2008-July 27-started 2nd 28 day chemo regimen

Friday dad & I left Mt. Vernon at 9:30 a.m. for Seattle & didn’t get home till after 11:00 p.m. that night. Chemo started 1 ½ hours late. Then they changed my IV fluids running with the chemo from 3 to 4 hours. It was something to do with what showed up on my blood draw from the morning. My platelets showed up low again on the blood draw, so I had another platelet transfusion. We had to wait 2 hours after I was done with chemo before the platelets showed up from the Puget Sound Blood Center or something like that in downtown Seattle. It took 2 ½ hours for the transfusion. They had to keep stopping & give me Benadryl because I was getting a rash again. I was just told today that someone we know had a platelet transfusion down there & he quit breathing, so that is a possibility that could happen to me too. That freaked me out.

Thursday night I woke up in the middle of the night with extreme pain where the cancer is. It was gone by the morning, but one of my doctors wants me to do an ultrasound to see if it’s something to do with the blood clot. She wanted it done Friday, but couldn’t get it scheduled in on such late notice. I think I’m supposed to have it tomorrow, but I haven’t heard yet.

I’m having the needle biopsy done at the University of Washington Medical Center next week to check out the deal on the nodules around my thyroid.

I did confirm that I cannot do a third 28 day chemo regimen. Thank goodness. I think it’s because it’s too hard on the body to do more-too much toxicity or something like that. So the transplant should take place sometime at the end of August or beginning of September. I think the only thing that could mess that up is if I get sick.

2008-July 24-transplant pushed back 2nd time

I met with one of my doctors yesterday & got the results of my PET/CT scan. The cancer is responding to the chemo & has shrunk. It always has though. The problem is it comes back so fast. He thought we could go either way-do another 28 day chemo regimen or go ahead with the transplant next week. He needed to consult with some expert though & get back to me. My nurse called me this morning with some very disappointing news. The transplant is on hold again & pushed back another month. They want me to do another 28 day chemo regimen. I am very upset about this as I just want to get on with my life. I know they’re doing what is best for me, but it still doesn’t make it any easier. I was hoping to get off the insulin for the temporary diabetes within the next week. As prednisone is part of the chemo regimen & is what caused the diabetes I will have to deal with that for at least another couple months. I don’t think they can do a third 28 day chemo regimen as that would be too hard on my body, but I don’t know that for sure. I’m assuming we’re looking at the beginning of September to do the transplant, which means I wouldn’t be back home till the beginning of December. I find out more details tomorrow.

Tuesday after I did my PET/CT scan I had to have a platelet transfusion because my platelet count was so low. There are many possible side affects as the body recognizes something foreign in it & I got a rash covering my whole body.

They want to do a needle biopsy on the nodules around my thyroid. They did not shrink from the chemo, so I’m assuming it’s not cancer, but I don’t know that for sure. I don’t know when that biopsy will be yet.

My lymphedema (swelling of the lymph nodes) is not getting any better. My left hand is still very swollen. The soonest Seattle Cancer Care Alliance can get me in for physical therapy is July 30.

This is all very wearing on me. I’m crying as I write this. I start chemo again tomorrow.

2008-July 9-second chemo treatment in Seattle

I did chemo on Friday, the 4th & felt fine again. At first they weren’t sure they were going to let me go through with it because my right hand was tingling like it was asleep & my left hand was swollen from the lymphedema (swelling of the lymph nodes). I had an ultrasound done on Monday & a CAT scan on Tuesday to make sure it’s just lymphedema & not the blood clot moving down my left arm. I think this lymphedema is something I’m going to have to deal with the rest of my life. It doesn’t seem like there’s much that can be done about it. I have compression sleeves I wear, but I don’t notice a difference. I think at some point Seattle Cancer Care Alliance will have me do physical therapy & massage therapy for it, but they haven’t scheduled anything so far.

My days stay pretty busy. I have a lot to do & keep track of. First thing when I get up I have to remember to take my temperature. Before I can eat breakfast, lunch & dinner I have to prick my finger & check my blood sugar level. I have a short acting type of insulin I take before meals & a long lasting type I take before bedtime. If the numbers are high I stab myself in the leg with insulin. Fun times. I have to write down everything I eat, measure it & count my carbs. At 9:00 a.m. I take 18 pills. At 10:00 a.m. I clean & flush my central Picc line. At noon I take another pill. At dinner I take 3 more pills. Before I go to bed I check my temperature & my blood sugar level & shoot up again. =)

The PET scan will be somewhere between July 21-24 to see if the chemo has suppressed the cancer enough. So by the end of that week I should know if I’m doing the transplant the following week or if I have to do another 28 day regimen.

I forgot to mention in my last update the hair situation has changed. The chemo I just did will supposedly make my hair fall out again or possibly just thin. I check it everyday & nothing has come out so far.

I also forgot to mention some nodules showed up on or around my thyroid. They don’t know if it’s cancer yet or not. If the results of the PET scan show they’ve shrunk then it’s cancer, but if they don’t change then apparently it won’t be anything to worry about.

Right now I have appointments at least every other day at the Seattle Cancer Care Alliance-blood draws every other day, weekly Picc line dressing changes, a weekly meeting with my doctors & a weekly meeting with the nutritionist to stay on top my insulin dosage. I don’t have anything tomorrow, so I get a day off. Yea!