Tuesday, September 29, 2009

Good Morning! I had a great weekend at home in VA this weekend and got to visit with some wonderful people. It was very nice to see you all and it definitely helped my "boredom level". I saw Dr. Rizzieri yesterday and things still look good. My magnesium was low again (1.4) but they decided to just let me go and see what the level is on Thursday. They are trying to get me to 1 magnesium infusion a week (which means I will probably only have to go in once a week). My Hickman didn't work again yesterday so they pulled it out. It hurt quite a bit but it had to be done sooner or later. It's much easier to take a shower now and much more comfortable in general.

Thanks for all the support and prayers,

Tuesday, September 22, 2009

Hello Everyone! So I have had two appointments since last writing. Thursday I needed magnesium (it was down to 1.3!) so I was at the clinic all day but other than that nothing important happened.

Yesterday I had an actual appointment with Dr. Rizzieri and some of the information we had been told about how the next 6 months or so would go wasn't quite right. They will not wean me off of the immunosuppressant until I reach the 6 month mark (Dec. 6). While I am being weaned off it is important to watch for graft versus host disease. This is around the time we were planning on moving back to Purdue, so my plans may change a little. He said I could move back, but we could tell he would rather keep an eye on me himself instead of referring me to a transplant doctor at IU. So we'll have to make a decision when the time comes. I was looking forward to lowering my dose of immunosuppressant because one of the side effects is "shakiness". My hands are extremely shaky so I cannot write anything legibly (that's why no thank you notes yet).

We got the results back from the bone marrow biopsy and everything looked great (as expected). I am now 98% and 95% donor which is excellent for this far out. Also, my Hickman would not work yesterday so they had to put some type of medicine in it and let it sit overnight and I went back this morning and it worked beautifully.

Much love and thanks,

Monday, September 14, 2009

It is the much anticipated day 100!!! Now that it's here I'm not really sure what the big deal is other than I had to have a bone marrow biopsy which wasn't bad at all. My favorite PA did it - she uses tons of lidocaine so the spot on my back will be numb all day. My magnesium was low this morning but not too low considering I have not had an infusion since last Thursday. The PA (and I) were very happy with that. He said that in the "real world" they wouldn't infuse someone with magnesium until they reached 1.0/1.1 so a mag level of 1.5 really isn't that bad (1.8 is normal). They are planning on "graduating" me from clinic on Thursday. I will then see Dr. Rizzieri (transplant doctor) once a week for a few weeks then less and less. I will also start going back to Dr. Moore (oncologist/hematologist) for check-ups.

Health wise I am doing great but basically being quarantined to the apartment is getting quite old. I would really like to go out to dinner! With the H1N1 flu threat they are telling us to be very very careful. Also, since some have asked, my toe is fine now - it was just an infection in the skin around that spot :)

Hope you have a good week,

PS - If anyone has any medical questions or is confused about something I have written about just let me know and I'll try to clear it up - bone marrow transplant really is a neat process that a lot of people have misconceptions about (thanks to TV and movies).

Wednesday, September 9, 2009

More of the same seems to be the theme of my last few posts and nothing changes in this post. I went to the clinic yesterday the good news is my sodium seems to be consistently normal (so I got to stop taking one of my medications). My magnesium is still low - they gave me 6 grams over 5 hours today and I didn't feel near as bad as I did Saturday. It still makes me hot but it's tolerable.

I also have an infection (maybe an ingrown toenail) in my toe. It was kind of a weird moment when mom called this weekend and asked me how I was and my response was "My toe hurts." It's amazing to think of all that I've been through and now I'm complaining about something as small as a toe. It reminded me that the hard stuff is behind me. However, they put me on an antibiotic for a week just to be extra careful.

Thanks to all - I couldn't have done this without you,

Saturday, September 5, 2009

Good evening. Well I've had two clinic visits since my last update. Thursday's visit was great, both my magnesium and sodium were in the normal ranges. However, they wanted to check how my magnesium did without having infusions for a few days. (my home infusions ran out on Wednesday so I did not have infusions on Thurs. or Fri.). So we went back to clinic today to get my magnesium checked and of course it was low. So I had to have a magnesium infusion in clinic. At home I get 4 grams over 4 hours. At the clinic today they gave me 6 grams over 4 hours and this made me feel really yucky. I got very hot during the infusion and by the time we got home I was nauseous and vomiting. So needless to say I miss my home infusions! We go back on Tuesday to check again and probably get more mag at the clinic. This is the only "problem" that is keeping me from "graduating from clinic" as the nurses say. Also, if I get away from needing magnesium infusions they will take my Hickman out, which will be nice.

Hope you all have a relaxing labor day,