might be enough to keep the cancer under control for a year or two. That's our best case scenario. After that we'll have to look at other options.

At my last appointment Dr. Essell mentioned that at a recent conference he happened to have the ear of the Hodgkin's Lymphoma specialist at the Mayo Clinic. This guy is probably one of the world's top experts on Hodgkin's. And given this opportunity, Dr. Essell asked this expert amout MY case! The expert believes that even with my GvH, I may still be a candidate for immunotherapy options. So that's probably our plan for whenever the cancer comes back.

It's so frustrating to know that this chemo won't keep the cancer away forever. When you go through so much nastiness and worry, you want the payoff to be bigger. But after those really awful PET scans, I'm incredibly lucky we found something that has worked so well.

Shawntel and the Terrible, Horrible, No Good, Very Bad News

We've gotten bad news you guys. I'll go into more details in this post, but it boils down to this: My most recent PET scan shows my cancer in my lungs exploding. It's growing larger and more intense at a terrifying speed. My resting heartbeat is around 114 and I can't walk from one room to another without getting a little out of breath. Bad news all around.

More details:

After my last post I had two Adcetris treatments and was feeling much better. I was breathing easier and able to get back to some around-the-house chores. Dr. Essell wanted to get a scan a little early, which we did just before my third treatment was due. That scan was really promising. My cancer had shrunk almost everywhere. The cancer spots in my lungs seemed resistant, but they'd either shrunk a tiny bit or remained the same. It seemed like we were moving in the right direction.

But I began experiencing neuropathy in my hands. At first, it was just tingling in my fingertips but it steadily got worse. I began dropping things (because I couldn't gauge the right pressure to hold them) and I started losing hot/cold sensations in my fingertips. Plus the tingling had moved all the way up my fingertips and was threatening to move into my palms. Dr. Essell had warned that we needed to keep an eye on the neuropathy because it can become permanent. So on the day I went for my fifth treatment (12/30/19), Dr. Essell decided to hold treatment due to the neuropathy.

I'd also started regressing a bit with my breathing. I was getting winded more easily again, even before we discontinued treatments.

So it was time for another PET scan (not according to insurance, but Dr. Essell again convinced insurance it was necessary to do a bit early). And he was so right. I went January 10th for my scan. My last treatment had been December 9th, just one month prior. But the scan was shockingly worse than we could have expected. Some areas of cancer had more than doubled in size and intensity. There were other, new areas showing up where the cancer has grown in new places. There was no improvement, only significant worsening. If the scan that rediagnosed me was my worst scan ever, this scan was probably at least twice as bad.

That's were we are now. I have absolutely no energy to do anything. Even things you sit and do. I don't watch tv. I don't crochet. I just sit. And even with that zero-level of activity, my heart rate is averaging around 114 bpm. The cancer has also been causing me to have fevers every day for over a month now. That lack of temperature regulation, and just the cancer in general, is also giving me night sweats. Night sweats are gross and a big inconvenience when your washer and dryer are two flights of stairs down from your sweaty sheets. Blech.

In what is maybe a tiny bit of good news, we've weaned me off more immunosuppression. I'm just taking one Jakafi per day (down from two a day). It's possible that's going well. It's also possible that worsening GvH is causing my heart rate increase. Tough to tell, but for additional treatment options to be on the table, I need to get off the immunosuppressants.

What's the plan then? Well it's not a plan B, plan C, or even plan F. We've burned through a lot of plans in past bouts with my cancer. But there is a plan. Starting tomorrow (1/21) I'll be going back on the Adcetris and pairing it with another chemotherapy. My breathing decline while I was still on the Adcetris treatments probably indicates that my cancer was becoming resistant to that treatment. So we can't simply go back to that alone. We're adding the new chemo hoping that it is effective on the cancer in my lungs (and elsewhere). We'll monitor how I'm feeling and eventually we'll get another scan. 

We'll also continue trying to taper my immunosuppression. If the Adcetris/chemo combo doesn't work, my remaining options are the immunotherapy that I mentioned in my last post. That runs the serious risk of spiking my GvH and my GvH killing me instead of the cancer. There's also a CAR-T therapy trial that I might be eligible for, but trials are scary because in my case it would very much be sort of a last ditch effort. But we're running low on options.

It's also worth remembering that my organs have already been through the wringer. My favorite musician, Jason Isbell, has a lyric that goes "heart, like a rebuilt part, I don't know how much it's got left." My body is sort of like that. I've already asked it to endure a lot, so more chemo is beating down a body that's already pretty beat down.

