Brave (Scary) New Frontiers

 Let me catch you up before I overwhelm you with new updates...

The bronchoscopy results were not helpful. Despite having biopsied from one of the areas that had lit up on my PET scan, the biopsy taken during the bronch came back showing no cancer. The problem is, that result does not mean there's no cancer, it just means there's no cancer in that specific spot we biopsied. And all the tests run from the lavage fluid came back negative as well.

That left us with very little to go on. I went several weeks without seeing my oncologist. It was too soon for another PET scan and without any useful results from the bronch we just didn't know what direction to go. It was nice to have a little down time with no treatment. My fingernails started getting stronger and looking normal again and my hair started to grow back just the tiniest bit. 

But then some of my cancer symptoms started creeping back. I've had a low grade fever for almost 3 weeks now, which initially we thought was a cold, but have eventually admitted is probably a sign my cancer is growing again. I've also had night sweats again and have been frequently feeling worn out. Plus I've started feeling like I have pressure on my chest and it's more laborious to breathe. These things all point to a likelihood that the cancer in my lungs is growing again. 

So after conferring with Dr. Essell, we've decided we're going to try immunotherapy. I've talked about this as an option before, but always as an option that scared me. Immunotherapy will stimulate my immune system, which will hopefully cause it to kill any remaining cancer. But because of my graft vs. host (GVH) disease, it could cause my immune system to flare and attack my body. Basically, my donor immune system would not recognize my body and it would attack my body, but with extra power from us having boosted it.

Immunotherapy is the last treatment option we have that has the potential to put me in any meaningful kind of remission. If the immunotherapy fails or if my body can't handle it because the GVH, we're down to options that can't really put me in remission, that could only hopefully keep me alive a little longer.

So this treatment is double scary. Scary because it may try to kill me itself, but also scary because if it fails we've run out of life-saving options and are only left with hopefully life-prolonging options.

So things are about to get going! I'll go for a new PET scan tomorrow to establish a baseline for when we start the new treatment. I'll also get a COVID test while I'm out tomorrow because I'm scheduled for a minor surgery next week. Once my COVID test is back negative I'll go in to have (ANOTHER) port put in for treatment.

This won't be my first or my second port; it'll be my third. And that's not to mention all the lines that I've also had placed over the years. My chest is a mess and we're not entirely sure there's a place to put another port. The surgeon is going to take a look at my chest and see if there's a spot that will work, but there's a chance they'll actually have to put the port in my leg. If that's the case, it's going to make getting my treatments an interesting affair!

If everything goes smoothly, I'll be getting my first immunotherapy on Friday, August 14th. I'm really nervous about it. So please send lots of good vibes my way. 

Side note: We are still as fully isolated as possible because of COVID-19. We're not eating out or doing takeout from restaurants. Nor are we having any visitors. For the time being please don't send food or flowers, just because we're "quarantining" anything that comes in the house for three days before we bring it all the way into the house. We have to be as careful as possible as we get ready to start this new treatment!

What Comes Next

On May 4-5, I had my last Bendeka/Adcetris treatment. We had a PET scan on June 1st to figure out if the treatment had worked or not. We were hoping the scan would show no cancer. If that was the case, we hoped I would get 1-2 years cancer free before we had to consider more treatment. The Bendeka/Adcetris was never going to be a permanent solution, but we'd hoped it would be a temporary one and that my body would get some time to recover.

Sadly, that's not the case. The news isn't ALL bad, but it's not good news either. The cancer outside my lungs does appear to have cleared up entirely. No cancer in any of the places that Hodgkin's traditionally grows, like in my lymph nodes. Unfortunately, my lungs are a different story. A couple of the places that have been showing up on my scans are still showing up and one or two new places are showing up now too. They're small relative to my worst scan, but they're there. And the places that have been there all along have increased in SUV (intensity) too.

Dr. Essell, my oncologist, on a huge mural that greets us as we get off the elevator.

Before we rush into what will be a risky new treatment for me, we're going to do a bronchoscopy and biopsy a piece of my lung from one of the affected areas. If that biopsy shows Hodgkins (and we expect it will) then we'll move on to the risky new treatment. I'll need a clear COVID-19 test before the bronchoscopy, and I've already gone for that. We haven't gotten the results yet, but I expect it will be negative and the procedure will happen as planned late this week.

A bronchoscopy involves a pulmonologist snaking a tube down into my lung. The tube has a camera so he can look around. The tube will also (1) spray fluid into my lung then recollect the fluid for lab samples and (2) allow the doctor to take a lung biopsy. For those of you following along, you might remember that a lung biopsy from a bronchoscopy is how we initially rediagnosed my cancer this time around.

