I've been on my clinical trial treatment for Alveolar Soft Part Sarcoma for 22 weeks now (about 5 months). I have an appointment in Miami every third Friday to receive my immunotherapy drug (pembrolizumab), and then everyday at home I take a targeted cancer treatment pill (axitinib). John (husband/babe) and I typically fly out of Nashville on Thursday afternoon and back on Friday night, sometimes leaving our spunky 3 year old with grandparents in Tennessee, sometimes taking her along for the ride (she's a big hit in the cancer clinic and sometimes in airplanes).
We extended our last visit to the clinic into the week for a much needed fall break vacation. We flew out the day before Hurricane Matthew hit the east coast of Florida. That's fortunate planning!
At my last scans in August we saw empirical evidence that my tumors are shrinking (slightly, but we thought they would grow in the first 6 months, so any regression at all is significant!), and now we have more evidence from the biopsy to confirm that the drugs are working on a cellular level! There are 5 tumors that I have been able to feel. At this point the one on my scalp is completely gone, I can't feel the one in my neck at all, and the other three are significantly smaller than they were before, even in August! HUGE blessings!!!!
I had to have one spot biopsied because the August scans actually showed that it got bigger while all the other masses were getting smaller. It came back as ASPS, the cancer that I'm already being treated for. When we biopsied it, we thought that I was going to need to have it removed because it was growing and hurting. But since the biopsy it has stopped hurting and doesn't seem to be growing anymore! So to those of you who pray so faithfully for my body and my healing, I want to say THANK YOU for praying even without updates-- you carried me through a season when I thought I would have to have another surgery, praying for strength when I very much needed it.
Side effects have been mostly bearable on this treatment- by that I mean that I'm not regularly sick or nauseous, and I still have energy to go to church and teach my one high school anatomy class. I have had the most trouble by far with fatigue. For me that looks like a decreased energy capacity, brain fog (some from this treatment, some from radiation), and overall blahness. New to the side effect list is low thyroid function from the mean ol axitinib. Apparently it's just tearing up everyone's thyroids. How rude. AND guess what thyroid disruption causes? Yep, fatigue. So in the last 2 months my fatigue has changed from can't-go-to-the-store tired to brain-foggy-and-emotionally-exhausted tired. So the fatigue actually has improved, it just happened to improve at the time when something else came along with its own variety of fatigue. It's still limiting, but I am now able to be more active than I was a couple months ago, which I am incredibly thankful for.
In August we stopped traveling to Miami every week and started traveling once every three weeks, making the clinical trial much more manageable. Yet at the same time, changing our schedule so drastically and then recovering from the exhaustion of weekly travel has been hard. HARD. It's been a different kind of hard for all three of us, and we have each had to learn to cope with each other's coping while also coping with our own coping. You know the drill. That's just how being a family works.
This is one reason that the updates have been infrequent-- because it has been hard. And I feel like any smiling picture makes it look like we're breezing through without any troubles, just happy go lucky. It's so important to have a positive attitude when you are working through hard things, and yet that same positive attitude and gratitude can make it seem like you're happier than you actually are, or like it's easier than it actually is. And sometimes (lots of sometimes) I'm not happy and it's not easy. I'm still thankful to be where I am, and I still have hope and faith in God's redemption work, but I'm not always happy and it's not always easy. And that's true for all of us.
Now the hardness is getting easier. We've spent lots of time adapting to our new pattern of living, and we all seem to be finding a good pace at which our lives can run. It includes lots of breaks and rests, and we've largely learned to make that work for us. When your cancer is shrinking, almost any pace that life will allow is a pace that you accept with open arms, not always happy about it, but always accepting.
And my hair is growing back!
In May it fell out after brain radiation (what?!? I can hardly believe I had brain radiation!), and it's finally starting to cover my head again. The back wasn't affected by the radiation, and the front was the most affected by the radiation, so I am currently rocking a very classy mullet. I've become quite fond of my head scarves, so I plan to keep wearing them through the fall and winter. Maybe intersperse some headbands in there if I'm feeling wild. Who knows!
I really love writing in this blog, so I am going to make an effort to keep the updates more regular. But don't hold me to that if it doesn't pan out!
If you want specifics to pray for- my thyroid, fatigue, and fogginess could use some real work. And I'm praying that even when it is hard I can have ears to hear where God is calling me, because I know he still uses us when we're exhausted and tired, but it's easy to forget that when you're exhausted and tired.
Thank you for joining our journey!
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