2008-May 29-testing starts & transplant date set

I had a phone conference with Seattle Cancer Care Alliance (SCCA) today & I start the whole testing process for the transplant in less than 2 weeks. I wasn’t quite mentally prepared to hear that. Even though I would rather have the transplant sooner than later it was still kind of scary to hear everything’s finally starting. Tricia will fly out here Tuesday, June 10. June 11-13 we will have several tests done on us, meet with doctors, go over our medical history, have physicals done, EKG, chest x-ray, etc. etc. I have to have a bone marrow biopsy done that Friday, which I am absolutely being put out for. I will NEVER be awake for one of those again in my life! For the next week or two I will continue with testing-heart test, lung test, dental checkup, meet with a nutritionist, pharmacist, social worker, have a PET scan done, go to various classes, etc. etc. As of right now the transplant is scheduled for Tuesday, July 8. I will have a Hickman catheter put in my chest July 2. Tricia will fly back here July 3 & take neupogen shots for 5 days to produce white blood cells & have her blood checked each day at SCCA. I will have hard core chemo July 4, 5 & 6 to wipe out my immune system again. July 8 I will have total body radiation in the morning & in the afternoon Tricia’s cells will be collected & the transplant will be done. I will be in Seattle for the next 3-4 months.

2008-May 25-problems flushing Picc & my donor

Tuesday I went in to have my blood drawn & checked & have the dressing changed on my central Picc line. My platelets are still low, but my doctor thinks they should be back up by this Tuesday. I’m scheduled for chemo at 8:40 am. Tuesday night I started having problems cleaning & flushing my Picc line. I couldn’t get the heparin to go into either line. I had to use both hands to push the syringe as hard as I could. I was afraid I was going to blow it apart. Wednesday morning I went into oncology & they gave me some medicine that breaks up blood clots. I had this stuff injected into me 3 times over the next three days, but was still having a lot of resistance. They were talking about running this medicine through a 2 hour IV or having dye injected into my veins to see where the clot was. Finally on Friday after taking a closer look at everything they found a kink in the tubing that was causing the problem- no clot. When my dressing was changed the tubing was laid funny & ended up kinking. What a fiasco. Everything’s back to normal now. =)

Friday afternoon I called the Seattle Cancer Care Alliance (SCCA) & they are finished with their more extensive testing of Tricia’s blood. She is a 100 % match & will be my donor. Apparently they finished up their testing on Monday. I wish someone would have contacted me, so I could have gotten things lined up already for the next step. I’ll find out all the details & results of SCCA’s testing & what the next step is on Tuesday when I meet with Dr. Raish.

2008-May 17-platelets low & tentative match

My platelets were low on Tuesday, so I was only able to have 1 of my 3 chemo drugs. Instead of 2 hours of chemo I only did 30 minutes, but I was still there about 4 hours. Because of my platelets I had to have my blood drawn & checked today & next Tuesday. I have next week off for chemo & then I’ll do 2 weeks again. I called the Seattle Cancer Care Alliance yesterday & Tricia is my tentative match with the testing they’ve done so far. They are testing something called antigens. A perfect match is 10 out of 10 & so far we match 4 for 4. They said Bradley & Nathan are only 50 % matches. They have more extensive testing to do on Tricia’s blood & thought they would have that completed by next week Friday & will then get that information to Dr. Raish.

2008-May 9-central Picc line in & started chemo

I finally got my central Picc line put in Monday. Tuesday I did my 2 hours of chemo. It only took 5 ½ hours. =) I haven’t felt the greatest this week. My prednisone (steroid for inflammation) dosage was cut back & the pain came back on both sides of my neck. I’ve been waking up early in the morning with pain & yesterday was feeling pressure on my forehead & face. I was worried the pressure might be the start of a blood clot again, so the Cancer Care Center had me come in first thing this morning. Dr. Raish immediately had me go over to the hospital to have an x-ray & ultrasound done. I’ve had some new pain on the left side of my ribs so the x-ray was to check on that & for fluid in my lungs & pneumonia. That came back clear. They did an ultrasound on my neck & arm to check for blood clots. That also came back clear. Dr. Raish started me on coumadin (blood thinner) just to be safe to prevent a blood clot. He also upped my prednisone dosage back up, so hopefully by tomorrow I’ll be back to no pain. I have chemo again on Tuesday morning.

2008-May 2-no central Picc line or chemo today

I was supposed to have a central Picc line put in this morning & start chemo this afternoon & neither one happened. It was a frustrating day. IV Therapy had major complications putting the line in. They tried 5 times. I was there 2 ½ hours instead of 45 minutes. The veins looked okay on the ultrasound, but there was apparently blockage & they couldn’t get in. The kind of chemo I’m getting cannot be put directly into the vein. It would cause serious irritation, pain, leakage to tissue, among other bad things. I am rescheduled to start chemo Tuesday. Monday I go back to diagnostics to the cath lab to have dye injected into my veins. This will show where there is blockage & then they will put the line in then. I was pretty frustrated this morning, but I just had to let it go & I’m over it now. Apparently I was not meant to start chemo today. I know everything in life happens for a reason. =)

While I was in Chicago I received a phone call from the Skagit Valley Cancer Care Center that the Seattle Cancer Care Alliance (SCCA) was calling asking where my blood was. I had no idea what they were talking about. Apparently I was supposed to get my blood drawn also along with my siblings. No one ever told me that-neither of my oncology doctors, the SCCA or the person at the lab where I get my blood drawn. I’ve had my blood drawn a million times & figured they would get all the information they needed from those. So I went in Wednesday & had that done. I asked the person in the lab if she knew I was supposed to get that done & she said yes. Then I asked her if she was wondering why I didn’t get it done last Monday when I was there with my brothers getting theirs drawn & she said yes again. I don’t understand why she didn’t say anything to me. I was pretty irritated about this as this pushes us back another week & a half. But again, I’m over it. Life goes on. =)

On a happy note…I had an awesome time in Chicago! I absolutely needed a break from the insurance company, the SCCA, phone calls about this & that & the next thing & a break from cancer. =) Except for that one phone call I had peace & quiet. It was very relaxing.