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.