All of which is to say, we're doing our best to keep our heads up over here, but we're honestly all pretty scared. This is scary news. There's no other way to spin it. 

Cancer: The Reboot of the Sequels to the Unwanted First Five Episodes

Horror movies are notorious for continuing to come out with sequels long after you were CERTAIN the bad guy couldn't possibly have survived that last ending. In much the same vein, my Hodgkin's lymphoma has decided to reprise its role in my chest. An unwanted new chapter in a saga that even my doctor promised me was LONG over.

So how did we get here? I haven't posted since 2017, so there's quite a gap, but I'll catch you up as quickly as I can.

The Imbruvica from my last post? It made me feel like hot garbage and it also caused lumps to start growing under my skin (extra points because that was not a known side effect). We tried decreasing my dose but it didn't help. So I was taken off of it before it ever had a chance to have any impact on my GvH.

Later, I started a drug called Jakafi. The details are not super important for this post, but I've been on it for awhile and it's supposed to be helping with my GvH. The GvH isn't really any worse, but it isn't a whole ton better either. It's very livable though, more an inconvenience than an active threat.

I started having more issues with my breathing and my lungs. We did two bronchoscopies and two or three CT scans. The scans looked different every time, but always concerning in some new way. The bronchs didn't turn up anything helpful. It looked like my lung was slowly collapsing and that other parts of my lungs were being overtaken by scar tissue. I was getting winded at the smallest things. I finally broke down and got a handicapped placard because walking on even the slightest uphill grade was exhausting.

That more or less brings us up to the last month. I'd had another CT that showed concerning lung images and we scheduled a third bronch. My pulmonologist took a biopsy during the bronchoscopy and that turned out to be where everything started to come unraveled. Initially, the local lab couldn't identify the cells in the biopsy. So they sent the cells to a world-renowned expert in Nebraska...who also couldn't identify the cells at first. But the guy in Nebraska WAS able to say that the cells were definitely abnormal. That bought me a PET/CT scan.

Several years ago, Medicare ruled that a person could only have 3 PET scans in their lifetime. I had already had probably 15 or more, so that meant no more fancy scans for me. But PET scans are the best scans for imaging Hodgkin's. They can show the size and intensity of any cancer that shows up. Plus they're in color! So without a PET scan we had no idea that what we were seeing on the CT scans was cancer. And we didn't have much reason to suspect it because Hodgkin's doesn't relapse after seven years of remission. It just doesn't. Except when it does.

So the abnormal cells in my biopsy were a good enough reason to get Medicare to spring for a PET scan. My first in years! I was really very excited because I hadn't had a PET in so long and I knew the images were infinitely better.

And boy did we get images. I have Hodgkin's in my lymph nodes. I have it in my lungs. You guys, I have it in my BONES. My literal bones. This is the worst scan I have *ever* had. By a lot.

Ugh. Ugh forever.

So today I started treatment for my shiny new Hodgkin's lymphoma. The reboot no one asked for or wanted. I'm starting with a chemo I've had before called Adcetris (or Brentuximab). We used it both before and after my second stem cell transplant and both times it was 100% effective at eliminating the cancer. I'm optimistic about that.

We're also taking me off some of my immune suppressants, with the goal of eventually getting me off them entirely. We have to be careful with that though. Without the Immune suppressants, my GvH could flare again (like when I had myositis) and that could try to kill me. But we want my donor immune system to do what I got it for in the first place: fight the cancer. The less we suppress it, the harder it can fight.

If I manage to get completely off the the immune suppression and my GvH isn't out of control, then I can try immunotherapy to further treat the cancer. It's a newer option and is wildly effective. If it had been available in 2012, I most likely never would have had a second stem cell transplant. But I'm honestly not overly optimistic that my GvH will cooperate for that. It could be an option though.

The plan for now is to do four cycles of Adcetris, which I go to get every three weeks, and then to have another PET after the fourth dose has had time to do its thing. If I'm lucky, I won't have many side effects from the Adcetris. I didn't the last time. But you never know. We'll reassess then and plot a continuing plan of attack.

Overall I'm just so bummed about all of it. Not angry, not terrified, not weepy. Just tired and SO over it. I've done this all before. The diagnosis is the same. The treatment is the same. Admittedly, the scan and the starting point are worse, but it's all so sickeningly familiar. I DID THIS. I beat it. We celebrated.

