*Originally posted as an update in my GoFundMe Campaign. View the campaign here: Help Cadence Kick Cancer’s Ass
Hey Guys,
It’s extremely hard to continue to ask for help, but I still need your help.
When we initially started the campaign, I had no idea what to expect in terms of what we would need in any way. I am absolutely blown away by the amount of support we have received so far, and it was extremely difficult to accept the amount of love you have all shown me. I am forever grateful.
As my husband and I learn more about the process, the risks, the extent of recovery time and the reality that my life will change forever, we’ve realized and accepted how much help we will truly need from the community around us, emotionally, spiritually and financially to weather this journey. For those of you that have already helped out in one way or another, My family and I want to thank you again from the bottom of our hearts, and let you know how much we truly appreciate you helping us in this difficult time.
While my life feels out of control right now, I have found peace in learning as much as I can about this process. It not only helps me feel like I am taking control a little bit, but I can better understand this journey, communicate more clearly with my medical team and also with my family and friends who are trying to understand what I am going through.
Here are some ‘fun facts’ I have learned that I wanted to share with you, to help create a better understanding of what everything to do with CML, My treatments so far, and the transplant Process.
Chronic Myeloid Leukaemia (CML):
CML is a cancer of the blood and bone marrow. CML is thought happen when an acquired mutation (or change) in one or more of the genes that normally control the growth and development of blood cells happens. This change results in abnormal growth.
Most people diagnosed with CML have the genetic mutation identified as the ‘Philadelphia (PH) Chromosome’. This happens when a translocation occurs between sections of the 9th and 22nd chromsome. (Essentially pieces of each break off and switch places with each other. It’s like musical chairs for genes. Fun!)
This new PH+ chromosome produces an overactive, abnormal enzyme (part of a group of enzymes called tyrosine kinases) called bcr-abl. This enzyme signals the cell to divide repeatedly which leads to an excess of leukaemic cells in the blood and bone marrow.
Current Traditional Treatment for CML:
CML in the Chronic Phase (What I was diagnosed with) is typically treated with a drug called a ‘Tyrosine Kinase Inhibitor (TKI)’. These drugs are designed to target mainly the ph+ cells in your blood and bone marrow, and stop the signal they are releasing that causes their excess replication. This causes them to resume a normal cell timeline, and eventually die.
As the PH+ cells begin to die off, your bone marrow slowly begins to work normally again, after being overwhelmed by the overgrowth of the leukaemic cells. Although TKI’s are not yet considered curative, Once your counts return to normal, if you reach all your milestones and continue daily TKI treatment for life, you essentially return to a normal-ish life. (I say ‘Normal-ish’, because all my CML friends understand that although you return to your life, the drugs definitely change your every day experiences!)
Why TKI Treatment didn’t work for me:
In many cases where TKI Therapy is discontinued, it is because the person has either developed a resistance to the drug by acquiring further mutations, or because they have severe side effects that make taking the drug intolerable. Neither of those things were my problem.
In my case, we were able to eventually determine over the course of the last year after missing every milestone, that my bone marrow never resumed normal activity after beginning treatment. This essentially meant that I had such a minimal amount of Non-PH+ cells left, that taking enough drugs to suppress the PH+ cells via TKI treatment would suppress ALL of my blood activity and kill me. That’s what led to here- A Bone Marrow transplant!
What Kind of Transplant Am I Having? What the Hell is it anyways?:
I’m having an allogenic bone marrow transplant. It is considered the only curative option for CML and the only way to do it, is to remove all PH+ blood, stem and marrow cells from my body. A bone marrow transplant is *exactly* as crazy as it sounds. It is different from an organ transplant in the sense that the organ is in your bones, so instead of removing it and replacing it with someone else’s, we will chemically kill it with a very heavy dose of chemotherapy, then replace it with someone else’s.
Bone Marrow Transplants are measured in +/- days. You check into the hospital around day -6 or day -5 to have your chemo. Over the next few days the chemo begins to take effect and your marrow begins to die. Your blood counts begin to decline as you head towards day ‘Zero’, and on day ‘Zero’ you receive an infusion of donor cells that are meant to rescue and repair your body. Many people celebrate their Day Zero as a re-birth or new birthday, as the chemo is essentially designed to kill you, and the transplant is literally meant to save your life. Over the coming weeks, as the engraftment of your donor cells takes place (somewhere around day +11) and your new marrow and blood system forms, you literally become a genetically new person. It’s some serious sci-fi shit.
Because this is such a huge and crazy process, there are a ton of risks. Mainly toxic effects from the chemotherapy, Risks of infection because of repressed immune system, rejection of the transplant, or graft versus host disease (which is a chronic from of transplant rejection). They told me the approximate survival rate was 50%. Approximately 25% of people relapse. I was told that without a transplant, already a year into an uncontrolled state of CML, I could expect to live maybe 2-3 more years, but with the risk of going into accelerated stage or blast crisis at any time.
Then what?:
After I am released from the hospital which will be 4-6 weeks after day zero, we will be required to rent a unit close to the hospital for a minimum of 60 days, where I will recover in isolation with a care-taker and will not be allowed to go out in public places.
It may take up to year for my body to make enough blood, so I may need regular transfusions. I will need to take oral chemotherapy to reduce my immune system’s response to the transplant so that it is not rejected for a year or more and any infection, even minor colds, cuts and cavities can present a life-threatening risk within a very short time span.
I’ve talked to many transplant survivors and all of them have had different but difficult journeys towards their new lives, and in accepting and embracing the differing limitations of their ‘new normals’. Above all, each is grateful to LIVE, and I know that is truly ALL that matters to me at this point.
I am honoured to have lived such an amazing life so far, and I truly look forward to Day ZERO and to my second life, so I can live my best life, a second fucking time. Who else gets to say they lived two damn lives?!
Thank you to everyone who has supported me, I look forward to making you proud and loving you back as hard as you have loved me in this life, and in the next. I also look forward to committing a bunch of felonies before my DNA Changes forever. Just kidding 😉 <3
