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.

Tuesday, February 17, 2009

Finally some dates to post...

Well I’m just going to give a quick update today. I guess the ball has finally started to roll… I finally got my appointment times set up to make sure that I’m ready for this transplant. I go into the hospital tomorrow morning for a whole battery of tests; Pulmonary Function Test, Chest X-Ray, EKG, Cat Scan, and Lab work, also I have to meet with the BMT Nurse Coordinator. Then on the 23rd I meet with the Dr. Sricastava (do not ask me how to pronounce) she is the doctor that will be heading up my transplant, and I will have yet another Bone Marrow Biopsy that day. Then on the 24th I’m scheduled for a BMT Education Class.

Jay the Nurse Coordinator stated that as of right now they have me scheduled to be admitted into the hospital on March 9th, for 10 days of chemo and radiation. Then on March 19th is my scheduled day for the transplant. All of that depends on the outcome of my tests, and the status of my lung condition, but as of now that’s the plan. He also stated that the clinical trial is not a go just yet, because the donor is not interested in doing it, but they are still trying to talk the person into doing it. I told Rick when I signed the paperwork for the clinical trial if it’s meant to be it will all work out in the end, if not then I’ll take the regular transplant. So I’m not really stressing out about that one.

I spoke with Ange (my best friend who lives in FL) she wanted to come and spend some time with me before my transplant, but my husband told me that if I wanted to go to Florida to visit her that he would pay for my ticket. So we worked it out to where she and I are going to go half and half (since she was planning a trip out here) and I would just visit her. So she has already booked my flight, and I think we are going down to the Keys for a few days as well. I’m leaving on the 28th and will be back March 4th. Then five days later I’ll be checking into I.U. Medical Center. I kind of feel guilty about leaving Rick and the kids for five days especially since I could be in the hospital anywhere from 35 days to three months, but in the same sense I could really use some down time. Just time to relax, get a little sun, and have some fun. Because God knows I won’t be able to go ANYWHERE for a year. I won’t even be able to go grocery shopping (not that I’ll miss that too much)… So that’s it in a nutshell, I’ll update again when I get some test results in.

Tuesday, February 10, 2009

Still Waiting

Not too much has been going on this week still recuperating from chemo, and my most recent hospital stay. I called Jay from the BMT clinic and he stated that they will call me to set up my appointments for my pulmonary function test, my Cat-Scan and other tests. He stated that we were still a few weeks away from the bone marrow transplant.

I think that my appetite has finally returned I’ve gained two pounds a day for the past three days… I’m not even going to stress about it I know that I will lose a ton of weight when I go through the Bone Marrow Transplant.

I received two hospital bills last Saturday that totaled over $132,000.00. My three day stay with the collapsed lung cost me over $25,000.00, and my insurance still hasn’t paid anything on my first hospital stay so I received a nice letter from the hospital stating that if they did not pay anything in the next two weeks that I would be responsible for over $107,000.00 (for a 25 day stay). So now I have to deal with an insurance company (who is no longer my provider). I’m glad that I have nothing better to do than to deal with the insurance company…

I had my final interview with Social Security this week; I was approved for one year Thank God. It will be quite a lot less than I made at my job, but yet still a huge burden lifted. I was afraid that we would end up losing our house.

Now I just have to get Rick familiar with paying all of our bills, because quite honestly I’m not sure how much I’ll be able to do. Just regular Chemo makes it hard to keep up with bills, and household things I can’t imagine how things will be going through a Bone Marrow Transplant.

Rick and the kids like having me home for a change, they get a nice breakfast each morning. Before I was off from work we would sit down to the dinner table Saturday, Sunday, and Monday only, but now they get dinner practically every day. The laundry stays caught up through the week, I like staying at home. I’m going to dread going back to work. (Even though it’s going to be at LEAST a year before that happens).

I will officially be terminated from my job on March 8th and I have to say I’m not that upset about it. I’ve worked at that job for 10 years, and I know more about roaches, rats, mice, millipedes, centipedes, silverfish, termites, and bed bugs than I honestly ever wanted to know… Plus working in a building where they keep all of those pesticides really bothered me especially having AML (which has been linked to pesticides). Oh plus seeing all the people that I’ve worked with over the years fight cancers and brain tumors. We’ve had at least four other people with cancer, and one person with brain tumors. That’s just at a small location, and in my opinion that’s way more that a coincidence. So like I said I’m just not that upset about it. A little nervous about looking for a new job in a year or two and trying to explain why I haven’t worked/my medical issues??? I know that they legally cannot ask me about it, but still it’s going to be there. I’m the type of person who does not have anything to hide if you ask me a direct question; I’ll tell you the truth. I’ve got some time to think about it, so I’m not going to stress about it yet.