But the bad guy wasn't dead after all.

Day 100, or Look Ma, No Tails!

Friday marked the 100th day since I received my donor's stem cells (which is technically considered the day of the transplant). Since then I've lost my hair, had complications from graft vs. host disease (GvH), swollen up from steroids, and been on doctor's restrictions (aka house arrest). But I've also gotten the GvH under control (mostly), slowly reduced my steroid dose, and continued eating, breathing, and spending time with Brynn. It hasn't been the easiest hundred days, but it's been one hundred days I might not have otherwise seen.

To mark the occasion, I had a PET/CT scan, which will show whether the cancer is regrowing or not, AND I had my "line" taken out. I won't know the results of the scan until next week, so we can all wait in (sc)anticipation. Getting the line out was a long awaited moment of relief though. For those of you who aren't familiar, the line I'm referring to was my triple lumen Hickman catheter. It was "installed" in my chest the day I checked into the hospital for the transplant...all the way back in April. Since then I've had what amounts to an open wound just next to my shoulder! It's like a friendly invitation to germs, "Just come right on in, the blood flow is fine." Thanks to a great team of nurses who changed my dressing (which I called my "sticker") and flushed out the line twice a week, I was able to stave off getting an infection. But it meant careful showering, daily attentiveness, not yanking the thing out accidentally (it was over a foot long!), and always having "tails" poking under my shirts.

Having the line installed was a big deal. I was anesthetized, taken back to surgery, and billed out the wazoo. So I was surprised when I overheard a nurse telling another patient not to worry, because even a monkey could take out these lines. I was even more surprised when I was sent, not to surgery, but just to my surgeon's office to have it removed. He snipped a couple of stitches, numbed the area just around the line itself, and slowly pulled it out. That was it. It took me ten times as long to drive home from his office as it did to actually take the line out. Don't worry though, I'm sure I'll still get billed out the wazoo. It was well worth it though. When the surgeon saw me looking at the line laying limply on his instrument tray, he warned me that I couldn't take it with me. I told him I had no such intention and that if I never see another Hickman catheter it'll be too soon.

The future home of yet another visible-when-I-wear-a-strapless-dress scar.

Day 100 also marks the loosening of my restrictions. I still need to avoid crowds and germs, but I can go more places and eat more things. My doctor suggested carry-out instead of dine-in, but either is a big improvement over having to cook every night for months. And of course I'm going to be smart about where I go and what I do. While I very much want to just get back to "normal," I know that taking any ill-advised risks could put me back in the hospital or worse. My immune system is still a puny weakling. That means it's  easier to avoid germy situations and stay healthy than it is to get better. So I'll continue to follow most of my restrictions, but that doesn't mean I won't be hitting the road. After 100 days of house arrest, a road trip might be just what the doctor* ordered.

(*metaphorically only, my actual doctor would have me live in a bubble if at all reasonable)

Hair Today, Gone Tomorrow

Today was the day I "let my hair down." Way down. Like all-the-way-to-the-shower-drain down. Almost every person who has received certain kinds of chemo (like the kinds I received to kick off my transplant) will awake one morning, look at their pillow, and see something remarkably like this...

Thank goodness Rapunzel didn't have this problem.

This is my 3rd turn at waking up to a hair coated pillow. Nothing prepared me for the first time, and not even the memory of the first loss quite prepared me for the second time. This round though, I was ready. So ready in fact that I beat the process. Many of you have already seen this, but here's Brynn cutting off my hair to send it to Pantene's Beatiful Lengths program to be made into wigs for cancer patients. Ironic wigs.

Youtube Video of the Hair Cutting

Some people lose their hair in patches, but mine just thins all over. Gradually at first but then much more rapidly. Despite clogging the shower drain with my locks, I still have enough hair tonight to perhaps have the loss go unnoticed. Tonight's sleep and tomorrow's shower won't be as kind. So I think the plan is to have one of the nurses come tomorrow and buzz my hair close to my scalp. It makes the mess on the pillow easier to endure. It also makes it easier to wear the periwinkle/lilac wig I brought just for the occasion. And in the end, like so many other things, it's no use hanging on to my hair. If it's ready to go then I can't make it stay. Luckily it's only hair and I can live without it.  And, if all goes well, I'll be growing a whole new crop of it soon.

