Over the Hill

 Today is my 40th birthday. I know many people dread this milestone, seeing it as almost an official welcome to being "old." No number of "50 is the new 40" articles seem to help. Forty is over the hill and, for some, the other side of the hill is depressing. And I get that. Forty marks starting up your routine maintenance if you haven't already. Colonoscopies, mammograms, and full body skin checks. Oh my! And I think even the healthiest of us have noticed that our bodies are a little creakier and our memory a little worse. We're getting older, no denying that. The 40th birthday just seems to call attention to it in a way the bums folks out.

But for me? I'm elated! I feel like I reached a stretch goal. 

I was 27 when I was diagnosed with cancer. Back then I spent some time thinking about the phrase "over the hill" and how it's synonymous with 40 but really meant to mean that we've lived half our lifespan. If we each get about 80 years, then halfway there is 40 and that's when we cross over the top of the hill. But looking at a cancer diagnosis at 27, and then rediagnosis after rediagnosis, you start to realize that you probably won't get 80 years.

When was my over the hill moment, I wondered? It was possible back then that I'd been over the hill at 13. Could I really have lived half of my entire life before I'd had my first kiss? Before I could drive? Before I graduated high school? I felt so robbed. People were getting sad about turning 40, but what if I never got to?

My deepest wish for my lifespan was to get to see Brynn graduate high school. I figured anything after that was gravy. Don't get me wrong. I want LOTS of gravy. But I *needed* to make it until Brynn was a legal adult and there wouldn't be a custody struggle and I *wanted* to see her graduate. We fought a lot of tough battles to get there, but I made it. After graduation each new thing has seemed like a gift. Dropping Brynn off at college. Even navigating this pandemic. And now, turning 40.

I did it. I got old. (Though we all know we're way better at life at 40 than we were when we were in our 20s and just doing the fake-it-til-you-make-it routine). Now I want my hair to get greys so I can dye them lilac. I already crochet and have osteoporosis, so I have some of my "old" bases covered. Senior discounts are still firmly out of reach, but maybe that can be my next stretch goal. Until then I'm going to work puzzles, and crochet hats, and watch my programs. 

In the mean time, I want to encourage everyone who's read this far to write out a will. That's right, get yourself something for my birthday. We all hope we'll live a long and relatively healthy life, but the truth of the matter is that some of us are already over the hill... we just don't know it yet. A will is so important (and power of attorney documents are smart too). I think we all have a tendency to think, "Oh yeah, I need to get around to doing that." But this is your sign. Quit procrastinating. You can go formal and get a lawyer. You can DIY it and get books from the library. You can write something out on college ruled notebook paper and take it to your bank to be notarized (for free!). But please PLEASE write out something and let people know where it'll be. Each of us is travelling a different hill, and we need to be prepared if the top of the hill was way sooner than we thought. 

(Sorry to end on sort of a low note, but trust me, it's a gift to your friends and family if you have a will. I love birthdays and gifts, so it all ties together). 

When Acute Hepatitis is Good News

 I'll start at the end, which is where the good news is, then I'll explain how we got here. We've learned that my liver IS the culprit that's caused my stomach to fill with fluid and many of my other issues. But it's not liver cirrhosis (which would have been very bad). It turns out that my Keytruda treatments caused me to develop acute hepatitis. Now people don't normally get excited about hepatitis. We're excited though. It looks like no permanent damage has been done to my liver and we can hopefully get it back to normal. Wanna guess what the treatment is?

More steroids! So I'll once again get all the great steroid perks like increased energy and appetite, alongside all the steroid drawbacks like insomnia, facial swelling, muscle weakness, and calcium depletion. But if we can fix my liver, it should all be worth it. (I'll also be taking diuretics, which help take fluid out of your body and make you pee constantly. Those aren't treating the liver though, they're just to help keep some of the fluid swelling off my stomach). 

So how did we get here?

My last blog post had us doing a portal vein study. Those results actually came back perfectly normal. My condition had continued to deteriorate though. I was so swollen with fluid I looked seven months pregnant!

About to give birth to 2.5 liters of fluid!

I was struggling to breathe when I walked even short distances. Eating was nearly impossible. My weight was stable, but I could tell I was getting malnourished because my fingernails were starting to come in looking very unhealthy. Something had to give.

So my doctor decided to check me into the hospital. My hospital has a special unit for bone marrow transfer patients that's entirely separate from the other hospital units. It was constructed to minimize places dust or germs could accumulate and catered to patients like me in every way. While there we were able to get a paracentesis done, taking 2.5 liters of fluid off my stomach. And that wasn't even all of it! They also tested the fluid, which came back normal. We did a CT of my abdomen, again clearly showing my liver was enlarged. Then we had the main event, a liver biopsy. Once the biopsy was completed we decided I would go home for the weekend. The results wouldn't be back until Tuesday or Wednesday and we couldn't do much of anything in the meantime.

I continued to feel exhausted at home. I was still getting short of breath at the slightest physical effort and eating was still a challenge, even after the paracentesis. On Wednesday I was back at the doctor for results and it was actually really emotional for me. I'd been so worried about cirrhosis, that even the "good" news of hepatitis struck me weird and I cried. After a day to process it though, and a meeting with a gastrointestinal specialist too, I'm feeling much better about everything. I *did* start 60mg of steroids yesterday too though, so that might be some of what has me feeling better.

As far as the acute hepatitis goes, there was a lot I didn't know or understand at first. This isn't a viral hepatitis and doesn't have a letter associated with it (like Hepatitis A or Hepatitis B). It is a drug provoked hepatitis that can, apparently, be treated with steroids and cured. It's also not contagious in anyway, so that's great too. I will be going tomorrow for another paracentesis to take more fluid off my stomach. If we're lucky, this will be the last one though.

Now we just have to give everything time to work!

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. 

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.