Thursday, April 29, 2010

Big thanks for all the prayers that were sent up for me tonight! By the sound of it God had a lot of people to listen to. I feel so very blessed by each and every one of you. When I was diagnosed in January of 2009 I was blown away by the immediate support I received. Knowing it would be a long road I thought that support would wain over time. Now it's been an even a longer road than originally anticipated and all of you (and probably even more) are still right here with me. For that I am so very grateful.

Love and thanks to all,

Tuesday, April 27, 2010

The clinic visit today went well. Our plan is to try another clinical trial for a new drug which will start sometime in May. The new drug is conceptually similar to STA-9090 but a little different. In the meantime I will finish up one more week of STA-9090. Dr. Rizzieri thinks that although my counts are rising, the drug still may be keeping the Leukemia from going out of control. After this week, we will keep my counts down with the drug Hydrea until the new trial starts. This will be my third clinical trial so as they say maybe "third time's a charm."


Friday, April 23, 2010

I hate having negative posts but unfortunately this will probably be one of them. We did not get very good news today at the clinic. My white count increased by another point and the percentage of blasts in my blood went up to 68%. (It had been consistently staying around 50%). So it looks like the STA-9090 is no longer working on my Leukemia.

Dr. Rizzieri came and talked to us for a while and decided to go ahead and give me my treatment today and recheck everything again on Tuesday. In the meantime, he will be looking into other options for treatment. He said there is another trial opening up in May for a drug that is theoretically similar to STA-9090 but different. That may be one option for me. They plan on putting me on the medicine Hydrea to keep my white count down until we have a plan set into motion.

In spite of this, I'm still feeling really well and I'm also thankful that I have a doctor who will keep trying and keep coming up with plans even if the end result is just prolonging my life.

I have to end on a positive note: Peanut Butter Pie from TGIFridays!!!

Bon Appetit,

Tuesday, April 20, 2010

Well Mom and I just finished watching the movie Julie & Julia and I'm sorry that I don't have more exciting things to blog about. However, if I were to try to cook my way through Julia Child's cookbook it probably would be quite interesting for very different reasons than in the movie (I cannot cook. Bake, yes. But cook, no.)

I went to clinic today and had my usual treatment plus received a unit of platelets. My hemoglobin was still high from the infusion on Friday so no red blood cells today. I can definitely tell if my hemoglobin is low/high as it corresponds with how much energy I have. However, my white count took a big jump to 6.5 (it had been staying around 3.5-4.5) so this is worrisome to me. The PA I see in clinic is basically there to treat the symptoms and not the big picture so he didn't really have much insight into this jump. He did however say that he would discuss it with Dr. Rizzieri and my "main PA" Therese this afternoon. So hopefully we'll know more Friday. Dr. Rizzieri did say one time that a white blood count at or below 7 would satisfy him, but I still don't like the big jump.

I did come across one good thing today though: Reese Cup Milkshakes from The Cookout. After having one I no longer think I will be satisfied with a Reese Cup blizzard from Dairy Queen. Just wanted to end on a positive note,

Much thanks to you all, Amy :)

Friday, April 16, 2010

Things are still status quo which is good. I had my usual treatment today as well as infusions of red blood cells and platelets. My hemoglobin was low but not at transfusion level so the PA left it up to me as to whether to get the unit of red blood cells so I said bring it on because a transfusion always gives me more energy.

Last night I had some muscle spasms in my right rib area. This is where some of my shingles were located back in December. The PA thinks this is just a result of damage done to the nerve endings by the shingles. So it could creep up at any time and we just have to try to treat it with pain medication and muscle relaxers. Overall, I'm still feeling really good which is a lot to be thankful for!

Have a good weekend, Amy

Tuesday, April 13, 2010

Hi everyone! I got the usual treatment today plus infusions of platelets and red blood cells. We got the bone marrow biopsy results and are a little disappointed that the percentage of Leukemia cells had gone up a bit. It was not an outrageous percentage though so let's just hope and pray that having two treatments a week will really beat down the leukemia.

I'm still taking Cipro as my antibiotic but it has not bothered me like it did before. The treatments give me some stomach aches the day or two afterward (mostly in the mornings) but other than that I am fortunate to really feel good.

I wish you all a good rest of the week! Amy

Monday, April 12, 2010

Quick Note: If you are free there is a blood drive at the Clifton Forge Moose from 11:00 - 5:00 tomorrow (Tues. 4/13)

Saturday, April 10, 2010

Hi everyone! I got a treatment yesterday, this is the first time I've had two treatments in one week. Other than some stomach aches this morning things are going well. My hemoglobin was pretty low yesterday but not low enough for a transfusion. I wish they had given me red blood cells because my hemoglobin will probably drop really low by Tuesday. Hopefully this won't make me too tired. We should have some results from the bone marrow biopsy sometime this week. This always makes me nervous.

Hope everyone has a great weekend!

Tuesday, April 6, 2010

Well today has been a busy day. I got to the clinic and they informed me I had to go to Duke South to have a chest x-ray and EKG. So I had blood drawn and we headed over there. After getting back to the clinic I had a bone marrow biopsy... not too bad. Now I am getting a unit of platelets, some potassium, two units of red blood cells and a treatment. So I am keeping the nurses busy. The last two days I have been completely drained of energy so I was glad when they told me my hemoglobin and hematocrit were low. This means there was at least a reason for my tiredness and it wasn't just something "normal". I should feel much better after getting the red blood cells. I'm going back on Cipro for an antibiotic, I didn't feel great on this drug, but at least I didn't have the nausea/vomiting like the last two antibiotics. So hopefully this will be somewhat better.

Today's treatment starts my twice a week protocol so I will have another treatment on Friday. (We usually came on Tuesdays and Fridays anyway). I pray that the small side effects I have from 1 treatment a week continue to only be small side effects. Obviously we are also hoping twice a week treatments will have more of an affect on my Leukemia cells.

Michael and Matt are driving back from Indy today so wish them a safe trip. I think they had a great time. Matt did of course because Duke won and Michael being a UNC fan was just happy to be there.

Hope you all are having a wonderful week,

Sunday, April 4, 2010

I Just wanted to wish everyone a Happy Easter! We have so much to celebrate today and I hope you all have friends and family to celebrate with. I was too tired to make the trip to VA so I miss seeing a lot of my family but I'm glad to have mom and dad here with me.

I've felt good yesterday and today but the end of the week was kind of rocky. The antibiotics just really mess with my stomach and give me lots of nausea... so I stopped taking it. At first I followed everything the doctors told me to do, but after 14 months I've realized it's my body and I can make some decisions on my own - whether they're the right decisions or not. Hopefully they will find an antibiotic that will protect me but not make me feel so bad.

Hope everyone has a joyous day!