Special Delivery: One Allogeneic Stem Cell Transplant, International Style

Ordinarily, stem cell transplants happen during the daytime, when first shift people are busily doing their first shift jobs. I'm not one for ordinary though, so when my stem cells arrived at the airport on an international flight around 8pm, we started gearing up for a late night stem cell infusion.

I was given pre-meds, like Benadryl and anti-nausea medications, so that I was as prepared as possible for the known side effects of receiving stem cells. Before the end of the night, I'd get more of each of those meds. There were additional concerns because, although my donor is a perfect match on 10 of 10 genetic markers, she has a different blood type than I do. So we knew my body might not take kindly to the cells.

♪ "Me and my stem cells..." ♪  (to the tune of the "My Buddy" or "Kid Sister" doll jingles)

Those concerns proved well founded when I (a) lost my dinner, (b) had an extended coughing fit, and (c) broke out in hives. Things were always under control though. After the infusion was complete I was given another (much larger) dose of Benadryl and you'd never have known I had any issues at all. I slept like a rock until 8:30am.

The process of infusing the stem cells was rather boring (apart from my antics). It's really just like getting blood. It takes awhile and you just sit there. Boring or not though, those stem cells are brilliant. Now that they're in my body they know to get into my bone marrow and re-grow an immune system for me. Eventually they'll completely overtake my system and even my blood type will change (to the donor's blood type and blood fingerprint).

What we hope happens is that new immune system will recognize any future cancer growth as foreign and attack it. There are worries with this too. The donor's immune system can mark *all* of me as foreign and start attacking my body from within. Fortunately my doctors are a top notch team and we're taking every precaution to prevent the stem cells from staging a full on coup. Everything from very expensive medications (like Prograf) to additional chemo treatments, help suppress the new immune system and make it less likely to rebel against my body.

A small dose of chemo, to keep my (kind, generous) donor's cells from attacking my body.

From here it's a bit of a waiting game. It will take about 10 days for the donor cells to get up in my marrow and start making any new cells to rejuvenate my immunities. In the mean time I'm taking anti-viral, anti-fungal, and anti-biotic meds to scare away any germs that might wander my way. An infection could be fatal if not caught right away, so I'm extra careful (and you thought I was a germaphobe before!). Now I'm required to wear a face mask if I leave the room for a scenic walk down the hall. Overall though, all the precautions and hiccups are a small price to pay for a shot at really, truly, FINALLY giving this cancer the boot.

A Brief Update to Assure Everyone I'm Still Kicking

It turns out that not all transplants are the same. Of course I knew that going into the hospital, but the only thing I had to base my expectations on was my last transplant. Because of that, I didn't expect to get sick nearly as fast as I did.

During my first transplant (Dec 2009) my first week and a half or so was more about killing boredom than feeling ill. This time around, however, I was feeling green around the gills by day 2, and still don't feel anywhere close to "normal" (though I am feeling better). I've been taking all kinds of medications. Some to kill viruses, some to kill bacteria, some to kill fungus, some to ward off nausea, some to help my donor cells engraft when I get them, and some chemo.

That's 3 bags and a bottle, for those keeping score at home.

I'm taking each day as they come, and some are better than others. I don't always feel like talking, texting, or being on the computer, but I appreciate everyone's love and concern. All the cards and packages I've gotten have cheered me up on dreary days. I miss feeling like myself, but a little bit of rotten right now will hopefully equate to a lot of normal old "myself" time in the long run.

Cat Poop Disease; or The Transplant that Almost Wasn't

Getting to Jewish Hospital by 8am is never easy when you're coming from Northern Kentucky. No matter when you leave the house you're fighting rush hour traffic. This morning was no exception, but I headed out anyway, ready to have a minor surgery and then be admitted to the hospital for 3-12 weeks.

But that almost didn't happen. While I was waiting to register, my transplant coordinator came down to the lobby to inform me that there was an issue with my donor. She wasn't showing any signs of being sick, but her blood work indicated that she could be coming down with an infection. Bad news, since I'm inheriting her immune system and could also be infected.

My primary oncologist was alerted to the news. He would recommend one of 3 options: proceed as planned, wait until this donor was better, or screen an entirely new donor. Either of the last two courses of action would result in a delay of at least a week if not a month or more. Everything was put on stand-by, even my morning surgery, until my doctor could review all the details.

