Monday, August 31, 2009

Hello All - Things are still about the same as they were last week. I still have low magnesium and sodium. Insurance is making it a little harder though. We found out that they will not cover home infusions. This was a mistake on Duke's part and it doesn't sound like we will have to pay for what I've had so far but after Wednesday I can no longer get magnesium infusions at home. They switched the type of magnesium pills I'm taking to something they think may absorb better. The hope is to get me off of magnesium infusions altogether. Hopefully they will come up with something that works so I don't have to go to the clinic everyday again. Once I am off magnesium infusions it also sounds like they will switch me back over to Dr. Moore (the regular oncologist/hematologist) and I will only come to the bone marrow clinic weekly or every other week. This is the stage when most people who live within a couple of hours go home to an oncologist but living 12 hours away doesn't quite work since there are still some clinic visits. SO we will stay here and are hoping to get back to Indiana by the start of the Spring semester.

Much love and thanks,

Monday, August 24, 2009

I apologize for not updating sooner but there hasn't been much to say. Things are still very much the same except I am now on a Monday/Thursday schedule at the clinic so I only have to go twice a week. My magnesium and sodium are still low so I'm still taking the daily home infusions of magnesium in addition to a mag pill 3 times a day. I also have to start restricting my fluid intake to try to raise my sodium.

On the other hand, I feel great and I can really start to notice my energy level rising - especially if I've gotten a good nights sleep. I even went out to Barnes & Noble today with mom to pick up a few things. Michael flew out to Purdue last night and will be there until Friday so grandma is coming down for the week.

Thanks and Hugs to all,

Tuesday, August 18, 2009

Well, as a lot of you have heard I had a great weekend at "home" in VA. I got to see a lot of family and there were many more people I would have liked to have seen but my immune system is not up to it. I even had to see Michael's new cousin Teagan through the window because she had her 2 month shots the day before. They say one of the biggest things that gets bone marrow patients back into the hospital is that you feel good and feel like doing things yet forget that your immune system is still way down.

Yesterday's clinic visit was good but a little long. They had to give me IGG - which I had never heard of. When I told Michael what they had given me he got very excited because that is one of the molecules their research group has studied. He offered to draw me the chemical structure (bigger nerd than me) but I didn't think that would help my understanding of what it was. IGG stands for Immunoglobulin G. It is basically the same as antibodies and will give my immune system a boost. So I learned yet something else new yesterday.

Hope you all are having a good week - and to some of you have a good day back to school tomorrow!

Friday, August 14, 2009

It's more of the same here in Durham - nothing much to update you on. I still have a Monday, Wednesday, Friday schedule at the clinic. Usually I don't need anything because of the at home Magnesium but this morning I needed some Potassium so I am getting that now.

I think I'm officially feeling good now because the boredom has set in. I spent yesterday alphabetizing my cards... my mom called me a nerd. It gave me a chance to look back through them and appreciate everyone who has supported me through this. I only have the ones here that I've gotten since moving to Durham and they filled up a whole shoe box so far and I'm not done yet. I would estimate there are close to 1000 cards (some are birthday and Easter cards too). Reading them and seeing them makes me feel very loved.

Again, I can't express how much I appreciate each of you,

Monday, August 10, 2009

The trip to the clinic today went well. It took a long time for the blood work results to come back but when they did I didn't need any electrolytes. The rest of my numbers were also very good. Most notably my platelets were 120 - to put that in perspective they got down to about 10 during treatment and 150 is normal - so we're getting much closer to normal. The only concern is that my sodium is still low.

One of the transplant doctors came by today, Dr. Chute (who is a Yankees fan and a Notre Dame fan so we have to watch him). He seemed very pleased and said they would release me back to Dr. Moore (the regular hematologist oncologist) around day 85 (according to my dad's update today is day 65 - it's hard for me to keep up with what day it is). Most people would be released back to their oncologist at home, but they're not quite comfortable with me moving all the way to Indiana and I agree. Michael is still working in a chem lab at UNC and I wouldn't be able to take classes anyway so we're not in a hurry to get back. Hopefully I will work it out to take a distance learning class from Purdue in the fall just to start giving me something to do and get my brain working again.

I'm starting to feel pretty good and almost normal sometimes and I know I wouldn't have handled this so well without all the support and I can't thank you enough for that!

Thursday, August 6, 2009

Day +61

Yeah!! Another day off from the clinic. They have put Amy on a Monday, Wednesday, Friday clinic schedule and it is very nice. Amy's lab results yesterday still showed her sodium level is low ( told to eat more salt), potassium level finally stable ( keep taking potassium pill), magnesium level still low ( keep taking magnesium IV at home and added two magnesium oxide pills each day) and they added back in the anti-viral Acyclovir . Amy said the morning pill count is getting kind of scary. Her platelets stayed the same, RBC and WBC both went up a bit... which is all good news.

While at the clinic yesterday PA Ashely and one of the doctors stopped by and talked about Amy's next stage . After +/- 100 days the Bone Marrow Outpatient Clinic will refer Amy back to an oncologist. She will probably go back to Dr. Moore - Amy was under his care when in Duke hospital for induction/consolidation in preparation for transplant. Although Amy is not 100% yet, and is still having some problems it is exciting and we are so thankful to have reached this point.

Thank you for your love and support .
Love and hugs to all.

Monday, August 3, 2009

Sunday was a good day . Since we had a day off from the clinic, Amy slept in a little longer than usual. Amy has felt good over the weekend. No nausea and her eating is improving and her weight seems to be leveling off. The bottles of magnesium she gets at home are working out great. The bottles take 4 hours to run and that is slow enough that she does not get nasty side effects. It is great to see her feeling better.

Greg purchased a kayak last week, so I told him (when he arrived at the apartment Friday) that was his anniversary present from me... his comment back was "Whens our anniversary?"..... :) We did go out to the Cheesecake Factory for early dinner on Saturday. It was very good but crowded and noisy. We decided next time we would find a smaller quieter place....we are getting old.

We are so thankful for our family and friends.
Love to all,