Cancer- Not Once, but Twice

In March of 2013 I was diagnosed with thyroid cancer, but not just one but two types of cancer- Follicular and Papillary Carcinoma. I was 39 years old. I had two surgeries, radiation, and suppression medications, which I will take for the rest of my life.

Fast forward, about a year and a half leading up to August of 2023 (I am still trying to recall when I started having all the symptoms), I had communicated to my primary doctor a handful of times that I had been extremely tired and not able to do the things that, before then, was easy for me. I was having heart palpitations, weak spells, I would spend days on the sofa. Something wasn’t right. Another thing was I could hear my heart beating in only my left ear. My doctor blamed most of my symptoms on menopause. May of 2022, I had officially gone twelve months without a period. I was post-menopausal and took the doctors lead thinking that was causing all my issues. This menopause was hell! I went to a bunch of doctors and did test and no one could tell me about my ear pulsing, only what it wasn't.

I went on a cruise in May 2023. I was walking around that ship feeling like an eighty-year-old woman, huffing up the stairs, exhausted! And I started having bad stomach pains that were shooting up into my left shoulder. When I got back home, I called my doctor, and she said it could be pancreatitis and only drink clear liquids and eat soups, Jello, bland foods.

The pain did get a bit better, but weeks following the trip, I started feeling something on my left side, under my ribs, like a lump. I went one more time to my primary doctor. She dismissed it as heartburn and prescribed me some antiacids. I pushed the issue, telling her it wasn’t just heartburn, and she finally did a physical examination of my stomach. I watched her face change in that instance, and I knew it wasn’t good.

She sent me to an oncologist, and he did blood work and a bone marrow biopsy that very day in his office. During the biopsy he mentioned they were not able to get the full set of samples they needed, but that they could get a clear enough result. A week later he called me with the diagnosis- Myelofibrosis. He prescribed a medication and that was it. Something didn’t feel right. I talked to a friend, and she suggested I see an oncologist in Dallas.

I was living in the Houston area and had been planning on moving to Dallas near my cousin before this, but within two weeks she had a crew together and got me moved in with her and I had an appointment set up with a new doctor for another review of my case and treatment. By the time I saw the Oncologist in Dallas my spleen was down into my stomach area. I couldn’t wear anything around my waist and even a bra was painful because it was pushing through my ribs. I had lost a lot of weight because I couldn’t eat much without my stomach hurting.

My new oncologist started me on the medication prescribed by my prior Oncologist in Houston. He also had me doing lots of labs, and frequent. The plan was to shrink my spleen so I could get a bone marrow transplant. I was sent to a transplant doctor, who advised this needed to happen within the year, if not six months or so, with my numbers the way they were. I went in for all the tests, kidney, heart, lungs, etc. It was a whirlwind, and I was freaking out. I was given this book on “what to expect and how to prepare myself for a transplant. This was not light reading! For the first week I couldn’t even open it.

After being on the meds for a few months, my spleen was not responding to the medication, so my Oncologist decided to try a new medication. Before that happened, the first week in January 2024 I ended up in the hospital with pneumonia. Pneumonia was my saving grace! How is pneumonia a saving grace? While there my Oncologist set up a bone marrow biopsy, and this time was able to get an adequate sample. The results changed my entire treatment plan!

The transplant nurse called me to let me know my case was closed, and she hoped to never see me again! We both laughed and I cried. I met with the transplant doc, and she said she had seen my file and, not saying we will never need to, but for now, the case is closed and on the “back burner” so to speak. I will be in the hands on my oncologist from here on.

My initial diagnosis of AML/Myelofibrosis changed. I have CML. He said there was still some component of Myelofibrosis there, but on my last biopsy it was no longer showing up. Since then, my oncologist has done a few more biopsies and they are all showing no change in the cancer numbers going up and still no sign of Myelofibrosis.

So, in February 2024 my oncologist started me on a TKI. Within two weeks my spleen shrunk almost to its normal size, the blasts were gone from my bone marrow, and my cancer numbers were little to nothing. Of course, along with that my other numbers went crashing as well, my ANC, platelets, WBC, the whole lot. Because of this, a few weeks later, I spent twelve days in the hospital for a sinus infection. I get sinus infections every year, but because of my low system, it kicked me hard.

I was able to start my TKI again, for about two months, end of March through first of May 2024, but the lowest dose this time. The dose was still too strong, keeping my system down.

It is now the end of July 2024, and great news, my numbers are finally going up! I started a new TKI, one that I hope I will be able to tolerate and stay on from here on out. It is day three, and so far, so good. I wouldn’t say I am feeling the best, but I will not complain.

The fall of last year 2023, I didn’t think I would be here through the new year. I was afraid to buy a 2024 calendar. I was so sick. I mean, I couldn’t even make my own bed. I cannot count how many blood and platelet transfusions I have had since all this started. Thank you for all those who donate blood/platelets!

Twenty years ago, it was a different ball game, treating CML, but for some, TKI meds are promising. I am excited and hopeful, but cautiously so. I guess that is the name of the game living with cancer.

It is hard to explain to those close to me all that I am going through. It is lonely. so I am glad I found this site and all of you.