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.
Well, I believe most of you know about my draconian measures in regard to avoiding illness. As a recap, I was dx in March 2013, taking close to ten months to complete all four consolidation treatments due to very slow platelet recovery. While getting induction I watched several of my peers pass not from aml or chemo but from infection caused by viruses, bacteria, mold, fungus etc. This scared me. My med team told me in a perfect works,I would be in a bubble during my treatment but that was unrealistic. I could be exposed to my t immediate family, hubby and three amazing daughters who were eight, ten and twelve at the time. The told me to tell my friends and family, if they love me to stay away.
I know this may seem harsh but this sequestration kept me fever and illness free to today. I was blessed by God to be given the opportunity to telework full time for the Air Force starting in May. For ten months I did notenter a public building of any sort. DURING the summer, I kept my girls home, no friends. I had five nights of in patient consolidation about every 60 days. During these times my husband would take the girls for an outing. When my girls started back to school and cheer practice in the fall I subjected then to the most excessive hygiene practice requiring purell baths in the car ride home, complete disrobing in the laundry room upon arrival, shower and fresh cloths. You can imagine how many loads of laundry we did.if they did get sick, which was seldom due to the hygiene practices plus all their teachers agreed to move them away from sick kids in class. They were sequestered in their room.
In Jan Mr med team deemed me in complete remission and told me to go live my life. I did with my mask on. I continued to telework the days a weekand when iI did go in the office, I stayed in my office with the door closed and dialed in to meetings. Flu season was still strong so I confined to avoid public settings even my daughter's cheer competitons.
The national competition was scheduled for April and the plan was to make it a dirty of coming out vacation. Well we made it and this week I went all out. I shed my mask and jumped in the car to drive the 700 miles from Utah to Annihiem, ca. We even scheduled a three day park hopper to the dirtiest I mean the happiest place on earth.
Day one, my middle daughter woke up with white patches on her throat!!! On my goodness, I freaked. My poor long suffering husband immediacy called the front desk at our time share and tracked down the closest urgent care. Meanwhile, I worked the crazy tricare prime referral. My husband and daughter spent close to five hours in the clinic only to have two rapid strep cultures come back negative but because the doctor understood my situation he prescribed an antibiotic. Since then I'm happy to report I have visited several Wal-Mart's and the dirtiest place on earth sans mask and I have lived to tell.
Please pray I stay healthy and that I practice what I preach, trust God to protect me as I know He will.
Thanks to all of you who have laughed with me, reassured me and inspired me
God blessings upon you
Julie
I know this may seem harsh but this sequestration kept me fever and illness free to today. I was blessed by God to be given the opportunity to telework full time for the Air Force starting in May. For ten months I did notenter a public building of any sort. DURING the summer, I kept my girls home, no friends. I had five nights of in patient consolidation about every 60 days. During these times my husband would take the girls for an outing. When my girls started back to school and cheer practice in the fall I subjected then to the most excessive hygiene practice requiring purell baths in the car ride home, complete disrobing in the laundry room upon arrival, shower and fresh cloths. You can imagine how many loads of laundry we did.if they did get sick, which was seldom due to the hygiene practices plus all their teachers agreed to move them away from sick kids in class. They were sequestered in their room.
In Jan Mr med team deemed me in complete remission and told me to go live my life. I did with my mask on. I continued to telework the days a weekand when iI did go in the office, I stayed in my office with the door closed and dialed in to meetings. Flu season was still strong so I confined to avoid public settings even my daughter's cheer competitons.
The national competition was scheduled for April and the plan was to make it a dirty of coming out vacation. Well we made it and this week I went all out. I shed my mask and jumped in the car to drive the 700 miles from Utah to Annihiem, ca. We even scheduled a three day park hopper to the dirtiest I mean the happiest place on earth.
Day one, my middle daughter woke up with white patches on her throat!!! On my goodness, I freaked. My poor long suffering husband immediacy called the front desk at our time share and tracked down the closest urgent care. Meanwhile, I worked the crazy tricare prime referral. My husband and daughter spent close to five hours in the clinic only to have two rapid strep cultures come back negative but because the doctor understood my situation he prescribed an antibiotic. Since then I'm happy to report I have visited several Wal-Mart's and the dirtiest place on earth sans mask and I have lived to tell.
Please pray I stay healthy and that I practice what I preach, trust God to protect me as I know He will.
Thanks to all of you who have laughed with me, reassured me and inspired me
God blessings upon you
Julie
I think we all start out with our hands in our pockets and not touching or breathing in anything bad. My understanding a little also was its good to have a little exposure as whilst your immune is up they can fight off the bugs ? this is why kids and familys that isolate themselves from the big bad world are normally sick all the time ?
Anyway I am glad you are out and about
xxx
You are correct. My anc has been between 2 and the since Dec with my wbc at low normal; however, my med team advised me that my immune system should not be pushed to the limit during child and flu season
Julie
I appreciate your story. I have 4 children but 2 are quite young 7 and 9. Their poor hands were raw from washing and sanitiser. One night we sat at the table my husband myself and the 2 youngest. We were discussing memories mostly about a much loved uncle who I nursed with cancer until he passed. My youngest got a little teary and said I don't remember him mom as the tears continued to flow he continued to say, I don't remember you mom before you were sick. In his childlike way he went on to explain he can't remember me with long hair or without medication and without " wires" in my chest. It broke my heart that these were the thoughts in my sweet little boys head.
At this time I had been following the fb " Mitchell's journey" of a Utah man who had lost his son to dmd. Even though our faiths and fates were not the same his deep love of God and family taught me so many lessons.through all his trials and adversity he spoke of a life worth living.
So though I'm not going to put myself in harms way by bear hugging the woman next door with the flu, I also have come to realise that I only have today, tomorrow is not promised and to worry about such is a waste of the day that I do have. Each day I try to make memories for my young boys that are not filled with medication and aml.
May god always keep you safe.
Majella
So glad to hear you had a good trip with your family, besides your daughter's illness that is, I know my sister is just starting this journey but you are an inspiration and encouragement to her since she seems to be on a similar path that you took. Congrats on a successful journey and much happiness to you and your family!
Your post made me giggle a little. Oh Tricare referrals!!!! The same thing happened to us at Disney World years ago (but with a 2 year old and an ear infection). My husband is as stubborn as a mule. He ate raw oysters (in France) 4 months after his last chemo. I love the French but they are not the cleanest people in the world. I ratted him out to the doc and he told him no raw oysters again ever. This weekend he had, you guessed it, raw oysters. He said these were from Florida so they were OK. Oh please. He does get a little paranoid when folks are sick around his office though.
:) Julie
I don't know what it is about air force people but even though we get tons of sick leave/call, we still come to work sick. It drives mgs wonky.our chief engineer got the flu twice this year and worked through both times. Btw, he did not get the flu shot even though they have them at work ffor free.....arghhhhhh
Julie