Today is “Day 101”.
This means nothing to most people. In my current world, day 101 means new life has started…again.
101 days ago, I received a bone marrow transplant at University of Kansas hospital.
“BMT” = Bone Marrow Transplant
The transplant itself was actually quite anticlimactic. It was just like any other blood transfusion. It only took about 20 minutes. It was painless.
My physical health before and after the transplant were not so much.
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In late July of 2024, my doctor requested that I get a blood test done at KU Cancer center. This was out of the blue. I was feeling really healthy going into the Summer of 2024. As I was turning 50 in Ocotber, this was not part of my current life plan.
Up to this point, I had been working out and getting in shape. The goal was to be in the best shape in 20+ years. There were no signs of sickness going into the late part of July other than some bruising, which, as a naturally clumsy person, happened frequently.
This bruising was a little different than in the past. For one, it did not go away as quickly as normal. It was also showing up in unusual spots, such as my abdomen and quads. Bruising from standard clumsiness usually appeared on my arms, shoulders, or sides. It really depended on what I ran into during the day.
Regardless, I called the doctor back to ask what the blood testing was in response to. His response: low vitamin B-12.
My initial response? Screw the blood test. I will just up my B-12.
After a second message requesting that I really need to get it checked out, I followed up. In the last few days of July, my blood was drawn and an unexpected journey began.
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I began journaling about this ailment on August 6, 2024. At this point, I am leaving the journal entries unedited. The only exception is if I noticed a glaring grammatical error.
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August 6, 2024 (Journal entry)
I had my 2nd visit to the cancer center today. My CBC/DIFF blood tests show low white blood cells and platelets,
This is a scary moment. It all happened at a horrible time because I just started a new job and now I have to find a way to explain what may be on the horizon.
This coming Friday, I am having a bone marrow biopsy for the first time.
More will be revealed.
The first thought that comes to my mind is something that I heard in the halls of Alcoholics Anonymous some time within the last decade:
If you worry, why pray? If you pray, why worry?
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September 18,2024 (Journal Entry)
Research from Prescription for Nutritional Healing
Diets for anemia and/or blood cancer should include the following:
- apples
- apricots
- asparagus
- bananas
- broccoli
- egg yolks
- kelp
- leafy greens
- okra
- whole grains
- parsley
- peas
- plums
- prunes
- purple grapes
- raisins
- rice bran
- squash
- turnip greens
- yams
- Ingest one tablespoon of blackstrap molasses (2x daily)
OMIT the following:
- most nuts and beans
- chocolate (or cocoa)
- kale
- rhubarb
- sorrel
- spinach
- swiss chard
- soda
- candy
- dairy
- coffee and tea
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October 4, 2024 (Journal Entry)
It is my first day out of the hospital. I was in there from September 30 through October 3 for ATGAM therapy. The initial treatment was not as bad as I originally feared. Lots of weird things have been added to my new regiment, including the addition of a picc line in my right arm. The line runs from a spot on the inside of my right bicep and winds its way to above my heart. Nothing seems to be actually holding it in place inside my body, which is very weird to me.
All of a sudden, I feel like a walking compound pharmacy. I never thought I would require a medical regiment at this age. I figured I would deal with this stuff when I was much older.
I just hope this all works. I hate putting others through this. However, if I successfully make it through this process, which I currently feel 83% optimistic, I can help others later. I enjoy helping others.
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October 4, 2024 (Questions for Doctor)
- Do I need to have caps for my picc lines? I was told I should have them at the hospital. Then, I was informed that I didn’t need them at the clinic lab. I feel safer with the on.
- Hospitals are extra cautious due to the possible infections from other patients and visitors.
- How do I alleviate my hoarseness from the medication?
- Rinse with saline and use “magic mouthwash” (numbs pain).
- Both side effects are from the Cyclosporine (immunosuppressant).
- Are THC/CBD edibles ok to for nausea and/or pain?
- It is not suggested because THC/CBD may interfere with prescriptions. It may also interfere with platelet regeneration.
- Absolutely NO smoking. Lungs are extremely sensitive at this time.
- Are there clinical trials available if this first procedure (ATG therapy) does not work?
- At this time, there is not an active clinical trial for Aplastic Anemia. However, there are some major improvements in treatment coming soon. They are still waiting on FDA approval.
- Do I have any stems cells available to use for this procedure?
- Based on the lack of marrow from both biopsies, there is not enough stem cell production in my own bones.
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October 8, 2024 (Journal Entry)
To do: Labs at 7:15 a.m. followed by meeting with Dr. Singh at 8:15 a.m
The drive is getting easier, but I hate putting the mileage on my car. At least I can write a lot of this off in the end.
Yesterday was the most uneventful of all birthdays. A person’s 50th birthday is usually a big deal. Due to medical difficulties, it looks like the celebration shall be postponed until October 7, 2026.
I planned on going to a morning movie, but was worn out after our park walk in the morning. I stayed in bed on and off for around 6 hours. This is normally unheard of for an overly active person who prefers living life. I knew this would be a problem, but once I am in the midst of no immune system, I should follow basic suggestions to keep myself afloat.
Today, I will attempt to see a movie in a uncrowded theater if I am not stuck in the clinic all day.
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October 8, 2024 (Questions for Doctor)
- The “magic mouthwash” works for about 2 hours. A refill will be needed to make eating tolerable. It is not very effective with my hoarseness.
- Continue to gargle with saline in between use of “magic mouthwash”
- Blood pressure has been running high. My weight has increased by 20 pounds in under 2 weeks. My urine is very concentrated regardless of my liquid consumption.
- These are all side effects from 100 mg prednisone prescription. It is mostly water weight. It will dissipate over the next month.
- With upcoming ATGAM treatment, I will need a letter sent to employer to have the next two weeks off of work.
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October 9, 2024 (Notes and Reflections)
- Labs need to be rescheduled for work-appropriate times.
- 7 a.m. Friday 10/11
- 7 a.m. on Tuesday 10/15
- 11 a.m. on Friday 10/18
- I asked schedule to keep lab times at 7 a.m. or 7:30 a.m. during the week
- If I have to take a full day off for any of these appointments, look into early double features at theater (The Substance and /or new Terrifier movie?)
I feel better than expected today. The walk was nice and I didn’t feel the need to stop and catch my breath as much as Monday.
I felt like I accomplished work that I needed to catch up on. I have a good support system in place. I feel optimistic. I am not fearful of much at the moment. I am behind on the “healthiest I’ve been since my 20s” goal, but that will come back like a rubber band.
Fight. Fight. Fight.
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October 15, 2024 (Daily reflection)
One of the nurses at the clinic (Makenna) shared a personal connection to my Aplastic Anemia diagnosis. It gave me hope.
Her dad was diagnosed with Aplastic Anemia at the age of 60. This was approximately one year ago. At the time, she did not know what much about the diagnosis.
He received the ATG treatment and has been in remission for the past 6 months. At first, the treatment looked like it was going to be unsuccessful when they did his 3-month labs. About a month before the doctors were set to administer at bone marrow transplant on him, the numbers miraculously began to look better.
Thank you for the story of hope, Makenna.
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October 17, 2024
Morning labs had to be drawn manually (i.e. not through my picc line) due to a Cyclosporine level check.
Bryan (the lab guy) did such a great job with the needle.