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. 

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

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

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

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

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

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

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

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

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

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

Ugh. Ugh forever.

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

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

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

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

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

But the bad guy wasn't dead after all.

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.

Day 100, or Look Ma, No Tails!

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

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

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

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

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

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

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

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

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

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

What's that "special glow"? Radiation!

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

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

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.

So Someone You Know has Been Diagnosed with Cancer...Now What?

When I was diagnosed with cancer I went through a period of shock, disbelief, and denial...all unwitting strategies for staving off the uncertainty and terror that comes with such a diagnosis. Thankfully I have an amazing group of friends and family who supported me through that difficult time. But as days and weeks of remission turn into months and years, I'm increasingly aware of how many others are dealing with cancer diagnoses. That alone-ness I felt when I discovered I had cancer was a lie. It seems like about once a month someone new comes to me to relate a story of their friend or family member who has just found out they have cancer. It's devastating. I hate knowing that someone else is going through that experience, preparing for that battle. But everyone wants to know what they can do. I don't have the perfect answers, but I have a few suggestions. Many are things that someone did for me when I was sick.

The first thing to do is simply to ask if the person has anything they need or if there's something you can do to help. Don't push for an answer though. When I was sick I was terrible at this. Frequently I didn't know what I needed. If I did know, I was often too hesitant to actually ask. Your friend or family member might not want to admit that they can't do certain things, but I think it's always better to ask outright first. If they can't think of anything, but you know of something they are going to need help with (such as scooping a cat's litter box, which they're not supposed to do) maybe you can directly offer to do that thing.

Apart from asking directly, here are a few additional ideas for how to boost the spirits of, or lend a hand to, a person who has just found out they have cancer. (in no particular order)

1. Buy them cancer schwag. There's a colored ribbon for almost every variety of cancer. You could buy a car magnet, a keychain, or a t-shirt with their ribbon on it. For the most part these things seem kitchy, but at some level they reminded me that there were other people out there who were in the same boat I was in. I wasn't the first to have this kind of cancer and I wasn't the only one fighting it. One shirt I especially liked said "I fight like a girl!" and had a purple (blood cancer) ribbon on it.

2. Tell them stories of people you know who have beat cancer. When I was diagnosed I didn't know other people who had cancer. The only other person I'd known to have a blood cancer was my papaw, and he passed away shortly after his diagnosis. If you know success stories, share them! Whether it is simply that chemo wasn't as bad as someone anticipated, or it's a story about full on remission, these sorts of stories provide encouragement at a very discouraged moment. DO NOT relate stories about others you know who have lost their fight with cancer. It's good to be realistic (chemo sucks, radiation can be irritating) but someone who has just been diagnosed with cancer is keenly aware that it is a disease that kills people. That's not where you want to focus.

3. Send cards regularly. I loved getting cards with words of encouragement and support. I taped them all over my bedroom and, later, all over my hospital room. It's a simple gesture, but the outpouring of support meant a lot. I think it's especially nice when you can send a card every couple of months. Friends and family sometimes forget that the battle is a long process and support dwindles. Getting cards in those lulls is especially nice.

This was my home for over 3 weeks. See the cards on my bulletin board on the left?

  4. Send support. Many cities have services where one can order a warm, home-cooked meal to be delivered to one's house. These are nice on nights when your friend or family member is too tired or sick to prepare a meal. You can usually purchase any dollar amount worth of meals (sort of like a gift card) and your friend/family member can use them at their convenience.

Several friends gave me books, magazines, and even a kindle for leisure reading on long days while I was at doctor's appointments and getting treatment. Whatever your friend or family member enjoys (or maybe has always wanted to do) that can be accomplished sitting in a chair would be great. Buy an electronic fishing game, scrapbooking supplies, maybe even a rubik's cube. I crocheted a queen size blanket (entirely with a sc stitch for any fellow crocheters out there). Anything to provide a diversion during hours of chemo, blood transfusions, hospital stays, etc.

I was also very fortunate in receiving the gift of a cleaning service. Someone came to clean my house every other week. It was amazing, since it was important for me to be in a clean environment, but I was always too tired to do much cleaning. You could always pay for just one detailed cleaning, to get the house super clean before treatment. Alternately, if you have the time and live close-by you could offer to go out and do the cleaning yourself.

DO NOT send flowers if your friend or family member has already started chemotherapy. They may not even be aware of it, but once their blood counts (and immunities) are lowered, they're not supposed to be around fresh flowers. The hospital had to take my flowers away after my counts dropped. Luckily I was able to enjoy them for several days before that happened. One friend was clever and sent a bouquet of balloons instead. By special request they were all tied to a diet pepsi (which was especially exciting, since the hospital didn't stock caffeinated beverages).

5. Donate to the cause. From the American Cancer Society to smaller, more specific groups like fight2win.org, there are a wide array of organizations dedicated to researching and fighting different cancers. You could make a donation on your friend or family member's behalf. Again, this is the sort of "help" that isn't direct, but provides a morale boost. It always buoyed my spirits to think about the cutting edge research that is increasing survival rates every year. I was also touched to see the physical work several friends dedicated to Team in Training, which supports the Leukemia and Lymphoma Society

6. Buy a photography session. If your friend or family member is going to have to have chemo (and lose their hair) it might be nice to purchase a photography session for them and their closest friends or family. A friend arranged to have photos taken of Brynn and I before I started treatment, and I treasure them so much now. They're some of my favorite photos ever.

My post-diagnosis, pre-hair loss photo shoot

7. Help them find help. Discovering you have cancer is overwhelming enough, but there's so much more to deal with. In the months after my diagnosis I had to apply for several financial assistance programs. One was non-negotiable, as it was the only way I could afford to take one of my required medications. Another required receipted expenses be sent for reimbursement. Yet another would only accept applications on the first business day of the month. I was also unaware of several programs that would have been beneficial to me (such as a local blood cancer support group, the American Cancer Society's "Look Good, Feel Better" program, and their gift closet). There's help out there, help your friend or family member find it.

8. Offer them a ride, or a grocery run, or cook a meal one night. Ideally your friend or family member would be able to express what it is they need and when they need it. For me, however, that was almost impossible. There were days when I woke up, prepared Brynn for school, and got her on the bus,only to come back home and sleep until it was time to pick her up at the bus stop in the late afternoon. Even on those days I wasn't able to admit to my friends that I needed help. I was more likely to accept help when it was a specific offer made by someone else. I couldn't request help, and I was reluctant to accept it, but at some point an offer like "Why don't I make dinner for you and Brynn and bring it by on Thursday night?" was one I couldn't refuse.

9. Finally, remember that this is still the same person you've always known. After I was diagnosed I found that people began to discount their own problems or avoid talking to me about them at all. It was certainly done out of concern for me and respect for the rough time I was experiencing, but it made me feel a little out of place. In fact, sometimes hearing about what was going on in someone else's life (the good and the bad) was just the thing I needed to pull myself out of a funk. Everyone will be different in this regard, but don't take "special treatment" too far. At some point I said I didn't want to be "the girl with cancer" anymore, I just wanted to be plain old Shawntel. Don't let the cancer change your image of your friend or family member too much. 

All in all, there's no sure fire approach to dealing with a cancer diagnosis. Even the person who is dealing with the news is often unsure of how they want loved ones to react. Still, I think most people who are diagnosed with cancer understand that their friends and family don't always know the best way to offer their support. I appreciated everyone's efforts to encourage me and support me in gestures both big and small. Show your support in the best way you know how, just be sure to show it.

The Unambiguous News

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

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


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

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

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