Wednesday, February 25, 2009

Everything is looking good

I went to all of my appointments this week, and so far so good. Jay just called me to let me know that my bone marrow biopsy results had come in and my cancer is still in remission. So as far as I know all of the dates still stand for next month. Next Thursday when I get back from Florida I have to go back to the hospital and get fitted for radiation, and now I also have to get a spinal tap done for the clinical trial (that we are still not certain that I will be having due to the donors hospital not submitting the paperwork)… Yesterday I was notified that my prescriptions are going to run a minimum of $1,200.00 dollars per month post transplant. I hope my insurance covers most of that??

I had my latest bone marrow biopsy done on the bone marrow transplant floor, and they gave me conscious sedation. I thought that would be really great because my last few that I’ve had done I was not given so much as an Ativan. WRONG… The woman who did the biopsy first off started to do it on my left side (I am already having major problems in my right hip, and I didn’t want the same issues in my left hip) so my husband spoke up and told her that she needed to do the biopsy on the other side. Then she went in for the marrow and piece of bone, and she pulled it out, but then for some reason she went back in, now I was out of it for the most part but I remember this. Rick said it looked like she went all the way through my hip. He yelled out WHAT THE F**&? And everybody stopped what they were doing and looked at him. He asked her what had just happened? And she said, that either she got into the marrow, or the needle slid off of the bone. All I know is I can’t sleep because it hurts so bad. We went out for lunch afterwards and he had to help me out of my seat because I couldn’t stand up, and now I walk with a terrible limp. She will never do my bone marrow biopsy again EVER!! Oh, and by the way she pulled out two slivers of bone on the last attempt, and then threw them away!!!

Completely off of the subject… but why do people feel that it’s completely necessary to let you know that they too knew someone with the same kind of cancer that you have, just to tell you that they died?? That happened yet again to me today, I went for an eye exam and the optometrist asked me what kind of cancer that I had, I told him that I had Leukemia, he said, “Oh, my father had leukemia, what kind do you have?” I told him AML, he said, “That is the same kind that my dad had.” I just looked at him because I knew what was coming next. He said, “My father was much older than you are, I’m sure you’ll do fine with the chemotherapy.” UGGH!!!

I am pretty excited about my trip to Florida, although if I had thought about it for a little bit longer I probably would not be going. I’m going to miss my family, and then turn around and be back in the hospital for at least another month. This is the first trip I have EVER taken in my life by myself. I have to admit it’s a little weird. Ange is taking me down to Key Largo for a couple of days for some R&R, I have to admit I’m really looking forward to that.

Ricky is already getting really clingy, but he will be alright. Rick is starting to have issues with the transplant, we talked today and we are going to sit down before I go into the hospital and discuss all of the What if’s? that is always a tough talk but it’s best to have everything out of the way.


Anonymous said...

Hi, I don't know you and I'm not sure of your whole story but I did want to let you know that my mom had AML. And she did not die of leukemia!! She, like you, has hip problems and had a hip replacement three years ago.

My mom was diagnosed in August of 97' at the age of 42, had a bone marrow transplant in December of 97' and has been, thankfully, in remission ever since.

As I mentioned above, she does have some lingering effects from the chemo etc. but she is alive and has seen her children grow up and even witness the birth of her two grandchildren.

She is an inspiration to many and I hope that you, like her, never give up hope!

-Amy in Pa

hockeychic said...

Hope you have a wonderful trip to Florida and soak up that sunshine. Thinking of you and wishing you well. Great news that you are still in remission.

Anonymous said...

I also do not know you, but found you because you were a link on a friend's blog, and I've been following your story ever since. I want to give you a tip re. the financial side - my Mom had a stroke many years ago, and the hospitals/doctors will often accept whatever the insurance pays so you don't have to worry as much about the money (you don't always have to pay the balance). Also, they can't deny treatment because of payment issues, so although I know finances are a worry, I found that in the end, I could get my Mom the care she needed and worry about/deal with the finances later. And, pharmaceutical companies often work with patients as well, and will lower prices if need be.

I think it's great you're going to Florida, you need the break and it will refresh you for the challenges ahead.

I am sending you all the positive energy/prayers, etc. I can, and I'm sure many, many others are, too.

Good luck, enjoy Florida, I look forward to hearing about your recovery in the months and years ahead!

Anonymous said...

April, just wanted to say Hi and that you Rick and the kids are always in my thoughts and prays. As for postive feedback on your condition. I was talking to a friend's sister who works at the Karmanos Cancer institute and she told me your she felt the outlook was good. Unfortunately it's a long recovery process.

Love all of you. Hang in there.