It turns out that my donor might be coming down with toxoplasmosis, a disease contracted and spread mostly by cats. When my doctor explained the whole situation (and recommended proceeding as planned) all I could do was cock my head to the side and say in disbelief, "Cat poop disease? Really?" I laughed so hard I almost cried. Somehow I just couldn't believe that a parasitic litterbox somewhere in Germany (where my donor is from) could be a matter of life and death for me. But it is.

After a good, exhaustion-driven laugh, we decided to move forward with the transplant process now.

Step one was to install a triple lumen Hickman catheter. This is a tube that comes straight out of my upper chest near my shoulder and provides 3 lines of access into my bloodstream. Doctors and nurses love it. I like not getting stuck with needles all day long, but I hate the "line." I'm always super stressed that some tiny little germ is going to sneak into me around the area with the open hole into my body. It's a necessary evil though for the transplant, so it's installed.

The way to this girl's heart is now directly accessible.

Next I was admitted into my room, allowed to change back to my non-hospital-gown clothes, and then started on my first dose of chemo. The idea is that the chemo will eliminate any remaining bits of cancer as well as lessen my immune system (so the donor's immune system has room to move in and make itself at home). Today's chemo was called Melphalan and infused over just 30 minutes. I was so exhausted that I slept through the whole thing and don't even remember my nurse unhooking the i.v. bag!

I'm feeling pretty good all things considered. Not much pain from the line. Just a headache and sore throat from the chemo. Hopefully the sore throat isn't foreshadowing mouth sores, but we'll cross that bridge if we get there. (12:30a update: developed nausea and it's aftermath, but took meds to get rid of it. Blech!) For now I'm just hanging out in my smallish, decoration-less room.

There's more wall space than you can see here.

If you'd like to see your card, postcard, or other fun mail featured here, check out my last post here: http://sintelligently.blogspot.com/2012_03_01_archive.html
All mail is greatly appreciated (and anticipated)!

This is home for the next few weeks, help make it homey!

Mail Call!: A Plea for Letters, Cards, and Other Forms of USPS Love

As many of you are aware, I'll be checking into Jewish Hospital in Cincinnati for a second stem cell transplant on April 11, 2012 to try to kick this latest recurrence of Hodgkin's Lymphoma (and to keep it at bay for good!) The transplant process itself is simple, but the preparation and especially the recovery are much, MUCH longer processes. In all my stay will be 3 weeks at the very *minimum* and could stretch out as long as 12 weeks. It's a difficult time, as I will not be allowed to leave the transplant unit (my room and 2 short hallways). Frequently people are quarantined to their rooms, which happened to me during my first transplant. "Stir crazy" and "cabin fever" don't even begin to describe it. What's worse is that Brynn will not be allowed to visit me the entire time I'm in the hospital since the rules of the unit require visitors to be 14 years old. She'll celebrate her 11th birthday without me, since I'll be in the hospital. I missed Christmas with her during my first transplant. We skype, but it's not the same.

And so, I've decided to ask a favor.

Two favors actually.

First, I would love for everyone to send Brynn a birthday card. Her birthday is at the beginning of May, but you can send a card anytime between now and then and I'll hold onto them for her until the big day. A belated card or two would be fine as well. Who doesn't love for their birthday to stretch on for a few days afterwards? For friends who would like to send Brynn a little something, she likes art supplies, journals, fun writing utensils (like gel pens and clicky pencils that click on the side not the top), hair accessories, and anything having to do with fashion design. She loves books, music, and clothes too, but she's a lot pickier about those! Must be a tween thing. Again though, I'm just asking for folks to flood her with birthday wishes (in card, letter, or postcard form), no gifts required or even requested.

Those can be sent to:
Brynn Ensminger
P.O. Box 598
Burlington, KY 41005

The second favor is similar, but more selfish. I'd like you to send *me* cards and packages. Days in the hospital are monotonous and the room itself is unexciting and impersonal. Mostly my stay is just a waiting game. My donor's stem cells will take some time to get into my marrow and create a new immune system for me. In the interim I have to hang out at the hospital and, let's face it, a person can only check facebook so many times a day (though I'm entirely unwilling to admit how many times that is). So entertain me! Here are some things I think it would be fun to get:
- a fun postcard from where you're from to hang up in my room
- any sort of card (get well and encouragement are great, but creative and funny cards are more than welcome too!)
- letters (same as with cards, I'd love anything from encouragement to snarkiness)
- a copy of your favorite cd or a mix cd of your favorite songs (go on, expand my horizons)
- your favorite book (unless your favorite book is Homi Bhabha's The Location of Culture)
- fun activity books, like logic puzzles, sudoku, etc.
- small decorations to put around the room. I don't have much counter space, but I have a bit and I can hang things
- your favorite movie (I believe the room has both a VHS and a DVD player). Movie recommendations from Netflix are great too!
- anything else a person can do when confined to a single room for 3-12 weeks. Be creative!

