D-Day on Friday the Thirteenth (of March, 2015)
Friday early morning I set my alarm clock to wake up to call my general practitioner when their phones turn on to see if I can come in for an urgent visit. I think it is an allergy or something and my sinus infection has still not cleared after 14 days. Well, it's not an allergic reaction and my life will never be the same.
Friday the thirteenth, March, 2015 is day a my life was totally turned upside down and would never be the same. I knew my Drs office opened at 7 am for calls and blood work. So I set my alarm and called at 7 and explained my complaint to the woman on the phone. She said the Dr comes in at 8 and I should come right over. Since I didn't know what was going on, my mom drove me to the Dr and also joined us in the room for the exam. As soon as I walked in, 2 of nurses and the office manager ushered us right back to a room. They quickly start taking my vitals, one drew blood from my finger, while the manager ask what was going on/why I came in?
. Another minute later the Dr came in with the CBC (compete blood count), "you will deff need to be further evaluated at the hospital, and probably need a blood transfusion". It ends up that the rash and bruises (by then I had nearly 30 bruises, some pretty big) were all indications off blood with clotting issues and the CBC confirmed that and showed I had only 13 platelet count (norm is above 130). She gave me a note and recommended we request this Dr group, who specialized in hematology and oncology at Winthrop. She Even offered to call an ambulance because I was comparing of shortness of breath. Even though they were oncologist, I assumed I was seeing them because of the anemia and didn't think twice about it. My mom and I headed home and discussed which hospital we should go to... Which ER would have the shorter wait? Give us the best treatment? We came home and called my dad and said we'd discuss it at lunch and then headed over. At about 2 pm we finally made our way over. I even through together some things in case they admitted me, I'd have my own pjs and pillow.
. We waited about an hour and half to be taken back for a bed in the ER and two things hit me as "strange". They wanted to take me for a had ST because with platelets, now down at 7, their priority is that I don't have bleeding in my head/brain. When the transplant came he handed me a mask and said, " please wear this for your protection". That threw me for a loop... Why would I need a mask for my protection... Little did I know that would be the first of wearing masks for atv last a year (still wear them in crowds/airplanes bc of the recirculated air).
. Not too long after the CT the Dr (a fellow from the hem-oc practice, Ameshe, no last names.. everyone was on first name basis) came into my room and she said, "i had a chance to do a blood smear and I'm 95% sure but you have leukemia, we need to do a bone marrow biopsy, but you have leukemia blasts in your blood. Your white count is extremely high, normal is 3.6 to 11.0. Your wbc is over 150,000!!!. But what that shows is the Leukemia cells have crowded the marrow and is now spitting out blasts immature cells and they don't function properly." It was like seeing the atomic bomb and being gut punched. I was instantly in tears, couldn't breathe and completely in shock. I looked at my dad who is usually my rock, but for the second time in my life... I saw him cry. He squeezed my hand and said "we'll get through this". Ameshe gave me a huge hug and said how I needed to be brave and strong now.
. That night I was admitted through the ER in a private room bc off my susceptibility to infections. The next day Ameshe woke me up at 6 for the biopsy (which they did right in my room on muy bed!) and then brought to the OR to have a central line put in instated of the IV. That day was the first of my one month stay in the hospital, and that night they started my chemo, this regimen was 7 days straight of 24 hours of one chemo, at the same time, 3 of those days I received another chemo in addition to the first one. They call this cocktail "induction."
Since then I have completed 5 rounds of chemo, had over 90 transfusions, many rounds of antibiotics and over 100 nights in the hospital!. A year has passed from that day and my levels in my blood are still not "normal" but on the other hand my last 4 biopsies have been negative for leukemia!!!. AML is a very stubborn cancer. Although it responds to treatment, it can hide and wait to come back. I just have to go ahead try to resume and adjust to my new life. Should it come back I will need a bone marrow/stem cell transplant.
I share my story for 3 reasons, it is healing to let it out. But more importantly, I had all the signs of leukemia yet was oblivious as to what those were. In the weeks leading up to the ER visit I had seen several Drs and they also didn't realize what was going on. It was only when I saw the GP who has a broader picture of me to see the warning signs. Just like we know early warning signs of breast cancer or prostate, lung, cervical, and even skin cancer... We need to know the signs for leukemia. It makes me angry how little the public knows about leukemia... As well as the misinformation. Until it happened to me, I thought leukemia was a childhood disease.. However you can get it at any age. Yes it is most common in young children and older men ( over 60). I share also to inspire people to donate (blood, platelets), have your mouth swabbed (with a Q-tip) to have your stem cells entered into the bone marrow/stem cell registry (#bethematch), donate money to fund research for new drugs for better, easier treatments, looking for a cure!!. And of course everyone is welcomed to join my team to walk in Light the Night in October (#LighttheNight).
Warning Signs:. Extreme fatigue (there were days when I was so tired I literally went to bed without dinner and slept through the night), many bruises, bruises you don't know where they came from, petechiae rash (the little red spots all over my body, they are caused from bleeding under the skin), infections/wounds that won't go away or heal, unusual bleeding ( your teeth/gums, nose, even hemorrhoids or vaginal) and of course, abnormal blood counts. #LLS #ACS #bloodwise #bethematch