Today marks one year of my diagnosis with Myeloproliferative Neoplasm. I am still amazed how one simple blood test can alter one’s journey. It started with an abnormal elevated number of blood platelets. Normal range is 150,000 to 370,000 per microliter of blood. I had 746,000. In three months, it wasn’t just my platelets were elevated; my white and red blood cells were rising as well. Can they just remove it through blood donation? Well, my blood volume is in regular level, I just have abnormal blood that is causing fatigue, itchiness, bone pain, tinnitus, and headaches. It can also lead into fatalities such as heart attack, stroke, and other blood clots.
Therefore, my first trial was a chemo pills called Hydroxurea. My body disliked this pill. I had mouth sores, severe tinnitus, dehydration, and gout flares. I had it for three months. I don’t mind the side effects, as long as my blood levels are in control. Sadly, the chemo drug wasn’t helping, and my blood numbers were rising. Then, came an expensive drug, Jakafi. A drug that costs about $13,000 a month. What? Yes. Fortunately, it is a new drug, so the company is giving it to me for a low price; $25 a month. I am their guinea pig. I have until January 2020, after that, I have to reapply for prescription drugs financial assistance.
Jakafi, is a target therapy for specific gene called Jak2. It stops the gene to produce abnormal blood cells. So far, I have few side effects and my blood numbers are anemic; meaning they are lower than normal, which is better than overproduction.
The first six months were the busiest; doctor appointments, tests, research, support groups, and just understanding this rare disease. I have met wonderful people around the world that are going through the same thing. I call them blood brothers and sisters. I learn wonderful things about this disease.
Now, I know:
- I can live a normal life as long as I continue to control and check my blood.
- I might have to take chemo pills or this target therapy drug for life.
- There is a chance of progressing to severe leukemia when I turn 60 years old, but I should live my life day by day.
- I will have bad days such as severe migraines, bone pains, annoying ringing in my ears, depression, and inactivity.
- But I will also have good days were I will feel normal. Therefore, I need to take advantage of that.
- Summer is my enemy. Winter is my best friend.
- My medicine can cause weight gain so I need to watch what I eat and must stay active.
- This must sound selfish and surprising, but if I’m going to die, I will die; but I do believe that is not the end.
I’m only been going through this new journey for a year. I know that I am not alone. I have family that supports me and can even joke about my disease. I have friends that understands my situation. I have church family that prays for me. I know that I am in good hands. It will be tough because the research may say lots of negative things regarding the future about my diagnosis, but I know that I have a God that is still in control of everything. Be grateful. Be thankful. Cherish every little things. It sounds cliche, but these little things really do make a difference.
To my Christian readers, we stand in a solid ground with Christ. Continue to believe in Him, no matter what. You can ask why did God gave me cancer or this disease, but God also gave us hope, love, and more. Ask for the Holy Spirit to renew our mind and heart everyday. Let us be a lighthouse that shines our light to others especially through stormy days. There are people out there that are suffering with cancer and other illness, and they are feeling hopeless. We feel their emotional pain, their physical pain, but they do not have the same hope that we have in Christ. Let us shine out light by having that joy and peace in the midst of pain and suffering. Despite the trials, we know at the end of the day, that there is hope and healing in Christ. And, even if we don’t get healed in this earth, we will meet Christ in Heaven, where there will be no more sorrow and pain. I urge you brothers and sisters in Christ, to keep our light shine, so they can see His Glory in us. Cancer is not the end.
Provider's Hands, Heart, and Mind 