Updates and Backslides

 A lot has happened since my last post, so I'm going to do my best to sum things up instead of draw them out.

My port was placed in my chest (not my leg) without incident. It's been working great and seems to bother me slightly less than my previous ports.

We started the immunotherapy and it seemed like it was working unbelievably well. I didn't have many side effects at first. I developed a spotty, itchy rash on my legs, but it was manageable. Historically, my SED rate (which is a measure of inflammation) has been a good indicator of how bad my cancer is, with a higher SED rate equaling worse cancer news. After one immunotherapy treatment my SED went from being in the 90s to 17! 

We were shocked by just how well everything seemed to be going. My cough subsided and I had an energy boost. Things I just couldn't manage before were possible again. I carried laundry up the stairs. I was doing multiple activities each day. I felt so much better.

But slowly things started to get worse again. My cough gradually came back. My heart started racing again at the tiniest activity. I began to feel exhausted after doing nothing at all. My SED rate has continued to go down, clocking in at 11 the last time we measured it. But I have been feeling worse and worse.

On Friday (10/16) I was supposed to have a treatment, but Dr. Essell decided my side effect symptoms were serious enough to hold off on the treatment. I had a PET scan last week and got the results today. The scan reports "satisfactory treatment response." There are still some places lighting up in my lungs, but that *could* be due to something else going on. there's definitely some pleural thickening, which is bad and a few other keywords that don't sound great. So it was a good scan, but not a great scan. But I'll take good. At least the immunotherapy worked somewhat.

But now I'm having a host of other issues. I had an EKG today before my appointment with Dr. Essell. He again decided to hold off on doing another treatment today until we can get some more information about what's going on with my side effects. (Or, if not side effects, other issues). After seeing him I went for an echocardiogram, so lots of heart stuff today.

I've also been bleeding and bruising very easily. Today my CBC (basic blood test) showed that my platelets (the things that make your blood clot) are only 19. Normal range is 182-369. Nineteen is way too low. So we have to figure that out too. 

Finally, as if all this wasn't enough, my dry mouth has gotten far, far worse. I used to have dry mouth to the point that it irritated my gums and made it tough to swallow some pills. I have an oral prescription that helps some, but the dry mouth wasn't previously a major hurdle. Now I can't swallow food, which is a much bigger problem. We've gotten some over the counter products that help with the dry mouth when I'm not eating. But with food? We've had to do some creative shopping that has me eating soft/soupy foods like cottage cheese, mashed potatoes, and soup. Also, pudding and applesauce. I'm losing weight though, and no one is happy about that.

Overall though I'm just exhausted and frustrated. I can't hardly do anything around the house, leaving poor Alan to work 40 hour weeks AND to then have to take care of me AND the house. I can sit around and crochet, but I don't even always feel up to doing that. I just want to have a little bit of energy!

We are still continuing to isolate. We haven't eaten out or gotten take out since the end of February. I'm able to work my 12 hours per week from home, which is such a life saver. Alan still has to go to work and I still have to go to the doctor, but we take all possible precautions when we have to be out. We've been having our groceries delivered for months now. I do miss going out places and (especially) thrift shopping, but I'd rather be safe. I hope you'll all continue to stay as safe as possible too!

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!

A Bronchoscopy and a Very Long Nap

Yesterday I went for my bronchoscopy and everything went smoothly. There are risks like the possibility of deflating a lung or a chance of severe bleeding. I'd stopped taking my blood thinner medication a couple days prior though, and we had no complications.

In the past when I've gone for a bronch, I've been allowed to have a person with me in pre-op, but that wasn't the case this time. I was happy to see COVID precautions being taken though. Things kicked off with my nurse insisting I give a urine sample for a pregnancy test, despite the fact that I have been tested and have been post-menopausal since my first stem cell transplant. That did not sway her and I got tested anyway. Imagine my passive aggressiveness when she reported the test was negative. ("Of course it was." -me)

Only the finest in hospital fashion

Then we really got underway. I had to have an IV for anesthesia, so they got one started and hooked me up to fluids. I did have a vein blow in the process and am currently developing a multicolored bruise on my wrist, but I'm a hard stick so no hard feelings about that. I needed to use a nebulizer to help numb my throat and lungs, which took 20 or so minutes to complete.

