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.

2008-April 22-sibling's blood has been drawn

Bradley, Tricia & Nathan all had their blood drawn yesterday & sent overnight to the Seattle Cancer Care Alliance. After their 5-6 weeks of testing they will call Dr. Raish with the results. If none of them are a match my mom & dad will be tested next & we’ll wait another 5-6 weeks. When a match is found & I have a donor a date will be set for the transplant.

A distant relative is the one who got us started on the mangosteen juice after he heard my story. He was at a conference about it recently & told my story to a Detroit doctor who is researching the effects of xanthones (found in the mangosteen fruit) on different diseases. The doctor point blank told him I need to give the mangosteen juice another 30 days & he’s convinced I’ll see results. So I started drinking again on Saturday. =)

2008-April 15-good news for a change

I have some good news for a change. My mom, dad & I had a phone conference with the Regence Appeal Board yesterday regarding the 6 month waiting period they have for transplants. This was our second attempt at the appeal process. They called me back when they were finished with their meeting & they have waved the 6 month waiting period! I can finally move forward with the transplant process.

There’s more good news. I got the results of my PET scan last week Tuesday & the dozen spots on my lungs are gone! We don’t know how or what they were for sure. It could have been the mangosteen juice that took care of whatever it was or it could have been an infection or inflammation in the tissue caused by the radiation. Who knows. The two spots on the right side of my neck are still there & another one showed up just below them right above my collar bone.

Dr. Raish called Dr. Holmberg at the Seattle Cancer Care Alliance & gave her the information from my PET scan & they decided on what my next steps are & I met with him again on Friday. He wanted me to have a central Picc line put in my arm again & start chemo this week. But we’re going to hold off about two weeks till after I get back from Chicago. I won 2 free airline tickets at the company Christmas party & I made plans to visit my sister a couple months ago before I knew I had cancer again. I didn’t want to take any chances of complications with my central line or feeling sick from the chemo while I was in Chicago. I had one of those lines put in this past January when I ended up in the hospital & it was so painful & sore. I’m already in enough pain & didn’t want to add anymore. Dr. Raish is also concerned with having any kind of port a cath or catheter in me any longer than I need because I have a history of blood clots. I’m back on Prednisone again for the pain. It took a couple days to get the dosage right. So far it seems to be working.

As of right now I am scheduled to start chemo Friday, May 2. It will be about 3 hours once a week for two weeks, then 1 week off & 2 weeks back on. After that we’ll reassess. The first step in the transplant process is to have my siblings’ blood drawn & tested for HLA typing for a match at the Seattle Cancer Care Alliance. I believe that stands for human leukocyte antigen. I’ll let you google that if you really want to know what it’s all about. I don’t even understand it all myself. If none of them are a match my parents will be tested next for being a donor. The HLA typing takes about 5-6 weeks. The type of transplant I am having is called a bone marrow transplant or allogeneic transplant. Graft-versus-host disease (GVHD) is a side effect from this type of transplant. Cells from my donor’s bone marrow (called the graft) will attack my body, the transplant patient (called the host). GVHD can range from mild to life-threatening. From what I understand they want me to have a mild case of it. This means it’s working. I’ll let you google GVHD too if you want more of an explanation. I need to be within about 30 minutes of the Seattle Cancer Care Alliance for about 3 months to keep an eye on the GVHD & make sure I don’t get it severely.

Now that we have the 6 month waiting period for transplants waved the next thing is to come up with some sort of secondary health insurance. Regence covers $250,000 for transplants & mine is going to cost about $311,000. Whoa!

2008-April 1-phone consultation

I ended up having a phone consultation last week with Dr. Holmberg from the Seattle Cancer Care Alliance because she had bronchitis & couldn’t come into the office. I still don’t know what the time frame is for me to go to Seattle or what the plan is. As of today my health insurance just changed to Regence, so everything has kind of been put on hold while we try to figure it all out. I’m thoroughly confused about everything & just don’t have any answers for anyone right now. I have an appointment with Dr. Raish next week & hopefully we’ll find out what’s all going on & when.

2008-March 24-Xango mangosteen juice

My consultation at the Seattle Cancer Care Alliance is tomorrow. The acupuncture I was having done for my neck & shoulder problem hasn’t improved at all, so I started physical therapy last week. A couple weeks ago my left arm started hurting & my hand was swollen. They thought I might have a blood clot, so did an ultra sound on it last Tuesday. Thank goodness it came back negative or I would have had to start giving myself the blood thinner shots again. Now they think it might be something called lymphedema, which is swelling of the lymph nodes. I thought the oncology nurses told me this is something that is caused by the radiation. Radiation can also damage muscles, which might be the case in my neck & shoulders. My mom & I were just recently told about Xango mangosteen juice. There are people who have had cancer that drank it & their cancer is gone. There is a list of about 50 other things it can help with-anything from allergies, arthritis, alzheimers, acne, diabetes, headaches, weight loss, etc. Normally the directions are to drink a couple ounces a day. Because I already have cancer I need to drink a 25 ounce bottle of mangosteen juice & 1 gallon of distilled water for 21 days. My mom has had pain in her hands & feet for about 6-9 months, so she started drinking the juice. After 3 days her pain was completely gone. I’m praying for a miracle for myself! My mom became a distributor so we could get it cheaper. If anyone is interested in it let me know.

March 4, 2008-CAT scan results

I had my CAT scan today. Two spots showed up on the right side of my neck & about a dozen spots in my lungs. Dr. Raish wants me to do another stem cell transplant, but this time I’ll be using someone else’s stem cell instead of my own. There is a lot more involved in this type of transplant, so my doctor wants me to get started right away on getting things lined up while I still feel good. Sometime in the next couple weeks I will have a consultation at Fred Hutchinson Cancer Research Center in Seattle. They’re the only ones that do this type of transplant around here. I still need to have a PET scan & another biopsy surgery to confirm 100 % that this is cancer. I won’t know when those will be till I have my consultation appointment. I will have to have another catheter put back in my neck for the transplant & I’ll have to stay in Seattle again for an extended period of time. I forgot to ask, but I assume I’ll lose my hair again also. It’s only a couple inches long right now. I was wondering why it was growing so slow & just found out recently it’s because of the stem cell transplant.

I started going to acupuncture at the Cancer Care Center to try & alleviate my neck & shoulder pain. I’ve only had 2 treatments, so haven’t noticed a difference yet. I also started walking a couple weeks ago. I feel good & I feel like I have energy, but it will still take some time to build up my strength.