The Gouker's: September 2022

The last month has felt like it has taken years to go by, and also like it's gone by in a blur. So much has happened, and I've tried to sum it up nicely, even though there have been many days that didn't feel very nice.

Sept 1: Cahl and I showed up bright and early to the surgery center downtown, ready for my hysterectomy. I was definitely nervous, but very ready to have it done. After about an hour and a half, filled with 2 blood draws, an IV put in, multiple meds started- including the first round of sedation, and all the prep work done, my Dr came in and informed us that my bloodwork had come back pretty concerning. My white blood cell count was really high (normal is between 4 and 10- mine was 130 and then 127), and since I am young and healthy with no history or underlying issues, he couldn't perform the surgery without knowing what was causing such high numbers. He had already called and consulted with a hematologist, who was expecting my call later that morning. It was a lot to take in, and we ended up walking out of the surgery center just a few short hours after getting there, with my uterus coming along. Once we got home, I called and made an appointment with my newly referred hematologist, which was set for Sept 12. I spent most of the day in bed, sleeping off all of the medications, before we headed out to Hunter's football game that evening (silver lining- I didn't miss a game!). The next day, Friday, they Dr's office called and asked me to come in the following Tuesday, to have some additional bloodwork done before my appointment. No problem- I went in early Tuesday and had it done, then the Dr's office called me just a few hours later and asked me to come in first thing the following morning (that's not scary at all).

Sept 7: Cahl and I went in for my appointment with my new hematologist/oncologist, and he went over my test results (my white count was up to 139) and informed me that I most likely have something called Chronic Myeloid Leukemia (CML), and they needed to run a bunch more tests to be sure. We spent the rest of the morning doing still more bloodwork, a chest xray, and an ECG. We went back down the following afternoon for an abdominal ultrasound to measure my spleen. Honestly, CML is best case scenario if you're going to get leukemia. It is caused by a mutation of chromosomes 9 and 22, and it is still impossible to know who will be affected. It is not hereditary, but because it effects the genes, it will always be there. It is very slow progressing, and non spreading, and very treatable. Essentially, it involves taking a pill once a day and having bloodwork done to monitor. The goal is to have it in deep remission within 3 years, and continue to be monitored forever.

Sept 13: Once again, a very early morning trip downtown to have a bone marrow biopsy done. Of all the things up to this point, this was what scared me the most. Knowing that they were going to drill into the back of my hip and take out a plug of bone made me very nervous. The staff was really wonderful, and put me at ease the best they could. The procedure went well, and home we came again, to wait more results.

Sept 16: Cahl and I went back to meet with Dr H, my hematologist/oncologist, and learn what the results of all the tests and scans meant (my white count was now up to 144). We were met with more unfortunate news- they still didn't know. What they thought was CML now looked like there was a possibility of Chronic Myelomonocytic Leukemia (CMML), which is a bit more extensive. CMML is treated with a bone marrow transplant, which involves a very heavy course of chemotherapy before, to bring everything (good and bad) in the bone marrow down to nearly zero, before receiving a transfusion of stem cells from a donor. If the transplant takes and works like it should, the CMML will be cured, but it is an intense process. The only way to be 100% absolutely sure of which kind I have, is another blood test, called a BCR-ABL. This one is a genetic test, looking for a very specific chromosome- the Philadelphia Chromosome, which is only present in CML. So I completed that test after meeting with Dr H, and went home to wait some more. I was also able to start a medication called Hydroxyurea, which is treatment for CMML, so hopefully it will help my bone marrow regulate and stop over producing the white cells. I think it is mainly to test and see how my body reacts to taking a chemo pill, so they know what to expect if it comes back that I have CML, and will need to switch to a different chemo pill.

Sept 19: After a nerve wracking weekend, Dr H called me late Monday evening with my test results- my BCR-ABL had come back positive for the Philadelphia chromosome! Such a relief to know- not only the definite answer, but also that I have CML, not CMML! Next up is another ECG and this week's bloodwork, then meeting with the Dr next week to get my treatment plan in place, and make a plan for moving forward.

Sept 29: Cahl and I met with Dr H again this morning. Last week's ECG showed normal results again, and last week's white blood count was up to 147, but today it came back at 126! I was not at all prepared for it to be so much lower this week, so that was great news! I will also be starting my new medication, called Sprycel, tomorrow (or as soon as it arrives- it has to be shipped from a pharmacy in Illinois), and am excited to get going. For the foreseeable future, I will be taking my pills once a day, doing weekly bloodwork, and meeting with my Dr every other week. I will also be doing ECG's regularly (maybe once a month? He didn't specify), and probably another bone marrow biopsy sometime in the future.