It’s been a few days since I have written anything, and I can’t seem to get any sleep tonight for whatever reason; so I thought I would blog a little bit to let everyone know how things have been going and what the plans are for the near future.
I spent most of this week at my parents’ place in Two Rivers relaxing, but had to pack Thursday night because I had an appointment at Froedtert at 9:30 the next morning. Because I figured I was going to be readmitted into the hospital soon, I figured that I would just move back into my apartment in New Berlin and hang out in Milwaukee/Whitewater until I had to go back. So I packed all of my things from the hospital into my car and headed down.
So anyways…I moved back in and headed over to Froedtert for some blood work and my appointment. It’s always kind of weird for me when I go to the cancer clinic on the third floor of Froedtert, because the average age of every single person there has to be about 60. Every now and then I will see someone near my age and I will initiate some sort of conversation with them, because I feel that I can connect with them on a level that I am really not able to connect with someone that is 30+ years older than me. Don’t get me wrong, I still communicate with all of the patients that are on the BMT unit regardless of age and make a lot of friends in the process, but it’s just different when I see another 20-25 year old sitting around the clinic waiting for blood work results or something. However, this past visit to the clinic, I didn’t see anyone near my age. The closest person may have been 45 or so. I get a lot of looks from everyone around there and I almost feel like they feel sorry for me or something. It kind of bothers me, because they are in the exact same boat that I am in. Everyone there is dealt a real shitty hand of cards and we are all there to play whether we like it or not.
They changed my dressing on my picc line and took blood to do a HEM/ONC panel. Basically, it is just to test to see what all of my counts are at and to see if there are any circulating blasts in my blood. Afterwards I waited in the lobby area for them to call me in to see the doctor.
So I went in and waited maybe 30 minutes or so and Dr. Bredeson came in (I like him). Immediately we went over everything that has happened and what will happen. I wrote down notes and such just to help jog my memory when I’d either have to tell my mom what we talked about or include the information in this journal. So we started off just talking about how my first round of treatment went. I came into the hospital on December 24th and did a bone marrow biopsy at which time said that 94% of my cells had traces of the MLL translocation (leukemia). They gave me a five day cocktail of chemotherapy and I spent the next few weeks sitting in a bed, getting hammered by all of the side effects. They did a biopsy 14 days after the my chemo was done and it showed that 2% of my cells now had traces of leukemia. One of the doctors strongly felt that the last 2% were still dying and wanted to do another bone marrow biopsy in about a week. So I waited around a week or so and we did another biopsy. This time it showed 0% of the cells had traces of the MLL translocation. In other words…I was in remission! However to be certain, the next step in my treatment is to get a bone marrow biopsy to verify the results of the last one.
So here’s what I have in store:
- Jan 29: Bone Marrow Biopsy
- If I want sedation, I need a ride to and from the hospital
- Or…I can man up and take the excruciating pain and drive myself there and back and be given some lidocaine around the area.
- Jan 31: I wil be readmitted into the hospital
- We will begin a second round of chemotherapy.
- Regardless of the results from the bone marrow biopsy, they will still give me this chemo.
- It will most likely be the exact same chemo they gave me for the first round since it worked so well
- I went from 94% leukemic cells to 0% …RARELY happens
- About a week or so into treatment I may be released from the hospital under a few conditions
- I am generally feeling well
- No fevers
- No bad side effects
- I will then have to go back to the hospital for appointments twice a week to get checkups
- Blood work and doctor talks
- And of course…this is only if all of the previous conditions are met.
- Early-Mid March: Bone marrow transplant
- Give me Busulphin (an extremely toxic chemotherapy) for 5-6 days which will completely destroy my bone marrow and basically everything else in my body at the same time
- Harvest stem cells from sister and transfuse them into me intravenously
- Stem cells will find their way into my body and look for what may or may not be missing. Upon finding that I don’t have ANY bone marrow, the stem cells will go into my bones and begin the process of producing my sister’s bone marrow!
- Once her bone marrow is in my bones, I will then start producing HER white and red blood cells
- My blood type will actually change from A+ to A- …pretty crazy stuff right?
- If you were to take a drop of my blood at that time…and a drop of her blood…we would appear to be the exact same people!
- The idea behind the bone marrow transplant, is to give me an immune system that knows how to destroy leukemia cells…hopefully, hers does the trick.
- Sorry to bore you with this…just figured a little fun facts might be interesting to know.
- Sometime in April, I will be released and will have to live a very very healthy lifestyle.
- My immune system will be BRAND new.
- ALL of my immunities and resistances will be reset to ZERO. This means I can get chicken pox and all of that AGAIN.
- About a year after the transplant they will give me all of my vaccinations…AGAIN.
And lastly…I asked the doctor during my appointment about me inheriting my sister’s hormones, because this was something a few of my nurses had been telling me for weeks. For the past month, my nurses had been telling me that I would inherit my sister’s hormones and produce estrogen instead of testosterone.The doctor looked at me and just grinned. He said, “Who told you that? You don’t inherit their hormones…just their bone marrow/blood!” This entire time I was under the belief that I would have to worry about growing “female attributes” for the rest of my life, and now I find out that it was merely my nurses playing a joke on me. Well, if anyone has any good ideas on how I can get them back, please let me know.
So, I’ve got a bone marrow biopsy on Tuesday, and I am going to be readmitted to the unit on Thursday. Until then, I plan on doing anything and everything I can. Now that I am finally feeling “normal,” going back into the hospital for more chemo is the last thing on my mind. However, it is something that I know that has to be done and there really is no choice in the matter.
I’ll close tonight with a really cool quote I found on the internet.
“ It’s not the years in your life that count. It’s the life in your years.” ~Abraham Lincoln