There are a few restrictions though, for health purposes. Please DON'T send:
- any plant materials, including live or dried flowers
- homecooked foods. This one really hurts. I loved baked goods, but I'm only allowed to eat foods that are ordered off the hospital's menu or food that is individually packaged and sealed (like frozen dinners, cans of soup, or small bags of chips/cookies).
- germs. Please wait to send stuff if you or a family member have the plague.

My address at the hospital (starting April 11th) is:
Shawntel Ensminger
c/o Bone & Marrow Transplant Center
4777 E. Galbraith Rd.
Cincinnati, OH 45236

If any cards or packages arrive after I've been discharged the hospital will forward those to me at home, so don't worry about my check out date (though you'll be sure to hear about that on the blog!)Every single card and letter will be appreciated so much!

A few of the cards and decorations from transplant 1.0

Also, feel free to share this entry with others. The more cards, letters, and well wishers, the better!

Bone Marrow Biopsies Literally Suck...with a bonus Dexter souveneir

Bone marrow has fascinated researchers for decades. It's amazing really, producing hundreds of billions of blood cells every day as well as lymphocytes for your immune system. It is also, unfortunately, notoriously difficult to get to. Luckily for me, doctors manage to do it anyway like in the bone marrow biopsy I had yesterday.

The day's visit began with collecting a vial or two (or 15) of blood to run all sorts of pre-transplant tests. Basically any disease they can test for using blood gets tested. If I currently have some sort of disease or infection that my body is masking or simply carrying, that illness could develop in full force once we deplete my immune system. We run all these blood tests to be sure I'm completely healthy...you know, other than the cancer.

We took so much blood from one vein it collapsed and we had to stick a second one!

Then it was off for the day's main event, my third ever bone marrow biopsy. I'll never forget the first one. It was easily the most concentrated, intense pain I've been in in my entire life (and I've had a baby)! I actually lost the ability to form words and could only scream in awful shrieky noises. (Yes, yes, shout out to Elaine Scarry for those who have read her.) My subsequent marrow biopsies have been much more tolerable, although still not my favorite way to spend a Tuesday.

In order to prepare for the biopsy my doctor ordered me to take four Ativan (.5mg each) before arriving at his office, and two more once I go there if I was still feeling anxious. For those who aren't familiar, Ativan (aka lorazepam) is an anti-anxiety medication that chills you out and makes my memories of traumatic experiences kind of warm and fuzzy around the edges. So six Ativan later I was ready for my procedure.

Transplant coodinator (to me): How are you feeling? ...other than high?
Me (smiling): I don't think I'm feeling anything *other* than high.

You'd want to be high too. That's only part of the needle.

Shortly thereafter I was rolled on my side and the doctor began preparing the site where he was about to dig for marrow. I think they roll you on your side so you can't see the torture instruments they keep back behind you, but they assure me it's just the easiest position for access to the bone. I'm skeptical.

At this point I'm a little fuzzy on how things proceeded. Cut me some slack, I couldn't see what was going on and I was drugged. The version I remember is mainly a series of me thinking up synonymns for "ouch" and "f*ck* but fortunately my friend took some pictures to help tell a more coherent and less foul-mouthed story.

Step one is, of course, numbing the area. I think they numb at various levels, all the way down to the bone. Just local anesthesia though, I get to be wide awake the whole time. The next steps are all a bit of a jumble, but they use a long needle to get down to my bone, then at some point switch the needle for a small drill to drill into my bone, and they use a suctioning device to suck a sample of marrow out of my bone. I kind of think there's a long thin tube (like a tunnel) that goes down to my bone and they can put different implements through it (like a needle or a drill) but that's just my best guess. I'm pretty sure the sucking part hurts the worst, though the slow drilling part wasn't great either. Pain shot all the way down to my knee, which I suspect was my marrow protesting its abduction.

"Ooh ah, just a little bit...ooh ah a little bit more!"

