Sleepy in Seattle

Hi and thanks for reading and praying! My Sol Sister was here for a little over 2 weeks and we had a good time going down to the lake, exploring Capitol Hill, trying out some local eats and hanging out. We have done quite a bit of traveling together and we always laugh alot and get on really well. I'm super thankful for her and that she's able to work remotely (I found a silver lining!) and has been since March. Now Rick is back and my heart is both soaring and peaceful.

I am now 28 days post-transplant and my blood numbers look good! My neutrophils (which are what they look at to measure your ability to fight off infection), are up to 1.14. While this is still outside of the normal range, it's enough for them to relax about things like going to get a haircut, etc.  My platelets are at 93, and while still low, is the highest they've been in over 20 years as far as I know, and my hemoglobin/hematocrit is 9.0/26. They actually do blood transfusions here when a person has a hematocrit of 26, but again, this is quite high for me. 

So, the great news is that the bone marrow is doing it's job creating new blood cells of all types! When my team asked me about a week ago if I was tired, I had to admit that I was. I was wondering why, with so much (relative) hemoglobin, I would be tired and they said they see it all the time at about this stage of the process. My body is working very hard colonizing and growing new bone marrow. I guess the actual amount of stem cells that I got would fit into one die that you roll, and from there it needs to find places to live and grow and repopulate itself and get to work making lots of blood. This definitely explains why I would be so tired, but doesn't make it any easier to feel tired. 

Now this is a tough one, despite the fact that at 1.14 my neutrophils are much higher than they've been typically (see screenshot of my history),

I still have to be careful because apparently my immune system is like that of a newborn baby that has to get used to new things. They've also said that my immune system is still partly my own and partly that of the donor. I think that's great, because I'm pretty impressed with my own immune system for keeping me relatively cold/flu free despite having such low numbers of neutrophils. Eventually, I believe, it will become more of the donor's, but I'm believing they can quantumly entangle and share the best information with each other in the meantime. I honestly don't get the newborn baby analogy with having some resident immune system left, but my protocol wasn't as harsh as many and so I think some of it survived, and perhaps all these explanations aren't always accurate since each protocol is different. I'll get clarification soon.

Something horrible happened to my face! I was using natural, zinc sunscreen (super thick) and you have to wear a mask to get into and out of our building and the whole time while you're at the clinic... and: I have something that they aren't sure quite what it is, but at least they don't think it's graft vs. host (GVH). They have seen other instances of this in transplant patients only since the mask-wearing began in March. So, they said it was familiar, and sent me to the dermatologist who also agreed it wasn't GVH (phew!) but no one knows what it is or quite how to treat it. The dermatologist has a colleague that wrote an article called "Maskne is the New Acne" for the NYT. Some say it's like rosacea, folliculitis, contact dermatitis.... and when it started itching, I just went to lavender oil, and that seems to be helping as much as anything else. 

The continued concern in this phase is that all of the new cells and my previous cells get along swimmingly, enjoying the new terrain and the new backup help. Basically that there be no GVH. Graft vs. Host disease is when either of the two tissues (mine or the donor's) decide the other is a foreign entity and begin to attack it. This can appear in almost any system (digestive, skin, etc.) and can be either acute or chronic. In a way, it's like auto-immune diseases, as there a so many different expressions of it. This is why I continue to pray for and bless my donor and visualize all of my cells working cooperatively and knowing just how to harmonize with each other. Now the focus of my treatment is monitoring and measuring my levels of immunosuppressant drugs to dial those in just right and back off on a good schedule. I don't feel very awesome on them, but they definitely have their part to play in preventing GVH. I think a couple of them were developed right here at the Fred Hutch Research Center (they've got 6 buildings filled with amazing art) and my next doctor, Dr. Effie Petersdorf is an amazing researcher in the field of which HLA genes (identified in the typing phase) are more or less important in the transplant process to have everything go really well. Because I'm not a cancer patient, they don't need to allow ANY GVH to stay around and clean up cancer, so this should go well for me, and I appreciate your prayers! 

Other prayer points:

*good quality sleep and rest

*harmonious cells in my body, new and old.

*that my face would clear up

*a general sense of wellness. I have slight headaches, blood pressure issues, icky feelings after taking cyclosporin and magnesium IV's. Cyclosporin is an immunosuppressant that drains magnesium and causes high blood pressure, which causes headaches when I lay down. 

*Holy Spirit's encouragement and revelation.

If you get any impressions, please pass them on! I got a lot of mileage and freedom from a friend commenting how he'd been led to pray for me, and it was so helpful! 

Through it all, Through it all, my eyes are on You. Through it all, through it all, it is well...

This song (It is Well), Defender, and Fight my Battles have been kind of a soundtrack that I find myself singing during this season along with my own made up songs.  I have sensed Jesus very near and He has been so good, meeting my physical needs as well as helping me navigate tough questions and giving me understanding when I ask questions. 

I'm still enjoying the city and am so thankful that I wasn't here during the rainy season, because I love exploring it on foot and this is perfection! Sunny and 70's almost every day for the next two weeks. :) 

Love to you all!

Sonja