There's no cute way to use a nebulizer

Then it was time to head to the OR. I've done this multiple times now and seeing the operating room wasn't anything new. I moved over to the operating table and the team finished setting up. Once they were ready it was time for the anesthesia. I got two different drugs pushed twice, then they gave me IV Benadryl. If you've never had Benadryl pushed into your blood stream, it is a bizarre experience. You are, almost immediately, unable to stay awake. And I don't remember anything else until I woke up in recovery.

My doctor spoke to Alan about the procedure (per my request because I'm useless after anesthesia). The doctor said he didn't see any lesions like he had seen during my last bronchoscopy, but that he did biopsy from several areas. He also did the lavage, where they spray fluid into my lung and take it back out to be tested. Some of the tests can take weeks for results to come back. We don't know any results yet at all.

Afterwards Alan drove me home and I stumbled straight up to bed. I slept all and and most of the night, getting up around 10:30p to feed myself but going back to bed around 2:30a. I slept all night and didn't fully wake up until around noon today. That anesthesia and Benadryl really knocked me out! I still have a bit of a rattle when I breathe sometimes, which makes me cough, bu that should wear off in a day or two and I'll be fully back to normal. Overall a pretty painless procedure!

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.

The Chemo is Working!

You guys, I feel like we really needed a win. I needed a win. The chemo side effects are rotten. I've felt super drained. And COVID-19 has my immunosuppressed-self worried.

So the scan results we just received were exactly the encouragement and good news I needed. Every bit of cancer shrank! And it all shrank a lot. The largest place in the middle lobe of my lung went from an SUV of 11.4 on the last scan to an SUV of 2.7 on this scan.

SUV is an abbreviation for standardized uptake value. The way a PET scan works is that I fast for 6 hours before the test. Water is okay, but nothing else to eat or drink. When I get to the hospital, they administer an injection of radioactive sugar. It even arrives in a lead sheath to protect the person giving the shot. Because cancer cells multiply rapidly, they suck up the radioactive sugar much MUCH more than normal cells. I sit for about an hour while my cancer cells gobble up all the radioactive sugar, then I go through the PET/CT machines for another 20 minutes or so. The PET machine measures the radiation from the sugar. The higher the SUV, the bigger or more intense the cancer is in that area.

So to drop from 11.4 to 2.7 is a huge victory! There's still disease, but it is DEFINITELY responding to this chemo. There are still several places in my lungs that are registering as cancerous, but they all have SUVs that are reduced by at least half compared to my prior scan. I have NO cancerous activity in my lymph nodes right now, and at least one other place in my abdomen has disappeared as well. And my bones also look clear.

This is SUCH. GOOD. NEWS.

We're not out of the woods yet though. The places in my lungs have already developed a resistance to the first treatment we tried, and they could develop a resistance to this one as well. But for the time being, we're celebrating the improvement, even if it's not a resolution.

I went through my third round of this treatment this past Tuesday and Wednesday.

My $5,000 out-of-pocket, 30 minute chemo.

I've continued to react to the treatments with itchiness that seems to kick in when the first Benadryl (that they gave me before treatment) wears off. But I just take another Benadryl and zonk back out until the itchiness is gone. I think it's getting a little worse each time, but as long as the Benadryl takes care of it, I should be okay.

My other symptoms are frustrating, but manageable. My neuropathy keeps creeping further up my arms and has started in my feet now too. It's made opening bottles impossible but I'm still able to crochet, so it's working out.

Crocheting Alan's blanket while Ella naps.

I am feeling very tired after this third round. Not the same kind of completely drained I felt after the first round of treatment, but more like you feel after you spent a long day doing something physical. I feel like I spent yesterday moving furniture and painting a whole house, though really I just sat around in my pajamas. I've been listening to audiobooks though, which has been a treat.

