It’s good to be online blogging again! Thank you for all of your concerned messages when the site was down.
Like Van said all of my test results are coming back clean. I was especially excited about the negative MRI scans. No leukemia cells in the noggin! I also got my 2nd skin biopsy back and it was again negative for Skin GVHD. Luckily, the spots are going away on their own with the help of the topical steroid cream. My urine sample was also negative for the BK virus and my blood sample was negative for CMV. Today my nurse called me and said that I have been given the go ahead to stop all IV meds.
I had a final check up with the Oral Medicine dentist and he says that I may have the slightest mouth GVHD just based on the coloring of the sides of my tongue and the insides of my cheek. Also the skin on my lips slough off every 3 days or so no matter how much I mosturize them. My mouth doesn’t hurt at all, so he just told me to monitor it. Also when I complained to him that these days foods taste too salty, too sweet, etc. He said that this is common and is a sign that my tastebuds are coming back and that they will eventually mellow out. Interesting huh?
The only appointment that shook me up was with my nutritionist who told me that I have high cholesterol, high triglycerides and osteoporosis. Here are my current lipid levels (taken after fasting…so it’s probably even higher usually) and my levels pre-transplant (not fasting – so it was probably lower) with the normal range in parenthesis:
Cholesterol: 2/9/09: 288 mg/dL 10/15/08: 201 mg/dL (normal: below 200 mg/dL)
Triglyceride: 2/9/09: 563 mg/dL 10/15/08: 199 mg/dL (normal: below 150 mg/dL)
I’m in the high risk category!! My nutritionist reassured me that it’s the medication (cyclosporine) that is causing these increases. Nothing in my current diet could have caused such huge jumps in my levels. Now I have to load up on cold water fish (high in omega 3), fiber (it helps flush out fats), and more fruits and veggies (5 servings a day).
What I was most freaked out about was the Osteoporosis. When I think of osteoporosis I picture older women simply walking down the street, all of a sudden falling down and fracturing their hip bone. Scary! They did a bone density scan aka DEXA and found that there are certain areas in my body that was in the osteoporosis range or close to it (aka “osteopenia”). I don’t know what my bone density was prior to transplant, but I’m sure the radiation, chemo and meds have done a bit of damage to my bones. Fortunately I learned that women continue to grow bone density until they are 35. Soooo I have some time to repair my bones. Ladies, please load up on your calcium, vitamin D and get more exercise!!!!
Again another post that is probably too much info, but I figure this might be helpful to my fellow transplant patients.
19 responses so far ↓
1 Valerie // Feb 17, 2009 at 11:23 pm
yay michelle, thats such exciting news!!!!!! btw my doctor also just told me about the bone density thing so i started taking viactiv chews again which reminded me of our days at gap! congrats again with the good test results. xoxo
2 Steve // Feb 18, 2009 at 1:14 am
Great to hear your test results are (mostly) good. Can’t wait to have you back!
3 Fill // Feb 18, 2009 at 1:17 am
good hear the good news, and glad the updates are still coming. keep it up!
4 Young // Feb 18, 2009 at 11:07 am
Sounds like a lot of great news!! Must be such a relief to hear all these things. You’ve come such a looong way. I don’t know if I could do what you’ve been doing. You’re a trooper.
5 carol // Feb 18, 2009 at 5:16 pm
yay!!!!
so great to hear of the ‘clears’ and ‘negatives’… was worried when the site was down but so glad to hear that you’re doing well. 
still praying for you all!
6 Samantha MacRae // Feb 18, 2009 at 5:17 pm
Love that pic. “V” is for VICTORY!!
Sam xx
7 Linh // Feb 18, 2009 at 10:09 pm
yup! vit d helps calcium absorption. high impact exercises help also, although i personally HATE running. hope you’re enjoying some seattle sunshine michelle!
8 Molasses Minds // Feb 19, 2009 at 7:45 am
Just wanted to say I am sooo happy your recovery is progressing well. I don’t know why but ever since I learned about your illness and transplant, it’s been incredible important to me that you pull through this. I read your blog a few times a week to see how you are doing. I got very worried when I couldn’t access it during the technical difficulties. So, even though you don’t know me, I am thinking good thoughts for you and sending positive energy your way. In a year, you will look back on this and say “it was a piece of cake.” YOU GO GIRL!!!
9 Edgar Collins // Feb 19, 2009 at 12:57 pm
Spring is coming. With all the rain here in the Bay area, the flowers will bloom eary. “WELCOME HOME”…smile.
Love,
Edgar and Nancy
10 Ann Gregory // Feb 19, 2009 at 1:29 pm
So happy to hear all is well and that you can stop IV meds! With my first transplant I was in a study that monitored bone density. I had to take 2000 iu of vitamin D and I forget how much calcium daily as well as Actonel. I had a bone density scan right before my CBT and was told that I had gained significant bone density. To this day the PA’s who do my bone marrow biopsies complain about how hard my bones are.
Maybe your doc would consider putting you on something like Actonel or Fosamax? Just a thought. Keep on kicking cancer butt! Just think, home is so much closer. 
11 PM Reader // Feb 19, 2009 at 6:02 pm
wonderful news!!
fyi – the lipid and cholesterol levels do not fluctuate like glucose in the blood does (daily). It actually takes several weeks for cholesterol to decrease/increase. As you said- your meds probably facilitated the accumulation of all the bad cholesterol and triglycerides.
BUT- there’s definitely ways to get the levels back to normal.
Rock on Michelle!
12 Christian // Feb 19, 2009 at 10:19 pm
stay strong and awesome Michelle!
13 Carol // Feb 19, 2009 at 11:12 pm
Hope you had a happy Valentine’s Day las weekend! Never too much info. I love your posts!
So happy for you! Keep it up and I’m sure the numbers will fall into place soon enough. Good to know about the bone density building up until you are 35. I always thought it was 25 and thought my bone building days were numbered. I think I might have me a glass of milk in a bit…
14 Jen // Feb 20, 2009 at 5:42 am
I lost my grandmother in ‘99 to breast cancer, and your blog is so important to me. I’m just a kid, but still am amazed at all that you have to do. You are really a huge trooper. I completely freaked when the site went down, because it said that it was a private blog and I didn’t want to be left out.
Standing behind you 1472754%,
Jen
15 Floyd Crame // Feb 20, 2009 at 7:37 am
Great picture. Symbolizes “V” for victory! Hurry home.
16 Anuj // Feb 20, 2009 at 7:48 am
not much of this would make a whole lot of sense without the detail – so it’s never too much info. take it away, and you may have to repeat your BK and GVHD stories to dozens of us.
17 AMP // Feb 20, 2009 at 3:45 pm
I can’t believe this day has finally come! This has definitely been a journey. Can’t wait to welcome you back home. Home SWEET home. =) Love ya!
18 sih // Feb 21, 2009 at 1:16 pm
One of my best friends got a bone marrow transplant on Sept 18th last year and has been recovering since. She doesn’t have leukemia, but your blog has been such a wonderful resource and source of support for me. She’s been through a lot of ups and downs, and it’s been reassuring to me to see that you are going through similar things and yet staying so vibrant and positive.
I’m so glad that you’ve gotten such good test results and that you’re on your way home! Thank you for sharing the info about osteoporosis. My friend is at high risk for developing it and it was good to find more information about it.
Thanks for all you share and for reminding me that my friend is not alone.
19 Dave C // Feb 22, 2009 at 4:34 pm
That’s great news to hear! Stay strong!
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