Wheel of Fortune

I’m not sure if we are Pat and Vanna kind of running the unpredictable show, or are we the contestants hoping for a fortuitous stop on the wheel? 🤔 Obviously we thought we were Pat and Vanna, but we are sooooo clearly the pitiful contestants!! 🙄 We just keep spinning the wheel - round and round she goes....where she stops, no one knows.

The last 5 weeks have been traumatizing! I don’t even know how to describe the emotional ups and downs. So I won’t. You’re welcome. 👍🏼 We had another bone marrow biopsy on Friday 28th. We intentionally decided against telling anyone to avoid the barrage of well-meaning texts and calls for results. Given our fragility of hope on round 3, we wanted to avoid an immediate response when asked. But as it turns out, 3rd times the charm. We finally saw significant results. 💃🏼🕺🏻 our doctor had them run the test 3x to verify. Clearly he was as shocked as we were. So this is really great news! Celebrate it! Enjoy this moment of reading about what we’ve all been waiting to hear. Be thankful for the first win C has finally had!

Wanted to make sure you felt like your prayers and positive thoughts are worth their weight, because they absolutely are! But, this news isn’t quite as wonderful as it might seem. We are very late in the game for a remission. Had this come in the beginning, our enthusiasm would be uncontainable. While we currently have a tiny (1.4%) amount of blasts (leukemia cells), we do still have Craig’s predisposing disease front and center (this was mentioned in the ’Plot Twist’ segment of our series 📘😜). So his AML is being held at bay, but his MDS isn’t. Like we’ve always said, he has a very layered and complex disease. The only potential cure for either is a bone marrow transplant. At present, we are not sure if a transplant is still an option. And if it is, it comes with serious challenges given the road we’ve traveled thus far. But you know what, at least we have some window of opportunity to try like hell to get where we need to go. So after quite a bit of soul searching, tapping the depths of his emotional well, mentally gearing up for another fight with less stamina and physical resources, C is digging in his heels and starting another round of chemo within the next week or two. The small amount of blasts I mentioned are referred to as minimal residual disease (MRD). Those need addressing - AML is very aggressive and can return quickly. There is still much to be monitored, discussed, and decided over the next several weeks. There will be some decisions at the end of our next round of chemo. We are now below 140 lbs. He is doing an awesome job of eating (limited diet) over the last reinvigorated week, but we cannot seem to hold, let alone gain. It’s incredibly frustrating. He ate 3700+ calories and 117 grams of protein today. We are trying to get a handle on whatever the heck is going on with this. But to start another round of chemo like this, is clearly worrisome to both of us. We are meeting with our doctor tomorrow evening to try to push as much as we can on some timing issues. We are keenly informed of his reason/argument, we respect his opinion immensely, but we also don’t want to push to a point of no return. We will see where we land.

Here is what we do know. We know if we give into fear it will overwhelm and deter us. We know we have to focus on one day at a time. We know we have to take calm and mindful moments to breathe and reduce stress. We know we need to tackle each challenge as it comes and not allow the overall picture to intimidate us. We need to remember who we were in November and December before things started going off the rails. We need to BE those people again and refuel our determination. We need to forget about the mountain that lay in front of us, and celebrate the hill we just crossed over. And I think we are almost there. And we seriously need to say “Fuck Off” to cancer and this beat down of a path it has taken us on. Soooooo......if you’re inclined, and not too offended, join us in saying/yelling/screaming “Fuck Off”!!! 🖕🏼

Our doctor would like for us to attempt another 2-4 day stay at home. The goal is this Friday. They are working on a logistical plan to make it less stressful than the last attempt. Fewer visits to the hospital, etc. 🤞🏼🤞🏼

It is probably abundantly clear at this point that my spiritual space isn’t as traditional as some of yours. To me, it would seem inauthentic to start praying in a more traditional way strictly out of need, rather than a deeper connection. But I genuinely respect, and sometimes envy, the unwavering faith that many of you have. It has been brought to my attention that prayers with specific requests can have several advantages. I was curious and this is what I found:

1)  Praying for specific needs clarifies our minds

2)  Praying for specific needs helps us define our needs

3)  Praying for specific needs emphasizes our dependence on and intimacy with God

4)  Praying for specific needs makes us more alert to answers

5)  Praying for specific needs increases our faith

This certainly resonates. The logic in asking for help with something specific. For those of you that pray in this way, here are some helpful requests:

* weight gain

* improved mobility

* eliminate oxygen dependency

* wisdom to collectively make the best choices with treatment/timing going forward

* physical strength to keep fighting

* emotional well being to stay positive and believe in possibilities

This would be a good list for our current focus. ❤️

There are some sweet stories I’d like to tell, but this whole entry already disappeared on me once. Right about at this point. The end of the update. 😠 So I’m going to push the second part of this till another time. I’ll just leave it with our gratitude to have gotten a moments reprieve to breathe and find our way to the next phase. I know there is a way to cobble out a path to beat this. It might be a dusty old path without a lot of travelers, but where there IS a will, there IS a way.

Hope this finds you all well,

C & A