So thank you to everyone who has been cheering me on! Dr. Essell says we may do up to six total of these treatments, depending on how my body is tolerating them and if the cancer keeps responding. So I'll still be feeling pretty rotten from the chemo for awhile, but it's totally worth it knowing that the chemo is doing it's job and kicking this cancer's ass!

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!

Ways to Help (if you're so inclined) and a Quick Update

So a lot of folks are reaching out and asking what they can do to help out while I'm sick (and if I get sicker). Two friends (Katie and Sara) have been spearheading and organizing this outpouring of love. Many of you know I'm not super comfortable asking for help and have largely avoided it in the past. But Katie and Sara insisted (rightly) that if I could use a hand, I ought to be willing to say in what ways. So here goes...

But please, if you're in a tight budget situation, or don't have a lot of free time, or have helped me out in the past, or just can't or don't want to help right now... whatever the reason, I don't want anyone to feel like they have to help. We're really okay. These are just tips for anyone who feels compelled to help out!

Gift cards for food are great for nights I don't feel like cooking now (which is like 6 out of 7 nights, sometimes all 7). Katie and Sara have a list of restaurants we like and Grubhub gift cards work too. I have some dietary restrictions with this chemo, so we're not doing a meal train while I'm on it.

Cards in the mail are a nice pick me up. Both Katie and Sara have my home address if you don't have it. Please wait to send cards until everyone in your personal circle is healthy though. I have to be extra careful about germs. If you'd like to send Brynn a card, contact Katie or myself. We're a little stingier with her address, but if you really know her and aren't a stalker, we'll share it with you.

Katie and Sara are collecting money to send a house keeper to my house every other week to clean our two bathrooms and kitchen. I know several folks have offered to come by and clean. For the time being, we're trying to limit my exposure to too many people. With my lowered immunity, we think one person coming consistently would be better than a schedule where lots of people come when they're able.

I was also asked to put together an Amazon wish list for both practical items (like Lysol wipes) and "treat" items that would just be nice to have. It's short right now, but will grow as I need/think of things. You can see what's on the list here.

One of my biggest concerns since I was first diagnosed, has been Brynn's college fund. My friend Jason and his parents graciously set up and have contributed to a fund on Brynn's behalf. If you would like to make a one time donation or set up a recurring donation, it would be eternally appreciated. Katie has info for contributing to that (or for contributing to Brynn's college savings account rather than the 529 plan).

Brynn will also want to come home for visits depending on my health. She estimates it's approximately $30-35 for gas round trip. So gas cards for her would also be put to good use.

Flowers are about to be a no-go starting in just a few days. If you already sent flowers, they're lovely! But after my first two-day treatment, my white blood count is about to tank and once that happens I shouldn't have live flowers around.

Treatment update:
I've completed my first round of my new treatment. The drug I've been getting in the past that we're continuing with is Adcetris. The new two-day chemo we're adding is named Bendeka or Bendamustine. The Bendeka is true chemotherapy and so I have additional pre-meds before we run the chemo. On day one I get two anti-nausea drugs (one oral, one IV), an IV steroid, and an oral Benadryl. On day two I get the IV steroid again. The IV anti-nausea drug from day one is long-lasting and so I don't repeat that on day two.

After treatment finished on day one, the oral Benadryl hit me hard and I zonked out on the car ride home. I slept for about 3 hours after we got home. Benadryl absolutely puts me to sleep every time. That was lucky though, because the steroids are keeping me from sleeping for very long at night. I've only slept for around 4 hours at a time for the last two nights since beginning the steroids. Thankfully the steroids have given me a small energy boost. Brynn and I were able to run a couple errands together last night, which was nice.

This fancy device will help my white blood count recover. I only have to wear it for a little over a day.

I will need a Neulasta injection after each two-day treatment. It will help to raise my white blood cell counts before it's time for my next two-day treatment (in three weeks). The Neulasta comes in a smallish packet that attaches to my belly and automatically delivers the dose of the drug 27 hours after it's applied. Neat technology!

It's still too early to tell about other side effects. I'm not hugging the toilet or unable to get out of bed today though, so that's a small win!

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.