May 25, 2017 (Sara)
I ran into a friend at the grocery store last night. This friend happens to be a psychologist…she asked me if writing these updates were as cathartic to write as they were for some of you to read. I have been asked this question in the past and for the entire first year of this adventure, I would have said yes, absolutely. Especially those first months. It was necessary for me to write and let it all out. It helped me to keep things in perspective, to find the positive side of all of this; it helped me to heal. Writing for YOU made it easier for ME to cope. Last night, in the grocery store, I answered the question “it is as cathartic…?” and I don’t know if its the magic of a psychologist or what but…I answered with the truth…it WAS cathartic. Very releasing. But now? I’m honestly just tired. I’m not tired of writing. I’m certainly not tired of disseminating information to those who are interested in Maya and our family. Keeping you informed is an important part of writing a public journal. After all, you keep us going. I am doubtlessly tired of feeling so intense. So intense. All of the time. The emotions I have felt over the last 16 months are enough. I’m good. I’ve had enough drama. I don’t want to have to talk about it. I don’t want to have to write about it. I don’t want to re-read some of this. I’m really not quite sure how I survived my teen age years since I was certain that I was living the most dramatic time of anyone’s life….who ever existed. Who would have thought it could get worse. Or better? Or maybe I just got better at accepting challenges….oh I don’t know.
Finding words that make sense and that offer some sort of insight into our lives have been difficult for me lately. Truly, at my core, I am happy but systemically I’m weary. And I’m tired. And that makes me feel weak. I know this does not make me weak but I would rather write about strengths and growth rather than trials and tribulations. I don’t like to complain because I know each person has their own battles. Who am I to think mine is any more daunting? My complaining does not do much for anyone and when I write about struggles…I feel like I’m complaining. Maybe you don’t read it the same way. But when I write, sometimes it feels broken.
For many years growing up, I wrote in my journal. I remember one of my first entries was as I turned 10. “today is my last day of being 9”. We were at Apple Hill and I think my Grandparents gave me that journal that day. I still have it. Actually, I still have all those that followed too. For many years I wrote about things that happened. And mostly I wrote about things that bothered me. I never wanted any one to read it. It contained my secrets. I’m not sure why I didn’t want anyone to read it. I don’t think it held much of anything other than the things I was sad about. After years of life, I have come to realize I mostly didn’t want people to know I was sad….like it was a character flaw. I found that I always wrote about dramatic issues too. Then one day a boyfriend broke into my Studio City apartment and read my journal. (Yeah, Dad…I know, he was crazy.) Well he read my journal and I was upset. So I stopped writing….as if it was the journal’s fault. After an adolescence and young adulthood of writing, I just stopped. I felt more violated that day than any day my car was broken into.
Then one day I got pregnant with Maya. And I decided I would start to write again only I would write about the great things in my life. For my children. I enjoy writing about the good things. And even now, I really just want to write about the good things all the time. My journal writing has not been as consistent as it once was….I blame the children. But I focused on writing good things.
Then Maya got diagnosed with Leukemia. And honestly, life has been great but circumstances are not. So writing in the journal is more demanding. I have to dig deeper and challenge myself to find the optimism and the beauty in life. On the surface, it is easy to see. If only my mind would stay on the surface.
Maya’s hemoglobin came back pretty low on Monday (7.1, transfusion is needed at 7) and an ANC of 70 (virtually no immunity). I have to constantly work on forgiving myself for not anticipating these low numbers. As a mother, I must have seen changes drastic enough to need a blood transfusion…but truth is I didn’t see it. I guessed we were in the 8’s or high 7’s but I was blinded with hope that she wasn’t that low. We held off 6MP (the oral chemo) for a short 2 day stint but chemo holds make us all nervous even when it is because she is neutropenic. Two days off and DrZ put us back on a 50% dose of 6MP. This is a 50% dose of what a typical ALL kid her height and weight would take.
Today we went into check labs. We mostly checked because we resumed oral chemo and she was one 10th of a point away from needing a blood transfusion. And because she apparently flies high above any signs/symptoms blatant enough for us to be concerned.
Some of today’s labs were okay. Platelets 124. This is increased slightly from Monday and basically gives the indication her bone marrow is working. ANC 120. Still virtually zero but Scott’s optimism reports this is almost double in two days. Ugh. Hemoglobin 6.8 So…Maya got some packed red blood cells for lunch along with her mac’n’cheese and carrots compliments of Renown Children’s Hospital and Nevada tax payers. #Thankyou.
Getting blood leads to a very long day. DrZ wanted us to come in and get checked today then come back tomorrow if we needed blood but since we were there and Lincoln was taken care of, we went ahead and waited for the blood today. This is her second transfusion in 6 weeks. She has not shown any signs of “reaction” which would most likely occur during the transfusion but we still will monitor her for any rash, fever, pain, etc. Transfusion took about 4 hours once it was running and we were home by 4pm.
Maya is good. While I wasn’t able to see that she was so low…and she NEVER complains…it was amazing to see the pink flow back into her cheeks like the Wailua into the sea with each minute of the transfusion. Incredible. And inspiring. We are so amazingly grateful for donors. I wish I could write a thank you and send a bracelet to the person who’s blood we used today.
Lincoln is great. He’s growing so fast and such a little viking. My heart breaks for him to miss school again. I hate and that his experiences are at the liberty of cancer but…well he doesn’t really know what he is missing yet. I can’t tell if that is a good thing or a bad thing.
I’m good. I am frantically trying to find that work/life/cancer balance. Some weeks are better than others but my support system is as strong as a redwood. I’m missing movement and working out but I know it will return shortly. Also, after my Grocery Store Therapy Session (which should totally be “a thing”) with my psychologist friend – I’m thinking maybe a psychologist with expertise in trauma isn’t just something we should look into for Maya. I will probably need to make time for more of those therapy sessions too…one day.
Pelei….oh shit did I feed you?….Okay now she’s good. Best dog in the world.
Scott…amazing. I’m really not sure how he does what he does but Scott is some sort of Super Man. He takes care of this family like its his job. He takes care of me like its his job. AND he is now the VICE PRESIDENT of Western Nevada College….his actual job. Thank you for some how figuring out how to do it all. And look amazing while doing it (check out this picture of Scott and Gov. Sandoval!).
Okay. The next step is to check in next week sometime. We’ll check labs and see where we are. We anticipate she holds on to those donor red blood cells….at least we hope she does. We have resumed chemo but hopefully this transfusion gives us enough time to see if the 1/2 tab each day of 6MP is the right dose. If in a couple weeks she isn’t recovering enough to keep her ANC above 500…then we’ll decrease but we all agree that we don’t want to make too many changes. Patience is a virtue right? We can be patient. With enough wine….
Love is life.