We assume that will again show the Hodgkin's lymphoma is in my lungs. We're out of any decent chemo options, so we're looking at immunotherapy now. Immunotherapy is a really exciting option for folks who have not had an allogeneic stem cell transplant (one using donor cells). If this immunotherapy option existed in 2011-2012, I likely never would have had a second transplant. It is a relatively easy treatment (compared to a transplant) and can send folks into remission for decades.

But I've already had a donor stem cell transplant and that complicates things. Now my immune system actually doesn't match up perfectly with my body. My immune system is a carbon copy of my donor's immune system, and although we matched very closely, that immune system doesn't always recognize my body as belonging to it. That's what causes graft versus host disease (GvH). My donor immune system (the "graft") doesn't recognize my eyes or the lining of my mouth, or occasionally my muscles (the "host") and the immune system attacks them. Thus all the eye drops and other creams, ointments, and issues.

So Immunotherapy stimulates a person's immune system. In my case though, it's stimulating my donor immune system, which already takes issue with my body. We run the risk of it dramatically stimulating my GvH also. If that happens, we'll discontinue the Immunotherapy and throw a bunch of steroids at whatever flares up. But it's risky. If we don't catch the GvH in time, the steroids might not be enough to stop it from attacking my body, possibly fatally.

Beyond the risks of Immunotherapy, we also don't have many options if Immunotherapy fails. It's potential benefits are amazing. Immunotherapy could eliminate my cancer for years... maybe even decades. But if it spikes my GvH out of control OR if it doesn't work for me, we don't have any further treatment options with much promise. We can try clinical trials or we could do more chemos, but neither offer much promise.

For now we're just hoping I can tolerate the Immunotherapy, that it doesn't overstimulate my GvH. and that it works. It would be amazing if it worked and I went into remission for a really long time. So fingers crossed guys. We need this one to work.

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.

Hives and High Notes

So my first round of Adcetris/Bendeka turned out to be pretty brutal. I had treatment on a Tuesday and Wednesday, and I just felt tired up through that Friday night. But late Friday night and into Saturday morning things got uglier fast. My insides liquefied and I was in and out of the bathroom frequently for the next six days. That and the steroids combined to prevent me from getting much solid sleep too. I had no energy at all. I didn't even want to listen to music or have the tv on. I just wanted to sit in our big chair in the silence and breathe. My resting heart rate hovered around 120 BPM and I just felt like the life had been drained out of me. But after about a week, things started improving just the tiniest bit each day. By the week after that, I started feeling human again. My remaining hair also fell out that week, but at least I was feeling better.

So we expected my second treatment to hit me just as hard. We cancelled a Valentine's road trip we'd planned to go see one of my favorite bands in concert. Sixteen hours round trip in a car sounded like a really terrible idea if my insides were going to liquefy again. As a sort of consolation prize (but also as an early birthday present) Alan got us tickets to see Les Miserables, which just happens to be my very favorite Broadway musical. Unfortunately the run of the show started on my first day of round two of treatment. Reasoning that it would be better to go sooner rather than later, Alan snagged a couple of wonderful seats for that Tuesday night after treatment. 

But some of you might remember that after round one I slept almost all of Tuesday night because they gave me Benadryl as a pre-med. I hadn't experienced any sort of reaction to the treatment though, so I decided to ask if we could skip the Benadryl for round two. And Dr. Essell agreed. My confidence that I'd be okay was the pride before the fall. 

Day one of my second round of treatment went as expected, just without the Benadryl pre-med. Then I came back home, had a bite to eat, and then we headed out to the theater. Things were going great! We arrived early and had plenty of time to make it to our seats. (I move a lot slower these days). The show was wonderful (alright, Fantine started out a little tinny, but she finished strong and Eponine was very nearly perfect). But just before intermission I noticed that my scalp was SUPER itchy and felt warm to the touch. Then that sensation spread to my neck and began spreading across my face. I expected to be a splotchy mess when the lights came up. Luckily it was less noticeable than I feared. We contemplated going home then but I hadn't heard "On my Own" yet and my throat/breathing didn't seem affected at all.

We enter act two with about 1/3 of my body in hives and my scalp (under my toasty warm hat) shrieking to be scratched. I'm certain our seat neighbors thought I had lice instead of cancer. As the hives spread further and further and the play soared on, I felt colder and colder. Seems my hives were accompanied by a fever and by the end of the show I was physically shivering. I also somehow dehydrated so badly I had no saliva in my mouth. Even getting out to the car was an ordeal, as my heartbeat was racing and I had to sit and take breaks. When we finally got home, Alan scurried around getting me Tylenol and Gatorade and blankets and Benadryl. Finally, after about an hour or two, my fever was gone and my itching was bearable. But we heard the people sing!

