Monday, June 28, 2010

Hope everyone had a good weekend! We had the whole weekend off from clinic!

In some exciting news we went to a wig shop on Saturday and I used some of the money raised by my dad's golf buddies (THANKS GUYS) to buy two wigs! (Men buying me wigs - somewhat ironic). Anyway, I had ordered a wig a LONG time ago and had some of Aunt Mary Beth's but I think I may be more prone to wearing the two I bought since I got to try them on and have professional help fixing them and things.

I am at the clinic now receiving both platelets and red blood cells. I have not received red blood cells in a while so hopefully this will give my energy level a bump. My white count dropped down from over 25 to 15.8, so it's still high but going in a better direction.

For reference, a "normal" person's white count should be between 3.2-9.8. A "normal" platelet count is between 150-450, and a "normal" Hemoglobin is 12-15.5 (Sorry to the scientist reading this post - I'm not sure what the units are). My platelets get down to the single digits and usually get up in the 40's after a transfusion. Okay, enough education for today.

They raised the dosage of my chemo last Thursday and unfortunately mouth sores have started to be a problem. As much as I love to eat I do not want to compromise my health just to help with mouth sores - we will learn the things I can and cannot eat. For a good laugh: right now I'm eating a lot of raw crescent roll dough! You just never know where you may have to get your nutrition from.

My only other complaint is that our apartment still isn't staying cool. Yesterday I don't think the living room got below 80! I know this is petty because some people do not have a/c but I am just not handling the heat well at all. Hopefully our landlord can do something about this soon.

Positives: No nausea and no pain other than the mouth. We also got some good news from the Duke financial office. I don't like to write about how much things cost/financial issues but lets all add a thank you in our prayers tonight for this.

Love and thanks to all, Amy

Thursday, June 24, 2010

Hi Everyone!

I hope you all are staying cool in this heat!! Our apartment does not get much below 75 so needless to say I am ripping through the popsicles! Luckily Michael bought me a "portable" little floor a/c last year for our bedroom so it gets cool enough in there to sleep at night. I was mad at him for buying it at the time but I don't know how I would live without it now! I've never handled heat well in the first place and chemo doesn't help this much.

I'm still going to clinic every other day and getting platelets each time. Today was a day off and we just tried to stay cool and relax. It's so confusing to feel so good but be so sick - I know this is an answer to prayer and I appreciate it more than any of you can imagine.

My white count went up a little bit yesterday so they upped the dosage of my Hydrea hoping that would bring it back down. We will see what the numbers are tomorrow.

Again stay cool and enjoy the summer!

Saturday, June 19, 2010

Happy Saturday!

I've kept a promise to myself to update more than once this week. However, there really isn't a lot to update. I'm still going to the clinic every other day. This is so much nicer than going every day - I feel like I get some rest and a little bit of "normal" on the off days. Thus far I have needed platelets everyday that I have gone. However, my hemoglobin and hematocrit have stayed up so I haven't needed red blood cells in a while. My legs are still very colorful but the swelling has stayed down and I am very mobile which is super nice.

I'm still on the chemo pills which are messing with my taste buds and drying my skin out but that's about it (not a lot to complain about!!). I don't have mouth sours but things just don't taste right... If I could live off of blueberry pancakes, Popsicles, and Whopper Jr.'s I may be okay (very weird appetite I know). My white count is continuing to creep up which is not what we want to see. They put me back on the Hydrea on Thursday but this morning my white count had still gone up. They are going to wait until Monday to make any adjustments to my dosages though.

Since I went to clinic this morning I get tomorrow off which hopefully means brunch at the Cheesecake Factory... for those of you who keep up with my blog this is always a highlight of my week... hopefully the french toast is still just as good!

Much love and thanks to you all! Amy

Tuesday, June 15, 2010

Good Evening! We still do not have any results from the biopsies on my legs - nothing has "grown" from them which is good. I am walking again by myself though - I lost about 10 lbs. in 2 days so I suspect fluid had just built up on my legs and I couldn't walk because of it. It is very nice to be mobile again. Everyone was so excited when I actually walked into the clinic today. A lung x-ray last week also showed a pocket of something which caused it to hurt when I took a deep breath. For this I went on steroids and it seems to have cleared up.

They have also cut my clinic visits down to every other day instead of everyday which is a huge relief. My platelets get down to 1 or 2 but they have to balance my mental health with my physical health and this schedule is doing that. I am still taking the oral chemo pill but my white count it creeping up a little but hopefully we can right this off to being on steroids. This weekend we had lots of visitors that wore me out but were so worth it! You have no idea how much you help my mental state.

The biggest news I guess is that all my hair has fallen out again. It's been growing for about a year so this is a little disappointing but a lot cooler and easier to take care of.

As always we can't thank you enough for your prayers and support.


PS - I also ask for prayers for Julie Kiefer's family. She had a transplant about the same time as I did but passed away this morning.

Tuesday, June 8, 2010

Hi everyone, I really shouldn't be so remiss about posting. I think I've only posted 2 or 3 entries during the last two or three weeks.

First - Thanks to everyone for all the Birthday well wishes. Aunt Mary Beth and Uncle Mayfield flew in to see us for the weekend and Chris and Kelly came down for a day or two as well. I also had a nice surprise when I got home from clinic on Sunday. Some of our high school friends had come by to see us (Matt, Rachel, Anne, Travis, and Bubbie- thanks so much for coming). It was great to catch up but makes me feel so old!

I've received tons of cards and some awesome presents. Michael decided that if I couldn't make a trip to New York he would "bring New York to me." He worked it out so that 2 or 3 packages a day arrived for 2 or 3 days (I don't know if this was so much planned or how timing worked out due to last minute shopping). Anyway, I got bagels from a bagel shop in Brooklyn, a NY cheesecake, two framed black and white photographs of the Chrysler Building and Grand Central Station , several DVDs of Broadway shows, and some other things. He did pretty good!

My legs are still very "colorful" and swollen. I am getting better at using the walker/wheelchair but It would be nice to just get up and walk. They did a "punch" biopsy and a "fine needle" biopsy of the spots of my legs but we do not have any results for those, other than the fact that this is NOT Leukemia in the skin. So hopefully we will find out more about that soon. I have been having to go to the clinic everyday because I continue to need platelets everyday.

Other than having difficulty getting around, I really do feel good. I stay tired a lot but that is always a part of the big picture. Thanks so much for the Birthday wishes, praryers, etc., Amy