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.
Dearest All,
I sometimes struggle with sharing milestones such as this with this amazing group as so many are in the midst of the fight for their life against this heinous disease. And then I remember how helpless and uninformed I was at initial DX almost 4 years ago-March 22, 2013. Knowing intuitively that random web searches would leave me devastated. I tentatively posted on a very low traffic blood cancer forum and by the grace of God connected with Dave Brown.
As always, he was optimistic and welcoming and diverted me here. This support group has been my solace in many, many storms. I am acutely aware that my storms have been miniscule compared to the majority here and for that I have no explanation. Just a grateful and humble heart.
But one thing I know, many lurk here and never post. Many need to see good news as well as the reality of the hardship AML is to many, so I share my amazing news in hopes that it may encourage others. Not everyone DXd with AML have a hard journey. It is possible to traverse the AML journey as I did, relatively easily.
Nov 17th marked 3 years since my last chemo treatment-March 22nd will be 4years since DX!!!
This is one of the positives about AML, three years post treament is a very important milestone and I am embracing it! Relapse at this point is very very rare. I believe for SCT, the important milestone is 30 months.
We occasionally talk here about survival guilt and coupled with that may be easy AML journey guilt. I definitely have that. But as I am a servant of my Lord Jesus Christ, I embrace my role-my purpose. Before cancer, I read The Purpose Driven Life-I had absouletly no idea what my purpose was. Post cancer, I have absoluelty no question. It is to encourage, to pray and to demonstrate that not all who are DXd with this demon have a rough time. In fact, other than slow count recovery between consolidation sessions which earned me extra BMBs, my path has really been smooth.
I was not ill at DX nor have I had a single illness or infection or fever throughout-really. This weekend was the first cold I have had in over five years. Others out there need to know this is a possibility. Maybe not common but certainly possible.
AML has enriched my life, made it more meaningful, made me put this existence in perspective. Life here is fleeting and short but eternity is just that eternal. At DX, ALL I could think about was my precious daughters-8, 10 and 12 at the time. Would I have the opportunity to raise them (most importantly) to teach them to love God and accept the free (priceless) gift of salvation offered to any and all.
Almighty God (for reasons I will not understand this side of Heaven) has granted me nearly four glorious years with the love of my life and my precious daughters. My life is more abundant and meaningful than it would ever have been without the life changing DX of cancer. I am now teaching my 16 year old to drive, attending all of their events possible and trying (and failing) to be a better Christian, wife and mommy each and every day.
When DXd I worked for the Air Force as a civilian in a Management position. Another miracle from God, the AF allowed me to telework one month after DX for almost one year. This year I was promoted to the highest civilian rank, something I never imagined prior to AML. Post AML, all things are possible because once you face down an adversary like AML-all things are possible.
I often visit the Lymphoma Leukemia Society support groups and in particular the CML group which is extremely active and well informed. I think I gravitate there because I remember wishing I had CML. Recently the group was lamenting about how hard the CML journey is. The prideful side of me wanted to jump in and tell them the real hardship many with AML have encountered, especially those who have lost the fight that I loved-Ed, Andrea, Larissa, Jack and Dave just to name a few. Then after prayer, I realized all struggles are hard and who are we to judge which is harder. Many CMLers deal with horrible side effects caused by the TKIs they take so who am I to judge.
I am saddened that this support group is not as active as it once was. I often visit the LLS boards but it certainly is not the same. I know navigation here can be somewhat cumbersome but I encourage you to contribute more. There are people being DXd everyday who need our help, our prayers, our experinces and our love.
What I know to be fact, is this group is FULL of warriors! People I am blessed to call friends. I have been embraced, loved, prayed for and occasional set straight by you. I am so privileged to call you friends. And more so to share in your journey(s) and to be blessed to pray for you daily. I love you all!
Blessings & XOXOX,
Julie
I am so very happy for your continued good health and progress! I too am saddened that the boards have gotten quiet, though I admit I haven't been as active since the formatting on the website changed.
I also hesitated to share my recent milestone in the midst of so much sadness and dark times, but at the same time, success stories on this forum were always (and still are) a large motivator for me. I never thought I'd see the light at the end of the transplant tunnel, but I'm starting to see it. I had my one year "birthday" last Thursday, November 10. That means my transplant twin Andy had his birthday last Wednesday. Happy birthday Andy! Time does march on. I've stopped counting by the days, and now I count by weeks, and even months sometimes. That alone is a huge blessing.
I am still scared sometimes, but I no longer worry daily about GVHD or getting a cold (I have had two in the last six months; the first one came with 103 degree fevers, the second came and went within a week with no fever, and I felt normal-sick for the first time in two years!). I do live with a lingering fear of relapse, but I know I am in God's hands and it is truly a miracle that he has gotten me this far. My doctor tells me the chance of relapse is nearly 0 at the two year point for myeloid leukemias like CEL and AML so I am looking forward to a big sigh of relief next November. My one-year chimerism came back at 99%, and I worried a little that it wasn't 100%, but my doctor isn't worried about it so I'm choosing not to be. I am working again full time. Like you, Julie, I feel much more direction toward my purpose in life and I am living much more purposefully than I ever did before I got sick. I still cannot believe the miracle that my extremely rare disease could only be treated at Stanford, which happens to be 20 minutes from where my ex moved with my daughters when we divorced 7 years ago. Now I am able to live here in the Bay Area for the long term without any more Navy moves, and I have the 50/50 joint custody I always though I'd have to wait until after Navy retirement to pursue. That has been the best blessing of all. I have been praying for years for God to help guide me back to my girls, and he has. I never thought it would happen this way, but I am so thankful in so many ways.
How is everyone else doing? Any updates on Jo, Tony (and Tony jr!), Ev, Tammy? Andy and Sgotee?
with love and gratitude,
John
Julie I too think it is good for people to be able to read about the good outcomes when they are fighting this demon.
I know that you, Lea, Dave B and Cliff helped me alot when we began this journey and although with the new format I don't post as much I do read everyones posts.
John so good to hear from you, I often think about those who havent posted in a while and pray that they are doing well.
Hugs to you Julie and your family.
Karen
Debbie