I had to explain that despite my hives and all the other nastiness, that night actually counted as a win. It's tough to still get out to do the things you love when your body constantly betrays you. But I was able to experience my favorite Broadway musical, even if I was itchy! I won't remember much about the days that I spend resting in the big chair. Those days are necessary, but I'm not making memories. So when I have the chance to make a memory, even if it's an itchy one, that's a win.

Since then, my second round side effects haven't been nearly as bad as they were the first round. I had treatment on a Tuesday and Wednesday and my insides again liquefied Friday night. But that only lasted a day or so. My stomach is still not entirely right, but I can sleep through the night with no urgent trips to the bathroom. I'm still very tired, but music and tv are fine and I can even get up to do things like get myself a Gatorade or a snack. I've also been experiencing a thing where some foods don't taste right. This happened to me in the past with a different chemo, but now it's different foods that taste wrong. My neuropathy in my hands has spread into my palms, but I'm still able to crochet a bit if I pay close attention to what I'm doing. And my heart rate has crept down to where my resting rate is around 100 BPM. So all in all, it's not a picnic, but I'm surprisingly feeling better this round than last!

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. 

Chemo's for the Cancerous...Right?

So it's been a very long time since my last post here. To catch everyone up:
- we raised the down payment for an absolutely amazing house that we continue to be in love with
- Brynn did have to switch to a new school (again) but her grades have increased *dramatically* and she's in loads of honors classes (even honors chemistry!)
- I've continued to be mostly fine. My chronic GvH (graft vs. host) is as annoying as ever. I did land in the hospital again for myositis. That's what almost killed me last time. But this time we caught it much earlier and I was only in for a week, not a month, and never made it as far as the ICU. I'm still pretty weak in general and I get winded going up stairs or walking up a slight uphill grade, but I'm able to work part-time and do some crafting and go fun places with Brynn, so that's nice.
- The new boyfriend I mentioned back at the end of 2014 continues to be amazing and an unwavering support. He's also very funny (he'll tell you so) and makes some of the world's most groan worthy puns...but so do I, so it's a pretty good match.

That mostly brings you up to date. I'm on immunosuppresants, so there've been too many colds, viruses, and infections to mention. And they always drag on foooooor-eeeeev-eeeer because my immune system is, you know, suppressed. But that's really par for the course.

The primary issue is the GvH, and it's usually manageable. I carry eye drops 24/7 that I use all day long because I have dry eyes. My skin gets itchy (especially when it's hot out) or crazy dry when it's cold out. I have all sorts of issues with all my mucus membranes, especially my mouth where I have raw spots all the time. I can't eat spicy foods at all any longer. Pretty regularly I have rough places develop on my scalp, which are both itchy and unattractive. All in all, it's manageable but it isn't any fun.

So imagine my surprise when my doctor told me that a drug had *just* received FDA approval to treat chronic GvH! Up until August 2017, there were no prescription drugs available as a treatment for chronic GvH, so this was big news. It took about a month to negotiate financial assistance type issues. Imbruvica (Ibrutinib), the new drug, runs about $13,000 for a one month supply. Without financial assistance and my insurance (Medicare, which I have through disability) I wouldn't be getting the drug at all. But last week a package arrived on my doorstep, a month's supply of Imbruvica.

The Imbruvica Welcome Package

I began taking the Imbruvica last Wednesday, so I haven't quite been on it a week. It is technically a chemo drug and is used to treat a handful of different varieties of cancer. But I'm not taking it for its chemo properties; I'm taking it to help with the GvH. Unfortunately, the side effects are the same for everyone. So far I've experienced: nausea, light-headedness, loose stools (sorry, TMI, I know), fatigue, loss of appetite, and muscle pain. In all honesty, I feel pretty crappy. I've cancelled a few different commitments because I just constantly feel tired, nauseous, achy, and not-hungry.

Hopefully, my body just needs a little while to adjust to the new medicine and then I won't feel nearly so bad. I have noticed that one of the rough spots on my scalp, that had been quite red and itchy for months, has largely cleared up. I've not noticed any other GvH related improvements yet, but it's only been a week and I'm hopeful that more good things are down the pike. In the meantime I'll just be over here feeling like I'm going through chemo again. Blargh.

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!

No News (is Good News)

I've started getting messages from folks wondering how I'm doing, which probably means it's been too long since I've updated everyone on how my treatments are going. I guess I kept waiting for something eventful to happen so I could report back, but this latest treatment is actually a treat compared to my previous chemos.

