Life outside of the womb starts with looking at the clock. I'm not sure when they started documenting times as they related to birth dates, but I'm fairly certain most people alive today have the time that they were born documented on their birth certificate. From then on, there are various milestones to hit in somewhat specific time frames and years of schooling that correlate the the amount of time you've spent on earth.
When we're young, we want time to speed up. The years seem so long, and all we want, is to be big- to drive a car, turn 18 and graduate or go out on our own, go to college, etc. We have different timelines in mind for when we'll do this or when we'll do that, and in the process, sometimes we lose sight of the real meaning of life and the impact that we have in our daily interactions with others.
On a most basic level, life is time. I feel like I have become hyper-aware of this since my initial diagnosis. With the emotional rollercoaster than has come with the past couple of months, the amount of pressure to make each moment count while also looking to the future and sometimes accepting that some days are difficult and not that great, has been tough.
After hearing that I had no MRD present at my appointment last Wednesday (yes, very exciting and good news!), sometimes it feels like, ok, life can slow down a bit and moments or conversations don't need to hold as much value as they once did. At the same time, understanding how close I came to my own death just a few months ago and knowing that I could relapse any time in the next few months or years, makes me still want to cling to those same moments and conversations.
Yesterday was my first legit holiday since being sick, and I have to admit that there was an amount of sadness that accompanied me throughout the day. I reflected on last Easter in Woodinville- Remi was almost 5 months old, Elly was there, and we smoked meat and had a fire in the fire pit, and the Easter before that was when we told our parents that I was pregnant. Looking back on those times, I never imagined that all of us would be going through this new journey now, and it's hard to think about what Easter might look like next year or the one after that. How many times in my life will I get to be the Easter Bunny?
While it is easier said than done, yesterday is another reminder of needing to let go and trust in God's plan for me, and only worry about the things within my control. On Thursday, I go back to Seattle for another month of consolidation chemo. I'll have 2-4 more rounds to complete (including this round), and hopefully, we'll all be able to look back on this time and see it as a bump in the road that changed the lives of many (including myself) for the better with each passing year.
About two and a half weeks ago, I had a consultation with one of the transplant doctors at SCCA. It was a long, but very good and informative meeting. A few things came out of the consultation that will help to set the path forward for the next few months of treatment. Prior to the consultation, the lab took samples to complete my HLA (Human Leukocyte Antigen) typing. HLA typing is used to find matches between donors and recipients for stem cell transplants. 10 markers are tested to find a matched donor.
As it turns out, I do not have a matched donor. The best they can find worldwide is a 9 out of 10 match and a couple of 8 out of 10 matches. I realized this was a possibility due to Native American ancestry on my Dad's side since HLA matching relies heavily on race and ethnicity. Luckily, with today's technology, and a lovely thing called cord blood banking/donation, I still have the stem cell transplant option. Due to my age and the fact that I do not have a matched donor, if I have to go the transplant route, my new blood system will be created from stem cells found in donated umbilical cords. Pretty cool, eh?
One of the advantages of the cord blood transplant is that my chances of graft versus host disease (GVHD) is only 30%, whereas with the typical allogenic transplant (transplant from donor) is approximately 50%. GVHD occurs when the transplanted cells attack the recipient's body. This can manifest in the form or jaundice, skin rashes, abdominal pain, joint swelling, weight loss, pain, muscle weakness, etc. It can typically be treated with drugs, but can pose significant health risks. One of the disadvantages to the cord blood transplant is that there is a greater risk of infection to the recipient, primarily due to the increased time it takes the cord blood stem cells to engraft and start creating a new immune system- the longer the time it takes to build up immunity, the longer the exposure to infection. GVHD and risk of infection are issues that any transplant recipient faces, so it's not that a cord blood transplant is any more hazardous than transplant by other means.
Another bit of information that came out of the consultation was the concept of minimum residual disease (MRD), or very small minute, leukemia cells present in the blood that cannot be detected by conventional methods of looking at cellular mutations. Since remission is considered 5% or less of leukemia cells in the blood, there are obviously different qualities of remission. MRD positive indicates that there are leukemia cells present even on the smallest level. MRD negative indicates that no leukemia cells are present.
Today, I had a bone marrow biopsy at SCCA. Surprisingly, it went well, and the most painful part was actually the lidocaine used to numb my hip prior to the remainder of the procedure. The biopsy was necessary to confirm my genetic mutations, see how I've responded to my first round of consolidation chemo, and to determine if I am MRD positive or negative. Regardless of the results, I still have the option to choose transplant, however, if I am MRD negative, it is possible that I could successfully beat the leukemia with 2-4 more rounds of chemotherapy.
There are a lot of other statistics and facts I could go into that factor my decision to choose chemotherapy or transplant, but I could write for days about that information. So, here's my decision summarized:
MRD Positive: go right for the transplant
MRD Negative: 2-4 more rounds of chemo
There is always a chance of relapse with either option, however, based on the positive or negative results, I truly feel that those are the best options for me and the Krutzpack. If I were to go the chemo route and relapsed, I would always have the option to do a transplant later, so I find some comfort in that.
Tomorrow I'll meet with my doctor and nurses and go over my results. I guess I would say, I'm praying and have my fingers crossed for MRD negative and more chemo. Although overall, I'm content with whichever route I need to take because I still truly feel that I can beat this and handle the good and hard times ahead. I'll update about my results after I get them tomorrow.
A quick update about my two weeks at home - it was great. We didn't really do a whole lot, but I was able to spend a lot of time with Remi and was also able to give the dogs some extra love. It was also fun to go to the Robert Earl Keen and Lyle Lovett show this past Friday at the Wilma with Toby and the Nobles. I was really happy that my biopsy was pushed one day so that we could spend this past Sunday at home. For the first day of spring, it was perfect- 60 degrees and sunny. We did some shopping, took Remi to the playground, got a blizzard at DQ, and took the dogs on a 4-mile hike at Blue Mountain. I felt great, like my normal, healthy self. There were a few days while I was home where I realized, I hadn't even thought about being sick, which felt pretty good. In the back of my mind, I've always wondered what day to day life might feel like when my treatment is over, like, will I live in fear of relapse, or will I be able to appreciate each day for what it is. I'm glad I was able to appreciate each day that I had at home. It was so nice to feel like a "normal" person again.
It has been a few weeks since I last updated, so I thought I'd let you know how things are going. I've taken the past couple of weeks to relax and try to do as many "normal life" things as possible.
This past Monday, my blood counts were up high enough that I was able to come home! My counts recovered a couple of days earlier than expected, so coming home early was a very nice surprise. I'll be at home until next Sunday 3/20 when I have to head back to Seattle for treatment. I'll have a bone marrow biopsy on 3/21 to see how I've responded to the first round of G-CLAM, confirm my cytogenetics (genetic mutations), and to determine if I'm MRD (minimum residual disease) positive or negative (meaning there is some evidence of leukemia or no evidence of leukemia). The MRD positive or negative results will allow us to determine whether I can kick this thing with more chemo or if I need to go for the transplant now. I'll go into more detail on that in another post.
For now, the good news is that I feel like my normal healthy self, which I feel pretty lucky to have experienced throughout most of my treatment so far. It has been nice being home and being able to walk the dogs and take Remi on stroller walks too. I've noticed that I can't carry Remi quite as far, but I can tell if that's because I'm not as strong, or if it's because she's put on a couple of LBs while I've been away and my mom strength hasn't caught back up. Either way, things are going well, and I'll have some more detailed updates to talk about later. Now to enjoy the sunny and 50 degree MT weather!