What they gather (the marrow) looks mostly like blood but it does have some little chunks of bone in it as well.

I was hoping for something a little more rewarding, like molten gold.

Finally the marrow is droppered out onto glass slides to be sent off to a variety of places for testing. First and foremost we'll test to be sure no cancer has snuck down into my marrow, since that can happen with Hodgkin's. I'm not entirely certain what other tests will be performed. Some will be to prepare me for transplant, others will further knowledge on blood cancers and transplants. Before the procedure started I mentioned how all the slides laid out on the counter reminded me of the t.v. series Dexter and his collection of blood slide souvenirs.

Most people would be reminded of looking under microscopes, I think of fictional serial killers.

Once everything was said and done, I was ready to be on my way. I insisted I was just fine to walk out on my own, but apparently I kept leaning on things and the doctor said I went out in a wheelchair, no ifs, ands, or buts. I wasn't happy about it, but I cheered up when they have me my going-home present.

My very own Dexter-esque blood slide!

Some People Get Allergy Shots, I Get Shots of Radioactive Sugar...Still Not a Superhero

Approximately every 3 months I go to the hospital for a PET/CT scan. I've been doing this for years now. I'd love it if they had a punch card for regular customers. The very sweet ladies who work at the radiology check-in desk recognize me now and comment on how long my hair is getting. Each scan retails for about $4,000 or so.

Still, scans are fantastic because they are the only way for me to tell if my cancer is responding to treatment. Since I don't have any physical signs of having cancer right now, there's no way to know if the cancer is retreating or charging forward...until a scan.

The scans themselves are rather dull. I arrive at the hospital after fasting since the evening before. A couple times in the past I had to drink the barium "milkshakes" before a scan, but haven't been "treated" to those in a long time now. I just go in, answer a few quick questions, and get a finger stick to check my blood sugar. Assuming my blood sugar isn't too high (and it never has been) then I get injected with radioactive sugar (aka. the tracer). This is my favorite part. The sugar comes in a plastic syringe (just like any other injection) but because it's radioactive there is a thick, heavy *lead* protective outer cover. It always makes me think of Superman and kryptonite. Except in this scenario everyone in the radiology department has a weakness to it, but they're gonna inject it directly into my veins and let me metabolize it for 45 minutes. I'm not a superhero yet, but I'm taking my vitamins.

What's that "special glow"? Radiation!

After the tracer is coursing though my body, the staff dims the lights and leaves me in a quiet room for about 45 minutes or an hour, presumably to see if I turn into the hulk or bite any unassuming, non-radioactive spiders. That hasn't happened yet (blech, spiders), but what usually does happen is that in any areas in my body where cells are reproducing rapidly (you know, like cancer cells) the radioactive sugar is sucked up because those cells require the energy the sugar provides to keep reproducing so quickly. Then they run me through a machine that takes cross-section pictures all up and down my body to see what bits are lighting up as radioactive, and if those bits are any bigger than they were the last time I had a scan. For me it just means lying still with my arms above my head for about 30 minutes. Then I'm finished, which by this time is a huge relief because I've not eaten in awhile and could really go for some lunch.

And yet, while I'm generally bored by the scan procedure itself, I do appreciate the almost magical technology setting us apart from a century or two ago when I'd probably be going for blood-letting instead of radiation enhanced pictures of my innards.

My $15,000+ Day... or Treatment Day 1

Yesterday was my first day of treatment. Everything went smoothly. Brynn arrived for her first day of school on time and without a hitch. I made it to my appointment almost on time. Despite having a minor infection we were still able to proceed with the first round of Adcetris.

The treatment itself started with pre-meds. Tylenol, Benadryl (to prevent an allergic reaction), a light steroid, and anti-nausea medication. The Benadryl knocked me out almost immediately. I fought my falling eyelids as hard as I could, but eventually had to tell my friend (who drove me to and from my appointment) that I was going to have to nap.

I did wake up long enough to joke with my nurse about giving me my new car. Unfortunately I wasn't really getting a new vehicle, just its cost equivalent in medication. It turns out that each of my treatments require 3 vials of Adcetris, and each vial markets for about $5,000. That means when he brought this tiny little bag in and plugged it into my IV, I began the process of absorbing $15,000 into my system.

Too bad it doesn't have a street value.