After the first round of Adcetris I did have quite a few headaches, but they weren't migraines and could be kept under control with Tylenol. Thank goodness for that, since acetaminophen is the strongest pain killer I'm allowed to take. A few other minor side effects proved to be minor annoyances, but everything has been very manageable. The most significant difference I've noticed is that my body is tired, so when I go to bed I'm liable to sleep for 10-12 hours some days. While I'm awake though, I don't feel overly fatigued. All in all, I'd much rather go through an Adcetris treatment than have the flu or a stomach virus. (Though I'd trade my upcoming transplant for either!)

With treatments only happening every 3 weeks I've had plenty of time to rest between each round. I've been trying to balance my eating between indulgence (ex. the mexican fire chips I brought home from Cancun, UDF ice cream, and Cincinnati treats) and healthy choices (ex. broccoli, green tea, fruits) but I suspect indulgence is winning out. Cincinnati is just too delicious.

Home-brewed loose leaf tea isn't bad, but it also isn't Penn Station, Skyline, or Izzy's.

My doctor told me that while I shouldn't drink alcohol for the most part, with this treatment I could have an occasional drink if it was for a celebration or a special occasion. I had one margarita in Cancun and I'm planning on toasting my upcoming 31st birthday with friends.

I'm still not sure if I'll lose my hair with this treatment or not. In the only study that's been done on the drug (sample size = 100 patients) only 13% experienced allopecia (hair loss). With chemos the drug doesn't make your hair fall out immediately, it takes several weeks. Since I've only had 2 treatments, the jury is still out on whether I'll be sporting my hats again soon. I hope to figure it out before too long though. If it's not going to fall out I'm in desperate need of a haircut, but no sense spending that money if it's going to shorten up on its own!

For Valentine's Day this year I'll have my third date with Adcetris. We'll wait a couple of weeks after that treatment (for the medicine to kick some cancer arse) and then get another PET scan (to see if Adcetris and I are working out or if I'm just getting the run around). Depending on the results of that scan I'll either (a) get ready for transplant (b) continue my dates with Adcetris or (c) have to break it off with Adcetris and start seeing a new chemo drug. While Adcetris might not bring me flowers or chocolates, it's also not brought me any nausea or mouth sores, so I'm hoping options a or b work out.

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.

Rediagnosis: Cancer

Last night I was walking around in the Dollar Tree when my cell phone lit up with a call from my doctor. "Oh good" I thought, I'd been waiting to get the official word about my recent biopsy for almost a week. The surgeon had reassured me that the mass didn't look cancerous to him, and so I'd not worried much more about it.

My doc: "So how did the biopsy go?"

Me: "THAT'S WHAT I WAS HOPING YOU WERE CALLING TO TELL ME!"

Doc: "ha ha. No, the actual procedure. How's your incision?"

Me: "It was routine. I'm no more sore than is to be expected. How are my results?"

Doc: "Well, there were Hodgkin's cells in the biopsy."

Me: "You've *got* to be kidding me."

Doc: "I wish I was..."

And so I sat down the cheapie dollar scissors I was toting around. Walked out to my car in a haze. And had a discussion with my oncologist about what happens now.

So what happens now?

First, I move back to northern Kentucky. Second, I start a new treatment regimen, meant to get me ready for transplant. Third, I have another stem cell transplant, this time using a donor's stem cells. Finally, I kick cancer's ass...again (again). Easy Peasie.

I'm sure I'll relate more details as we go, but those are the basics. Here's a terrifying chart, to convey the gravity of the situation:

Overall survival of 118 patients from date of relapse after autologous stem cell transplantation for relapsed or refractory Hodgkin lymphoma.

It's like the giant hour glass the wicked witch of the west flips to let Dorothy know when she'll meet her doom, except less pretty.

There's a new treatment though (only out 2 months) that I'll be doing to prepare for the transplant. Hopefully that changes the statistics as they now stand.

If any of you would like to help me, here's what I need:

Please go to www.bethematch.org and sign up to be a stem cell donor. It's free to join the registry. They send you a cotton swab and some easy directions and once you send it back you could save a life. Very few people ever get called (1 in 540 according to a friend). Those who do get called usually have no costs associated with donating. The procedure itself (as I understand it) is the same one they used to collect my stem cells, which was just like giving blood but took a bit longer. Of the 10,000 people (many of them children) who need a donor every year, only 50% find a match. Please, please sign up to possibly save a life. A life like mine.

In more practical matters, I will need help with the move. Loading in Tallahassee, unloading somewhere in northern Kentucky. If anyone has a lead on nice but affordable places for rent in Burlington, I'd love to know.

If other things come up I'll let everyone know. For now though, hugs, distractions, and support are warmly welcomed.