Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Greetings and Blessing to All, Today I celebrate my 5 year since diagnosis of Acute Myeloid Leukemia! Who celebrates being diagnosed with AML or any cancer for that matter? But let’s be honest, in the cancer lottery, AML, is not one of the preferred. At least if you cling to cancer stats which is something I highly discourage. First problem with AML stats specifically-the mean DX age of 68ish. I have spent substantial time around several AML support groups and I routinely meet people in their 50s, 40, 30 and 20s stricken with this demon. An amazing Christian brother of mine who also is a physician recommended I read an article on cancer stats that I re-read often-The Median is Not the Message” I highly recommend it! http://www.cancerguide.org/median_not_msg.html So back to my celebration! First, thing you must know about me- I am an on-fire, Bible believing, sold-out, saved by grace, forgiven sinner! Second, I absolutely do not believe God gave me cancer. Because NOTHING bad and I believe ALL of us know cancer to be very very bad, comes from a loving, gracious merciful God such as ours. Nor is cancer some sort of evil test where God is testing me or trying to prove my strength. For I firmly believe 2 Corinthians 12:9- "My grace is all you need. My power works best in weakness." So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. Fighting cancer certainly did not show me how strong I am/was, the opposite occurred. For the first time in my adult life, I was completely out of control, helpless, feckless, as powerless as a new born babe. And in that laid bare state, for the first time in my life, I completely surrendered my life, my will, my future, my children over to almighty God. And HE was and is faithful! I truly left the peace that passes ALL understanding like a blanket of comfort on my darkest days. That act of surrender and blind faith changed my relationship with my Lord and Savior forever and I will never be the same. That is what I celebrate! Five years ago I was an otherwise healthy 48 year old mother of three amazing daughters, 8, 10 and 12, married to the love of my life. I work full time for the US Air Force as a civilian manager and teach Master’s level graduate courses part-time primarily online. I had absolutely no symptoms at DX other than a few bruises (very typical for me) and a very wonky CBC that was done as part of routine blood work. At DX, my platelets were 98, WBC was 1ish and my ANC was .02 and had been there for months I would discover later. Like most of you, I was referred to a hematologist who, based on the CBC and the fact that I had not had any illness to include a cold for years, did not think “I had anything to worry about”. But just to be safe, go get a BMB to rule anything out. 12 hours later, I was admitted to the hospital with confirmed AML with the dreaded 7+3 (red devil) chemo dripping into my Hickman six hours later. I was blessed with an amazing medical team at LDS Hospital in SLC, UT led by the amazing Finn Peterson from Denmark who has been specializing in acute leukemia for 30 years. He immediately saw the shock an awe in my eyes and graciously prescribed anti-depressant and anti-anxiety meds that helped me so much during my year of chemo. Dr. Peterson did an amazing job literally drawing on my stainless board in my room cytogenetic components of AML because my very first question was, is AML hereditary with thoughts of my precious daughters. He confirmed not hereditary but certainly genetic-wait what? He asked about exposure to benzene and explained that people around military installation (yep 30 years of that) and those exposed to secondary smoke (yep both parents chain smokers) had higher chances of blood cancers. BTW, my brother was DXD with NHL about a year after me. So back to my previous comments about cancer’s cause. Yes, I believe there is an environmental causation and possibly hereditary for some types but I do think most cancers are random-as discussed in the John’s Hopkins Study. https://hub.jhu.edu/2017/03/23/cancer-mutations-caused-by-random-dna-mistakes/ And whenever I would start down a pity party about “why me” relative to cancer, my mind would always go to children stricken with this disease. As adults we can be reasoned with, made to understand why this procedure (BMB) is necessary. But a child. Good Lord, how heart wrenching that must be. My advice to any adult doing the why me business, go volunteer in a children’s cancer ward. That syndrome will be cured forever. He further explained the three categories of AML-favorable, Intermediate and Unfavorable. If I was in the favorable category, I may be able to be treated with chemo only. Otherwise- Stem Cell Transplant was the treatment path. He promised I would know my sub-type and any mutations, FLT3, CEBPA ect within two weeks. But job one was to get me into remission. Fortunately, I tolerated the Induction chemo well with only slight mucositis and no other complications, not even a fever. I managed to walk 3 to 4 miles everyday whether I wanted to or not. As promised, 2 weeks in I was overjoyed to learn I had Inversion 16 with no mutations, chemo only for me. I spent 28 days in the hospital and sent home to return in four weeks to begin consolidation. Now, this is where my smooth cancer journey goes somewhat off the tracks but I share it in case others have or will experience this anomaly. The consolidation process for AML has been the same for decades. 30 days between doses, six days getting chemo HiAriC, nadir with transfusions for a month and back for another round. Not this girl, although I continued to feel fabulous, telework full time for the Air Force my bone marrow took a huge hit. I gave myself neopegen shots every day from day 10 to day 40 because my whites would not come up and my dang platelets were the scourge. The required platelet number to begin another cycle of consolidation was 100, well mine never got there. In fact, my consolidation sessions were twice as long as advertised with a reduced dose from 3.0 to finally 1.5 (the European standard BTW). We American’s like to hit it with the big guns. The great news is by the grace of almighty God who guided my amazing medical team, I am in remision and living a very abundant life. My med team followed me with quarterly CBC and PCRs for four years and due to over 40 red blood transfusions I require phlebotomies to decrease the iron stores on my liver. In Jan I will be deemed cured by my team. I am forever grateful. I work fulltime, take a month long European vacation with my girls and hubby every summer (because not to be morbid but tomorrow and your 401K is not guaranteed) and feel amazing. I stay here because through all of this, God revealed my purpose. To encourage, to pray, to give hope to those in the fight of their lives. When I was DXd I just wanted to meet/talk to someone who survived. Hope is so critical. Not all who are dxd with AML have a difficult path. We all hear about the hard paths, I want people to know some have a rather uneventful journey. I pray someone reading this is helped and encouraged. Blessings, Julie
:)Julie