2008-June 29-first chemo treatment in Seattle

I had my first dose of chemo down in Seattle Friday. I felt completely fine afterwards-no nausea, just very tired these past couple days. It was pushed in with two syringes that only took about 10 minutes. One is called Mechlorethamine/Nitrogen Mustard & the other one is Vincristine. I ended up being there about 4 hours because I have to be hooked up to IV fluids before, during & after this type of chemo. I found out that day I’m also taking a pill form of chemo everyday for 2 weeks. And I’m also taking a higher dose of prednisone as part of this regimen. I’ve always taken the prednisone as a steroid for the pain, but from what I understand it can be used for this type of chemo treatment too. And now I have prednisone induced diabetes & have to take insulin shots daily. I also have high blood pressure & am taking medication for that. I can’t remember what medication caused that. I guess one medication will take care of one problem, but then there are side affects to that, so then I have to take another medication to counter that & so on & so forth. I counted up how many pills I’m taking a day right now. 22! Drugs. Drugs. Drugs. They prevent anything from pneumonia, shingles, liver toxicity, fungal infections, etc. etc.

The rash, dry skin, blisters & itching on my stomach is waaay better. The blisters have popped & stopped weeping, so it’s not such a mess to deal with anymore. It doesn’t look very pretty, but it’s finally healing.

As of right now tomorrow I have a blood draw, meet with my nurse, pharmacist & doctors. I think I’ll be getting the results from an ultrasound I had Friday after chemo. Something showed up on the PET/CAT scan next to my thyroid they wanted to check out. Wednesday I have a blood draw & Friday blood draw & chemo. Maybe if we stay late enough on the 4th we can watch the fireworks over Lake Union from the 6th floor of the Seattle Cancer Care Alliance. =)

2008-June-my view of Lake Union from the 6th floor of the Seattle Cancer Care Alliance

2008-June 26-Tricia possibly not donor & transplant pushed back

I met with my doctors Monday & got the results of the PET/CAT scan. The cancer did shrink from my last chemo treatment about 3 weeks ago, but it has already grown back very quickly. They didn’t know if they were going to be able to use Tricia as my donor anymore. They have a weekly meeting with all the doctors & experts on Wednesday mornings & were going to bring up my case to figure out what would be the best for me. There was a possibility my mom or Nathan would be my donor instead. My mom is a 50 % match & they would have had to finish the more extensive testing on Nathan’s blood to figure out if he would have worked. I don’t understand either why Tricia’s 100 % match wouldn’t be better than a 50 % match. It had to do with fighting the cancer a different way-something about fighting it with KIR instead of HLA. I don’t even know how to explain that one.

As of yesterday Tricia is still going to be my donor, but my transplant is going to be pushed back at least a month. I need more chemo first to push the cancer back down. They’re using something called MOP that was used back in the 70s or something. It isn’t used that often anymore, but it’s apparently what’s going to work best for me to continue forward with the transplant. I start tomorrow & have a second treatment next Friday, on the 4th. Then I’ll have another PET scan done & they’ll reassess after that. Seattle Cancer Care Alliance (SCCA) is possibly wanting me to stay down in Seattle this whole next month, which is very frustrating to me. It is very difficult to mentally prepare for things when things keep changing by the minute. I want to be home until the transplant!!!

There was a fiasco with the Lovenox (the blood thinner shot). I apparently misunderstood the amount I was supposed to be taking & was overdosing on it. I got the usual bruising, itching & blisters, but I was bleeding more & got an extra bad case of blisters on my stomach that still are weeping all over & making a mess. A couple nights ago the itching was so bad I couldn’t sleep & felt like I was being tortured. Fun times. I am now on Warfarin (the pill form of blood thinner). Thank goodness. That’s actually not that good, but it’s the only choice right now. Warfarin takes longer to get in & out of your system than Lovenox. But they’re worried about the blisters getting infected & messing things up with the transplant date even more. So, until something happens in the next minute & changes everything again…this is the latest. =)

2008-June 22-blood clot again

Last week was another busy week of testing & appointments. Monday I had a dental exam, met with a nutritionist, had an orientation with a nurse, met with a social worker & filled out self assessment information on how I’m feeling. Tuesday I met with a pharmacist, met with my team of doctors, went to a food safety class & a class on managing care at home, had my blood drawn & had my central Picc line dressing changed. Wednesday I had a gynecology appointment, a muga test done on my heart & met with someone from the infectious disease department. Friday I had a PET/CAT scan done & my blood drawn. They are definitely checking me out from head to toe.

Mom & I came home Wednesday night & dad went back down to Seattle with me Friday for part of the day. I received a phone call from the Seattle Cancer Care Alliance (SCCA) about 5:00 pm Friday evening, after we were already home, with some bad news. They had part of my results back from the PET/CAT scan & I have a blood clot again. It’s in my superior vena cava again-the main vain. They started me on Lovenox blood thinner shots again. I have to do two shots in my stomach every 12 hours just like last year. I hate doing those shots. It makes a mess of your stomach with bruises, itching & dry skin.

Thursday the cancer lumps starting hurting pretty bad. When I went in Friday I talked to my nurse & one my doctors about it. They had just gotten me off the prednisone (steroid that is an anti inflammatory) a few days before, but put me back on it-60 mg per day. I had been down to 5mg every other day. I meet with my team of doctors & nurses tomorrow to get the rest of the results of the PET/CAT scan.

2008-June 15-first week of testing

Tricia flew in Tuesday night from Chicago. Wednesday we had our blood drawn, physicals & went over our medical history. Thursday we had chest x-rays, an EKG & met with our doctor. I received some good news. I supposedly am not going to lose my hair again like I thought I was going to. Woo hoo! I also met with someone from the financial department & had a pulmonary function test done, which is a breathing test. And Tricia met with a social worker. Dad, Nathan & Valerie came down to the Northgate apartment that night & had dinner with us, so they could have some time to visit with Tricia. Friday I had a dental x-ray done, my blood drawn & a bone marrow procedure done. I didn’t end up being put under like I had wanted to. They put me under heavy sedation instead of local anesthesia. I didn’t really feel like I was sedated though. I was pretty wide awake. Even though it went better than the one I had two years ago in Mt. Vernon it still was painful. They cored into my bone 4 times to get samples. I guess I’m going to have to do that two more times in a couple months. Tricia got her test results Friday afternoon & everything looked good. The only thing was she’s low on potassium & needs to bring that up. She left Friday night. My uncle is a pilot for United Airlines. He called Tricia & told her he was “concerned for her safety”, so picked up the flight from Seattle to Chicago & was her pilot. Pretty cool. Mom & I are headed back down to Seattle here shortly to get settled in for more testing & appointments this week.

2008-June 10-MRI & testing starts tomorrow

I recently had a follow up appointment with my radiation doctor. I brought up the pain in my shoulders again that I’ve had since I was done with radiation. He wanted me to do an MRI & check it out before I headed to Seattle. It came back clear, so I guess I’ll just let Seattle Cancer Care Alliance (SCCA) figure it out since I start my testing down there tomorrow. I had my last maintenance chemo treatment here in Mt. Vernon last week. For the next 1 ½-2 ½ weeks of testing we’ll be living at the Northgate apartment during the week & then home on the weekends.