I can't complain though. It's been over 24 hours and I'm not experiencing any side effects. I did sleep for several hours yesterday, but that was just to wear off the Benadryl. I'm not nauseous, I don't feel cruddy, I'm still eating whatever I want. Actually, I feel pretty normal. We'll see over the next few days, but I'm feeling good about how my body is handling it so far.

The Unambiguous News

I don't like waiting in anticipation for PET scan results. Assuming you don't either, I'll just go ahead and tell you the doctor was very pleased with my scan. It looks exactly like the last scan (which was ambiguous) but that means there was no new growth, which means no cancer. (Woo hoo!!!)

                          Here's a cancer-free me sliding into the tube for my PET/CT scan.


Now that that's out of the way I have an admission to make. I was so impatient about getting my results that I called the hospital yesterday and asked if I could pick up a copy of my scan results. After the scan a radiologist looks through the images from my scan, compares them to the images from the prior scan, and types up his or her "impression" of the scan. What I'm able to pick up is that "impression." Generally doctors frown on you getting results before they have a chance to look over them and interpret them for you, but I just couldn't resist. So I knew yesterday that this scan was basically a carbon copy of the last scan, which I also knew was good news. I may or may not have squealed in the hospital parking lot. The way I look at it, I exerted significant self-control in making it to the parking lot before I had an outburst.

To my surprise the doctor had even better news for me. He says a very aggressive cancer (and mine was a bully) is most likely to come back within two years, if it's going to come back at all. This upcoming December is the two year anniversary of my transplant, so he is increasingly confident that I'm almost in the clear. Of course any cancer can relapse, but statistically speaking I'm in a good place. We'll do another scan in three months and if we get good results then we will push the scans back to every six months! I love the confidence associated with less frequent scans. I also love the $1,200 or so I'll save a year by spacing them out.

So today = success. The outlook seems good. I think old sir Hodgkin's has hit the road. That's good news because I have a back log of things that I plan to do. It's nice to know that I have plenty of time now.

(Sc)anticipation

Almost every time I've gone in for a scan it was supposed to be a defining moment in this battle against Hodgkin's Lymphoma. Either it was expected to confirm the cancer was gone or that more treatment was needed. Tormentingly, it's rarely turned out to be so clear cut. Once it looked like the cancer was definitely back, but the biopsy only showed scar tissue. Then we thought we had it beat but the following scan looked more ambiguous. So tomorrow's scan is supposed to define the ambiguity. I hope it does. I'm not sure my nerves can handle three more months of non-committal cancer. (To be clear, I'm hoping the commitment is to the cancer being gone, not starting another long term relationship with dear old Hodgkin's).

I generally try to play it cool when people ask about the cancer. Things genuinely have been going pretty well. I feel great, my hair is getting longer, chemo is just a memory. And yet these scans never fail to get me worked up. Every twinge in my chest or ache in my back puts me on high alert. I twist around, I stretch, I try to identify exactly where the pain is originating and then I compare it to a chart of where my lymph nodes are. I also rub my neck and arm pits at least every other day to see if I notice any swollen nodes. And the neurotic checking and worrying only intensifies as the scans get closer.

For about a month after a scan, I'm still focused on the most recent results. Surely not much has changed, right? By the second month I start thinking about little pains and what they might mean. I start reading too much into back pain that's probably caused by sitting in an arm chair for hours working on a powerpoint. When month three rolls around I put my life into a full fledged holding pattern. I don't apply for jobs, I don't go on dates, and I (apparently) cannot bring myself to make important plans for the upcoming semester. I don't do any of these things (and quite a few others) because all I can think about is "WHAT IF the cancer is back?" I've heard about paralyzing fear that causes someone to physically freeze up, but this fear paralyzes my personal and professional life. It's like WWJD for cancer patients/survivors. Every decision, big or small, is made in the shadow of the looming concern of What if the Cancer's Back? In this past month alone I've skipped applying for a job in the fall that was perfect for me and would provide much needed income, I've avoided putting my fall syllabus together, and well...let's not even talk about dating.

So tomorrow I will go to the hospital where they'll inject me with radioactive sugar and run me through a high-tech tube that will take thousands of images of my innards and determine my physical and psychological well being for the next three months. For those of you interested, a friend told me the radioactive sugar is actually "anti-matter," just in case me being radioactive wasn't nerdy enough.

                            An example of the machine that I'll be run through

My anticipation is high and won't abate until Wednesday when my results come back. Until then I'll be pretending that I'm not neurotic, but I suppose that's all relative anyway, right?