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.
This topic has been addressed here before and I apologize for the redundancy. Keir is now about 125 days post transplant and doing very well. His hem/on has aid as long as he feels well he only needs to be seen every three weeks for bloodwork and a check up - this after an average of 2-3 visits and blood work per week for months and before that , near constant monitoring.
He can do a few more things but not live a normal life now - still can't go back to work (he will need to find work as his job is long gone), has to follow a somewhat modified low bacteria diet, etc. Crowds are to be avoided, as are movie theaters ( a big deal for a film editor!) and as a young person, so are a lot of the places he used to frequent as part of his social life. Public transport is discouraged and we are still living with my parents during our interminable house renovation. So we are neither fish nor fowl.
Keir is handling this fairly well thoughe he has some anxiety and feels a little displaced and lonely. But I am finding myself even more anxious than before (I thought I had reached Absolute Anxiety). EVERY time he seems a little tired or whatever, I get alarmed. I feel we have been struck by lightening once - Keir was 29 at diagnosis - and thus are a "rod" for this sort of thing and find myself expecting that other shoe to drop. It is a joy robbing thing, to say the least, and an ungrateful lway to live. I know that the fear of recurrence is simply part of having this illness and will not go away altogether but it is ruling my life. I am seeing a new therapist but so far that has not provided much relief.
It's a distressing thing for many reasons - you wait and wait for that 100 days to be over for some relief from the nonstop anxiety and to find it actually gets worse was quite upsetting. I'd love to hear how others deal with it.
He can do a few more things but not live a normal life now - still can't go back to work (he will need to find work as his job is long gone), has to follow a somewhat modified low bacteria diet, etc. Crowds are to be avoided, as are movie theaters ( a big deal for a film editor!) and as a young person, so are a lot of the places he used to frequent as part of his social life. Public transport is discouraged and we are still living with my parents during our interminable house renovation. So we are neither fish nor fowl.
Keir is handling this fairly well thoughe he has some anxiety and feels a little displaced and lonely. But I am finding myself even more anxious than before (I thought I had reached Absolute Anxiety). EVERY time he seems a little tired or whatever, I get alarmed. I feel we have been struck by lightening once - Keir was 29 at diagnosis - and thus are a "rod" for this sort of thing and find myself expecting that other shoe to drop. It is a joy robbing thing, to say the least, and an ungrateful lway to live. I know that the fear of recurrence is simply part of having this illness and will not go away altogether but it is ruling my life. I am seeing a new therapist but so far that has not provided much relief.
It's a distressing thing for many reasons - you wait and wait for that 100 days to be over for some relief from the nonstop anxiety and to find it actually gets worse was quite upsetting. I'd love to hear how others deal with it.
dave j.
I so agree with Dave's comment-being the parent must be so hard. You have been Keir's everything for this LONG haul with all it's twists and turns and you both are due some semblence of normalcy-the new normal anyway.
I cannot speak to post BMT as I had chemo only but I can tell at 15 months post DX and months since last chemo there are days I feel like my journey was a dream. This does not mean that occationally relapse sneeks into my brain especailly with Tony and Abby's recent expereinces. Also right before my monthy labs I get anxious or when I see a new bruise. I still have days whne I'm tired but my husband reminds me that after a long week at work I've always needed some extra sleep on the weekends.
As you know I spent ten months very isolated but was allowed to telework full time. I have no restriction however I still avoid sick looking sounding people and small children. Furtuntely my coworkers are very accomidating and stay away when they are unwell.
I know that Keir has stayed active throughout and has been optimistic. Hitting the life reset button at 29 must be daunting. I beleive he has already been hit with lightening for a second time with his miraculous healing and recovery from SCT. Please know you both are in my family's prayers.
Julie