Day 92

March 26th, 2013- It has been a very busy week with what seems like endless appointments. I found myself with very little time in the evening before falling asleep to face yet another day. I kept putting off catching up with my updates and as expected it got more daunting to catch up as the days past. I decided to write one big post to cover all the days I have missed.

This past weekend my brother, William, and his wife, Jessica, got into town. They came a bit early to help us out with Bryce and to visit with us before my transplant. It is so great to have them around because I don’t get to see them often. I also tried to relax this weekend with some success, but I was dreading the craziness of this week.

I have been feeling pretty well overall and I am slowly getting through this crazy week. Monday I had 5 appointments that started first thing in the morning. My first appointment which was a dental consult was disappointing and a waste of my time. From my understanding I thought I was suppose to get a dental cleaning as well as impression of my teeth for a fluoride tray. We waited an hour and a half for the dentist to arrive (he was late) and found out that this would not be a cleaning. He just looked at the x-rays of my teeth to make sure they were cavity free and told me that I needed to contact my primary dentist for a cleaning. The dental assistant then came in and told me she had to leave and to call her to schedule another appointment for the tray impressions. I used to work in a orthodontist office and she could have done the impressions while we were waiting on the dentist to arrive instead of making me come back yet again. I have such a busy schedule that working in one more appointment around her schedule is a huge headache! Luckily my primary dentist was able to fit me in on Wednesday (tomorrow) which is my only free day and we were going to spend that time with Bryce and take him to the Butterfly Garden at University of Florida, but now that may not happen. After my pointless dentist appointment I had several other long meetings with the financial counselor, social worker, and transplant coordinator during the rest of the day. They also worked in a huge amount of lab work at the bone marrow clinic. I think they collected about 15 vials of blood from me! By the time we got home I was completely exhausted from everything.

Today we had an early appointment to talk to the research nurse about the transplant and its side effects that I will be experiencing. I will be getting admitted April 12th and the next two days I will be getting a high dose chemotherapy drug called cytoxan. Then, the following week I will be getting full body irradiation every day, twice a day, ending on Friday morning. After the final radiation therapy  I will be getting my brother’s stem cells (transplant). The nurses say they treat transplant day as a second birthday and have told David that he will have to get me birthday gifts and a cake. I am so scared about this whole next step especially after talking with the research nurse. The side effects are going to be worse than before because of the high dose chemotherapy and full body irradiation. Everything that I have gone through mucositis, GI tract issues, diarrhea, fluid build up, and nausea is going to be twice to triple the pain. They also warned me about the graft vs host disease and that I do want a mild case of it, but nothing else. They say is helps my chances of not relapsing, but its not the end of the world if I don’t get it. I also had my bone marrow biopsy today after talking to the research nurse. It went pretty well, but of course it did hurt. The nurse practitioner gave me morphine and of course I took an ativan before my appointment to help with my nerves and pain. When it came down to starting my adrenaline kicked in and the morphine and ativan had no effect on me. The nurse practitioner was very nice and told me to do breathing exercises to calm myself down and she would be back in a little bit to start again. The second time around I was calm as a cucumber and she proceeded to inject local anesthetic in to my lower back to numb the area all the way to the bone. I am not going to lie it was very painful and I started to cry. After she numbed the area she then inserted the drill needle to get a piece of my bone for the biopsy. This took a few tries since my bone is apparently very soft, but she did get a good sample. The worse part was when she sucked out my bone marrow which always feels like lightening down my leg for a few seconds. The whole procedure took about 15-20 minutes. I wish their was a less stressful way to do these biopsies! The nurse practitioner also talked to my transplant coordinator and they decided that I no longer need my PICC line until I get my central line April 11th. So, they pulled out my PICC line after my biopsy. Yay! I no longer have tubes hanging out of my arm. After my biopsy we had to go across the street to the North Tower of Shands for a ECHO/EKG test, pre-op for my central line, and a pulmonary function test. We ended being at the hospital for 8 1/2 hours!!!! I shouldn’t be surprised since this isn’t the first time, but I am so tired of all of these appointments in one day. I cannot wait until next week….  mostly appointment free (hopefully)!

Bryce has been doing really well this past week. He is finally taking to being on his tummy much better and is shuffling around in circles but not yet crawling. He is loving having so much family around to lavish attention on him and is so cute all the time. We bought a few walkers since he is so happy on his feet but none of them let him get enough traction just yet to really get around. I am drinking in every second but this week is definitely taking me away far more than I had hoped. Hopefully the rest of the appointments stop taking up the entire day and I get to be home more in the next few weeks before transplant.

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