Still processing...
Beth's Leukemia Blog
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3y ago
I am not sure where to start and honestly am still processing my recent test results. For the first time ever at 6 months post treatment there are no signs of the leukemia coming back already in my bone marrow. This is good news and I should be jumping for joy, but the treatment was too effective and it took the good out with the bad and my immune system is still MIA.  My doctor at NIH said I could try to get the covid vaccine and he would analyze my blood after each dose to see if I develop any antibodies but he is not optimistic because I have "no normal B cells" and my T cell levels ar ..read more
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Proud Parents
Beth's Leukemia Blog
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3y ago
We started this year nervous, but hopeful. In January, my parents were able to get their first dose of the covid vaccination and we were all cautiously optimistic of better times to come. Then February arrived.  My dad woke up one Tuesday morning and thought his back had gone out. Unfortunately, my sisters and I have all fallen victim before to muscle spasms in our back and my father thought that is what he had when he could not get out of bed and his lower back was in a lot of pain. My sister who lives in their area road to their rescue and picked up the prescription his doctor had calle ..read more
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It is finally 2021
Beth's Leukemia Blog
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3y ago
Like many others, we all breathed a sigh of relief that 2020 was finally over and we are sincerely hoping that 2021 is better for the world.   The first day of the New Year started with freezing rain, ice and snow so we were glad to stay home all day. The second day of the year came with news that Katt's head swim coach, who she has really liked and learned a lot from, is leaving. So not the greatest start but we can take these minor bumps as long as we stay healthy. I am finally starting to get some energy back. I am no longer falling asleep randomly during the day and I have not ha ..read more
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Looking for the on switch
Beth's Leukemia Blog
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3y ago
It has been about two months since I finished treatment and while I don't feel as bad as I did the first few days post chemo, I don't feel great at all. I sleep constantly and when I am not sleeping that is all I want to do. I keep waiting for the day I wake up and have energy and don't have to will my body out of bed. It is as if my on switch is stuck off, or worse yet has broken off...  I also get headaches frequently that knock me out (if I don't lay down and take Tylenol soon enough I end up extremely nauseous) and regardless of how many times I go up and down the stairs I am short of ..read more
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Life Post Chemo
Beth's Leukemia Blog
by
3y ago
Last Monday I still had to go see my oncologist and have labs done but I did not have to follow that with chemo for the first time in 6 months. When my doctor asked me how I was feeling my response was very happy to not be getting chemo.  I thought I would magically feel better last week but instead the dex taper was longer on my last cycle, the let down bigger and I think my body in general let down after crossing the finish line. I am feeling better this week (e.g., fewer headaches), but I still have chemo fatigue, mental fog and some other lingering side effects. The worst is definitel ..read more
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Dexamethasone, Facts and Voting
Beth's Leukemia Blog
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3y ago
My chemo side effects have been getting worse after each round of treatment so my doctors at NIH and here agreed a few days of oral steroids were warranted and should help. All throughout this course of treatment I have been getting two IV steroids on the day of my treatments (dexamethasone and solumedrol). For for the last couple of rounds I also been back on my old friend, oral dexamethasone, which has been in the news given a certain President who has covid-19.  The first time I took dex post-treatment it kept the side effects from getting worse. While this is not a resounding endorsem ..read more
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RBG and Gender Equality
Beth's Leukemia Blog
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3y ago
I have been thinking a lot about RBG's death and her legacy. I did not realize that so many rights I have were new to women in my lifetime. By the age of 22 I had my own credit cards, a car and an apartment without male co-signers. I have never thought of that as revolutionary until now even though those changes came for women in the US after I war born. The university I attended only became co-educational a couple years before I was born. I would suspect if I went back and looked all of the schools I applied to have similar histories, yet by the time I went to school they were 50/50 female/ma ..read more
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Mortality Tracking
Beth's Leukemia Blog
by
3y ago
The other day one of the nurses at NIH called me. I thought she was calling to follow-up on some email exchanges about my last bone marrow biopsy and what NIH had received (and had not received) from my local lab.  The purpose of her call was to go over some changes in the consent form for the last trial that I was in since I am still technically in it for "mortality tracking" purposes. Well, I'm still alive so that is good for that trial. Morbid though to think about. I asked the nurse while we are on the phone about getting a flu shot because I had read a few different threads online th ..read more
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Hazy days
Beth's Leukemia Blog
by
3y ago
This protocol is feeling like both my pregnancies.... When I was pregnant with both of my girls I felt really nauseous in the first trimester, the middle was better and it came roaring back in the last trimester.  I felt awful the first several rounds post chemo. Then the fevers subsided and I seemed to bounce back faster but the last couple of rounds have kicked my butt. In the days post chemo, I lay down for a short rest because my headaches and I feel more nauseous when I move around and I wake up 3-4 hours later. I was lamenting this the other day and Katt said, "mom, the only person ..read more
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Back to School (Again)
Beth's Leukemia Blog
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3y ago
 Even though this has been a very atypical summer it has flown by and I cannot believe school starts a week from Monday. It was suppose to start next Wednesday on a hybrid schedule but, like a lot of places, it has pushed back the start date a few days and this summer is going to be all virtual. I'm glad about it because my lymphocytes (which fight viruses) are non-existent so my protection against any viruses comes from my anti-viral meds. This year in particular don't need my children bringing anything home! I have gotten so use to having everyone around our dog and I are going to have ..read more
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