ET: Phone Home, “I have a rare cancer”

I don’t even know how to start. This blog has been on my draft for weeks now.

I guess I have to take you from the beginning.

October 2018 – I went to my primary physician for my annual physical check up. I changed insurance, therefore, I changed my doctor. I usually get the regular physical check up, like tapping my knees, coughing, breath in breathe out, getting naked, you know the drill. But for the first time, my doctor asked me for blood tests. Since I was fasting that week, He took my blood like a vampire.

One week later, he told me that I do not have hypertension, diabetes, STDs, etc. However, he was dumbfounded by my elevated blood platelets. Normal range should be around 140-370K. I have 700K. He asked me to come back next month to do another blood test.

November 2019 – Phlebotomist turns vampire again. Absorbs my blood for testing. A day later, I got the result. Now, the platelets are 800K. My doctor asked me several questions such as surgeries or other severe inflammation. And, I said “no,” just an ear infection during summer, and some back pain in September. So, he referred me to a Hematologist, a blood doctor. He told me to go to UCSD Moore Cancer Center. Wow! Cancer Center, what? But, he gave a hopeful advice that I was just there to get my blood test again, not for cancer.

December 2019 – First time at UCSD Moore Cancer Center. It is a beautiful place, but deep inside, it was filled with hurting people. Honestly, I didn’t know what to expect. It was weird even though I was only there for a blood test. I am inside a Cancer Facility, where there are different kind of patients, from normal to severe. Nevertheless, I still walked through the corridor of uncertainty. So, they took my blood, did a Complete Blood Count, and my platelets were happily multiplying, 900K. So, my hemo told me that I might have an Essential Thrombocythemia. It is a blood disorder. So, she will do a gene mutation test for cancer for confirmation. And, she will give me a call, and I will return in January.

I enjoyed my December, thinking that I just have some kind of blood disorder, that it will eventually go down. I was waiting for that call, but I never received it. So, I celebrated Christmas!

January 4, 2019 – Went back to Cancer Center. Happy New year right? She told me that she left a message, but my stupid phone or whatever, never received it. I received the voice mail 3 days after diagnosis. This was the whole diagnosis.

My JAK2 gene mutated. This mutation is in my bone marrow. It is telling my body to make blood platelets, unfortunately, it is making unhealthy and abnormal platelets. It will cause blood clots and other serious effects if it continues. That is why I am always tired, have migraines, and allergies after shower. I asked my doctor if this is cancer. Candidly, she said, it is a blood disorder, but World Health Organization reclassified it as Blood Cancer, maybe for insurance purposes or research, I don’t really know.

So, yeah, I have a rare form of blood cancer called MYELOPROLIFERATIVE NEOPLASM: ESSENTIAL THROMBOCYTEMIA or for short, MPN – ET. It is in the family of leukemia and other blood cancers, but the one I have is a baby one. There is no cure, and I won’t die from it, I will just have to endure the symptoms for the rest of my life. Unless it transforms into myelofibrosis, scarring of bone marrow, or acute myeloid leukemia. The chances of progressing are slim so I am not worried.

Here’s a definition from Leukemia & Lymphoma Society website (lls.org)

She prescribed me 81mg of aspirin because I am still young. The aspirin is to avoid blood clots. She gave me a list of symptoms. The symptoms that I have are fatigue (and I thought I was just lazy), allergy (I thought I was just always itchy), and migraines (I thought I was just always stressed). She placed me on “Watch and Wait” therapy, meaning I have to report to her if there are other symptoms rising.

February 2019 – Platelets went up to 1 Million. Aspirin is helping but not stopping the overproduction of platelets; I need to take chemo drugs for that. Other symptoms start to rise such as shortness of breath, feet and hands numbness, chest pain, and the weirdest of them all, tinnitus (ringing sound in my ears, that I can only hear, due to the disturbance of blood flow). I have joined an online support group so this cancer won’t make me feel alone. This online support group is the best thing ever! I can talk to strangers that are dealing the same thing. It is so rare, that I think I’m the only one who has this disorder/cancer here in San Diego. The closest one that I know is from Riverside. Shout out to my Blood Brothers and Sisters. And by the way, this disorder/cancer is more common for old folks, between the ages of 60 to 80 years, and most common with women. I just always like to go against the flow, right?

March 8, 2019 – It was my mom’s birthday, what a great gift right? My hemo finally pushed for chemo drugs, Hydroxyurea. 500mg twice a day. And, I have to report any side effects such as vomiting, nausea, diarrhea, etc. Hemo wants me to take it because she doesn’t want me to get bad symptoms such as heart attack, stroke, pulmonary embolism, and other fatal blood clots. This drug will not fix the mutation, but it will help lower my platelets. So, I said yes. The journey begins. I have to report every week and get my blood counted. How fun?!

Honestly, besides the itchiness and coughing, I feel okay.

I will continue my story and awareness of this disorder, cancer, or whatever you call it. Yes. I take chemo drugs, yes, I go to Cancer Center, yes, I have a blood doctor. And yes, I have to go to Pulmonary Clinic, Cardiovascular clinic, ENT doctor, and probably more doctors to meet.

Here’s the thing. This is my new lifestyle now. I am adjusting but honestly, I am okay. My body maybe failing, but my faith is strong, therefore, my spirit is better. This is not my identity, my identity is in Christ, and that is why I am not afraid. I don’t feel sorry for myself. I know it sucks, but I think I’ll be alright.

I’ve been advocating for Child Sexual Abuse, Mental Illness, and now I have Cancer to add for awareness. This is a testimony, and it will never break me.

My future blog topics:

• How you can help?!
• What’s next?
• More info about my disorder/cancer
• Jesus and Cancer
• My hopes
• My fears
• and more online diaries

Lots of love and hope,

Jireh