If you’ve ever wondered why I blog, there are a couple of reasons. The first is obviously that it is really boring to explain what’s up a million times. The second and more important reason is that ownership of my voice throughout this process is incredibly important to me.
There have been times where I have wondered if maybe this was the wrong choice – if blogging about my illness is reducing me to my illness in the eyes of many people, especially those of you that I barely know or don’t know at all. I wouldn’t blame you for that – this blog is primarily about my illness.
I guess I am just reminding you that this blog is also about me. I’m dealing with something really awful but really I am still here. I’m 19, turning 20 in two days. I grew up in a suburb of Sacramento called Folsom and I played soccer and piano and Halloween was my favorite holiday. In high school I moved to Moraga and it was the worst three years of my life. I spent a summer doing research about MRSA in Thailand when I was 16. Near the end of high school I spent a year working on a research project about combined kidney and stem cell transplantation (I recognize that it is super eerie that I went on to have a stem cell transplant). The Stanford WCC and SHPRC have been important homes to me over the past two years. I had my heart broken for the first time when I was fifteen, got my license on my sixteenth birthday, and one of my front teeth is half fake due to an unfortunate soccer incident. I may be guilty of sometimes wearing tights and birkenstocks.
I don’t really do anything halfway. I am a perfectionist and I throw too much of myself into everything I do. I wouldn’t have it any other way. I started Stanford pre-med/humbio and hilariously switched my major to engineering when I got sick and I didn’t know why my life was spiralling out of control because I thought it would be easier. I once lost my credit card on the floor of a parking garage in Ashland, OR and found it 6 hours later. I studied abroad in South Africa with an aggressive amount of leukemia and still managed to bungee jump and go shark cage diving. My favorite foods are sushi and red jello. I am telling you this because I want you to listen to me. Not my illness. Cancer has taken a lot from me – trust, fertility, hair, my school and community – and at times it feels like it has also taken my identity. I’m still here guys.
So now that I have lectured you about this, let’s talk about my illness! I have been home for about two weeks. Being immunocompromised is STRESSFUL. I can’t see the bacteria but they are all around me and all I can do is wear a mask every time I leave my house and wash my hands a million times a day and stick to the bone marrow transplant diet and take all my meds and hope that I don’t catch something that will kill me. The longer I am home, the more I have settled into realizing what I can and cannot control and accepting that.
I had a bone marrow aspirate done on day +30 and I am still in full remission. My brother’s cells make up 98% of my blood products, which is essentially as good as it gets. I am beginning to be weaned from immunosuppressants and hope to be off of them in about three weeks.
I still have a long road ahead of me. The immune system takes about 6-9 months to rebound and I have to follow all BMT precautions for this time. Additionally, my doctors have decided to do another four rounds of chemo in order to keep me in remission. Luckily, this chemo is outpatient and ‘nice’ chemo that won’t take me out as much as these past three rounds have. I am kind of sad because this means I have to keep my central line for about 6 more months and I will continue to be bald. But at this point I have learned that very little of my life is within my control and I just have to enjoy the good parts of it – and there are a lot of good parts.
I have a couple of PSA type things for the end of this post:
1) Some of my wonderful friends have organized a bone marrow drive and fundraiser (for my favorite human ever Abri) at Stanford in honor of my 20th birthday. It will be Nov. 10 from 11 – 3 in White Plaza. To those of you who are not in the area – I would be honored if you would consider registering for the bone marrow registry at bethematch.org. If you need an incentive, here is a pic stitch of selfies Abri took:
Facebook event here: https://www.facebook.com/events/1709353429298157/
2) This doesn’t really apply to most of you, but I have read a lot of cancer blogs and I really appreciate when people include their meds and info. Feel free to ignore this.
– Diagnosed 06/18/2015 at 69% blasts in marrow; 89% peripheral blood; white count 129,000. Subtype Philadelphia positive (9;22); considered ‘very high risk.’
– Inducted with typical AML stuff, I don’t remember what. High-dose ARC and some other stuff.
– BMA came back 20% blasts, considered induction failure
– Salvage regimen of cladribine + high dose ARC, mitoxantrone, and GCSF. See article titled “Cladribine combined with high doses of arabinoside cytosine, mitoxantrone, and G-CSF (CLAG-M) is a highly effective salvage regimen in patients with refractory and relapsed acute myeloid leukemia of the poor risk: a final report of the Polish Adult Leukemia Group” PIs: Wierzbowska, Robak, Pluta, Wawrzyniak, Cebula.
– BMA after round two came back with miraculous full remission; negative MRD
– BMT from identically matched sibling after Busulfan and Fludarabine. Engrafted on day +15. Suppressed with tacrolimus and switched to sirolimus around day +20. Began weaning on day +42.
– Planning 4 rounds of prophylactic chemo (decitabine) and considering a DLI.
Okay please register to donate your bone marrow! If you’re at Stanford go to the bone marrow drive! Wish me luck through four more freaking rounds of chemo!
PS I went outside yesterday. I had to hold my breath so that I wouldn’t catch an infection from the spores in the air (seriously…) but still made it out: