Not my best selfie, but you can see the big filter for the blood (which looks like tomato soup) and my long hair. The bandage secures the needle that accesses my port - SO much easier than a regular IV!
While I'm excited about and very thankful for my "Lynne-parza," I'm also feeling betrayed by my namesake medication because it's been unkind to my blood counts. I find the trajectory interesting: the first month at the full dose, my counts dropped a little. The second month, they took a nosedive. Pretty much the same thing happened after I resumed the medication at 3/4 of the dose.
Last weekend, my fatigue really increased, so I figured my blood counts were low and I asked to have my blood checked a week earlier than planned. That validated my suspicion: I was low enough to need a transfusion again. Our plan was one unit of blood, but they ordered two. Hm. But two will help me recover faster, and this is December, not a month to function at less than full capacity! So I took both units with a thankful heart.
Quick science lesson, if you're interested:
Our blood is sort of like vegetable soup: several "big" cells floating around, a myriad of tiny proteins, nutrients, minerals, and other molecules, and the plasma which, like broth, keeps everything suspended and moving through our blood vessels. The big chunks include white blood cells (to fight infection), platelets (the body's bandaids, key to stopping blood from flowing out of any break in the blood vessel wall), and red blood cells (to bring oxygen to all our cells).
In my case, we're most interested in the RBCs (red blood cells). They are measured by hemoglobin and hematocrit. Hemoglobin is measured in grams (per deciliter), so it's technically more specific than hematocrit, which is the percentage of red blood cells in the total blood volume.
When RBCs are low, the body's demand for oxygen is greater than the reduced RBCs can supply. So it's harder to do basic things. Have you ever had a tough workout, and you have to push yourself to do that last distance or those last repetitions? When my counts are low before my transfusions, that's how I feel just walking across the hospital campus. It's ridiculous, but true: I get halfway and think, "Wow, I could rest right now, but I'm going to push myself because I know I can make it with a little extra effort." Frustrating. Lame. But I haven't collapsed yet!
OK, back to my story:
I have access to the pharmacists at the company that makes Lynparza, so I had a chat with one of them earlier this week. However, he didn't really have answers to my questions. I did learn that big drops in blood counts are a common side effect. And that usually they drop the dose by 1/2 after that (not 3/4 like we did). So perhaps when I start again, my counts will remain stable. But he was surprised I'd had the same drop after reducing the dose.
I also asked about efficacy of the lower doses vs the full dose. It's a fairly new drug (approved only a couple years ago), so they don't have a lot of information yet. Interestingly - and disappointingly - they haven't separated out the survival data for full doses vs lower doses. I had a quick conversation with a different pharmacist there who said they saw good results either way, but that could just be positive reassurance - she didn't specify what "good" meant. And I know I often use terms like "good" at work to give a patient hope even if their situation isn't as good as it could possibly be. Not lying, just not specifying, like, "98% for most people, but 80% for you" - because 80% is still pretty great.
Anyway...
I had asked for prayer for wisdom on what to do about my medical oncologist. Thank you for praying! As often happens, God had a solution that hadn't occurred to me. Before I abandon ship, I'm going to talk to my doctor about what I'd like her to bring to the table, and see what she has to say. I'll do that next Tuesday (12/6).
In the meantime, I had a chance to ask advice from another doc on the team who I really respect and who knows the med oncs really well. In addition to a good recommendation, he had two nuggets for me: 1) my current med onc... well, that's her style, so I may not see a change, 2) an endorsement to have another med onc in the practice on my team, even if I stay with my current doc. His thought: two heads are better than one. So I'll see the other doc on 12/16, and I'm feeling good about the plan.
If you're still with me, here's the non-medical (more interesting) part:
This has been a tough fall for me. While the Lynparza is working (per the CT scan - hooray!), it has also let me down (per the blood counts). I'm thankful I can live a normal life in spite of all my cancer recurrences, but the ups and downs of remission and recurrence and treatment and recovery take an emotional toll.
It's really not that bad, but it's an ever-present shadow. I stay turned toward the light (in my case, that's God and my faith in Him), and that helps tremendously.
But the angst of the election hit me hard, especially after a year of increasing awareness of the brokenness and violence in our world. This has been a hard month at work, too, with more women than usual with cancer, all with more anxiety than most or more difficult cancers than we normally see. And now Christmas, while lovely and beloved for all the right reasons, brings pressure and extra work, too.
Doing my part to spread Christmas cheer with outdoor lights.
While I was receiving someone else's blood today, I did my Advent reading. Today was the first part of Psalm 72 (but I read ahead a couple days so I could take in the whole passage - I didn't want to stop part way through!). Advent is about expectation, looking forward to Christ's coming, both as part of this season and part of His future return and reign. One of the amazing things about the Bible is how this ancient document can be relevant today.
As I lean into the post-election discussions and try to understand other perspectives, and as I live in this world with my problems and others' problems, I feel the weight of it all. And today, my Advent reading reminded me of the hope we have for the future, when Jesus comes again. Here are some of the promises from Psalm 72:
"Let the mountains bring peace to the people... May God vindicate the afflicted of the people and save the needy and crush the oppressor... In His days may the righteous flourish... For He will deliver the needy when he cries for help, the afflicted also, and he who has no helper. He will have compassion on the poor and needy... He will rescue their life from oppression and violence, and their blood will be precious in His sight."
RIGHT NOW the church - Christians - need to be living this out and representing God's promise to end, or at least alleviate, inequity and violence. But someday there will be a definite end - and a just judgment - for all oppressors, and there will be peace. I bolded my favorite words above - I love that the Bible teaches that God will crush the oppressor and that He will rescue the needy with compassion, and that they are precious to Him and their suffering does not go unnoticed. It's easy to have a short-term view and wonder if that's really true, but we have a good, good Father who will set things right in the long run.
Whether or not that's encouraging to you, I'm going to end on a note that I hope makes you chuckle:
This takes me to 98%. Punny and just a little irreverant. I hope these will be on the banquet tables in heaven. Not that the food will need extra seasoning. Product by Lorrie Veasey, Our Name is Mud, Enesco.com
Praying for you Lynne!
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