Monday, November 30, 2009

Good Afternoon! So we have a little bit more of a plan than we did last week but a lot of things are still up in the air. The medical plan is for me to have a big round of chemo. This is actually part of a clinical trial. The chemotherapy drugs are common but they will be put into fats (lipids) before they are injected into me through IV. This is supposed to help them be delivered more directly to the bone marrow. Then we will wait and see how my cells grow back - the hope is the donor cells will be the ones that take over and grow back however there is a chance that my cells will be the ones that grow back. In that case we'll have to go on to some other types of treatment.

I will probably start this round of chemo sometime next week. This will be inpatient chemo and I will be in the 9200 wing of Duke Hospital. I really like this unit and the nurses on it so this does not bother me at all. We will find out more on Thursday about the exact day I will go in the hospital, whether I will have another central line or not, and an estimate of the length of my hospital stay.

Here is an article Cecille McDowell sent me about a woman who had a stem cell transplant. Her situation seems freakishly like mine to this point (down to watching TV shows on DVD while in the hospital). It is a good read if you are interested.

Hope all had a nice Thanksgiving and have a wonderful week,

Wednesday, November 25, 2009

Well we received some bad news today: the leukemia is back. However, it is very very early and the immature cells have not even started to come out into my blood yet, they just found leukemia cells in the bone marrow. The next step is that they are going to contact my original donor and ask if he can make another donation of cells. If so, they will give me a round of chemo and then transplant more of his cells. This will act sort of as a booster to the stem cell transplant. Due to the early stage of the leukemia, Dr. Rizzieri is not in a big rush to get started. Michael and I will decide whether to go ahead with the treatment in the next week or so or wait until after Christmas while watching the leukemia closely. In smaller news I also have shingles.

We were disappointed by the news but at the same time, just like in February, we know what's wrong and all we can do is try to fix it. In GOOD news, we got the LAST turkey at Whole Foods today so I think it was meant that that turkey happened to be left for us.

Please keep us in your thoughts and prayers, much thanks, Amy

Tuesday, November 24, 2009

So the last two days have not been the best. Yesterday, my blood work showed that all of my counts had dropped (platelets, red blood cells, and white blood cells). I had to go back today for a bone marrow biopsy to try to figure out what is going on and to get some red blood cells. After waiting on the type and screen process it took them about two hours to get the blood to the clinic so today was a long day. The results of the bone marrow will probably be delayed because of Thanksgiving but we are just going to enjoy the week and not think about it.

I also have been having some pain in a strip starting at the middle of my ribs, going around my side and to the middle of my back. I automatically thought of shingles because of the shape of the area that is painful. Tonight a few little red spots have popped up in that area so in my non-M.D. opinion I probably have shingles. I had them when I was 16 but I lost my immunity to them with the transplant. Shingles are very common in post transplant patients. I will go to the clinic in the morning to let them check it out. This may sound crazy but it was a relief to me to see the little bit of rash because shingles is something we can deal with and I was starting to worry that the pain was caused by something more serious.

I also have more blood work Friday morning so unfortunately we will not make it to VA for Thanksgiving. Mom and Dad are coming here for Thanksgiving but I still miss getting to see everyone else.

Much thanks for your love, prayers and good wishes!

Wednesday, November 18, 2009

Good evening, I had a doctors appointment today. My blood work is still the same: platelets are still low. They really did not expect anything to change in two days. My blood pressure was low both Monday and Wednesday so I get to stop taking my blood pressure medicine (the immune suppressant tends to raise blood pressure). My potassium level was also very good so I only have to take 1 potassium pill a day instead of 2. Finally, the BIG NEWS is that they also cut my immune suppressant in half as well. I now only take 2 immune suppressant pills a day instead of 4. This is a sensitive process and the hope is that my body won't start attacking the donor cells. However, I am very hopeful that I will not have any problems. In total they cut out 4 pills today and had already cut 3 last week. So the number of pills I'm having to take daily is decreasing which is always good from my point of view. At some points after the transplant I took about 30 pills a day! In other good news my pesky magnesium was all the way up to 1.7 (normal is 1.8). I go back for more blood work on Monday.

I can't believe Thanksgiving is a week away and this holiday means more to me than it ever has before. I started making a list of people I was thankful for the other day (remember I'm bored) and I had 2 1/2 pages of names just off the top of my head. So just let me say I am thankful for you all and hope each of you has a Happy Thanksgiving.


Monday, November 16, 2009

I thought I would post a quick update about my blood work this morning. My platelets dropped a little more but didn't drop as much as the last few times. Again, they think this is caused by medication and said that the medication I stopped taking would take a few weeks to get out of my system. So no worries at this point. I actually see Dr. Rizzieri on Wednesday so there may be more news then.

Michael is off to the Duke basketball game tonight (thanks to Tammy for getting the tickets). Hope you all have a wonderful week.


Tuesday, November 10, 2009

Hello Everyone! I had more blood work yesterday and my platelets dropped a little more. They really think this is medication related so they took me off of my anti-viral and my antibiotic. Michael remembers one time before that they lowered my dose of the anti-viral because my platelets dropped. I didn't remember this but it makes me feel better that the anti-viral medication could definitely be the cause (which would mean my platelets dropping is no big deal).

We are back in Durham until Thanksgiving for Michael to work. I will have more blood work next Monday as well.

Much thanks!

Friday, November 6, 2009

Happy Friday! I can't believe it is already November - I remember telling Dr. Densmore in February that as long as I was feeling better by the world series I would be happy. Well the world series has just finished and I've been feeling good for a long time. Michael is better and came back to VA yesterday. In unfortunate news, Michael's grandmother passed away yesterday so we will stay for the weekend for her funeral.

My blood work Wednesday was pretty good. My platelets did take a drop but they say it's normal for them to fluctuate and not to worry about it. However they want to watch them a little more closely so I will go back for more blood work on Monday.

Hope you all have a splendid weekend, Amy