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. =)
Tuesday, April 22, 2008
Wednesday, April 16, 2008
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!
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!
Tuesday, April 1, 2008
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.
Monday, March 24, 2008
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.
Tuesday, March 4, 2008
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.
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.
Friday, February 8, 2008
February 8, 2008-done with radiation
Well, I started radiation December 18, but then we had to stop. I found another lump higher up on the left side of my neck that no one seemed to know anything about, so they had to completely remap where they were going to radiate me. At that time I didn’t understand what they were doing, so I was pretty frustrated & upset. Every day they didn’t radiate me was another day I was going to be in pain. They kept taking x-rays instead of radiating me every time I’d go in. They also needed to make a mold of my head for a mask I had to wear to keep my head correctly positioned. The day they tried to make the mask I ended up throwing up. I was in too much pain & too stressed out. That weekend before Christmas I was absolutely beside myself & I stopped working again. My doctor finally got me on some pain medication that eventually worked. The first couple days all I did was kept throwing it up. We talked to an on call oncology doctor over the weekend that told us to try spreading it out instead of taking it all at once. I was taking Prednisone & Percocet. The Prednisone helped the pain by reducing the inflammation & just in time for Christmas I was completely pain free. What an absolute relief!
The day after Christmas I ended up with the flu-throwing up, diarrhea & extreme stomach cramping. I had never had anything like it before. After spending two nights at my parents I ended up in oncology for the day getting IV fluids to re-hydrate me. Just what I needed on top of everything else. =)
New Years Eve I started radiation again. A lot of times they would call me to come in earlier-usually between 5:00-7:00 pm. I was there anywhere from 30 minutes to 1 ½ hours depending on how behind they were or how long it took them to get me lined up for radiation. The tattoos they gave me were used to line me up right down to the millimeter or centimeter & the mask was secured down over my head. I did not particularly enjoy that mask. It would push down on my throat & a lot of times I’d have to really concentrate on not throwing up. I did about 2 weeks of radiation & then I started going down hill, so we stopped again. The week of January 7 my throat started hurting. It was burned from the radiation. By the following week I was throwing up several times a day. The pain was so much that I couldn’t eat or drink. Friday, the 18th I ended up in oncology again hooked up to IV fluids for hydration & then was admitted into Skagit Valley Hospital, where I spent 5 days. Besides the regular IV fluids they also needed to give me a thicker form of fluids that had protein & nutrients in it. This required me having a minor surgery that Saturday night to have a central Picc line put in the triceps area of my arm.
I started up radiation again Monday, the 21st. They had done some remapping & were not radiating my throat anymore. The last lump I had found went away on its own. My radiation doctor thinks it was just an infection & not cancer. My last radiation treatment was last week Wednesday, the 30th. Woo hoo! Right now I’m dealing with the burn on my skin, which covers half of my neck, under my left arm & the top left side of my back. They say it gets worse before it gets better. The burn under my arm is actually black & if I move too much it feels like my skin is ripping open. I put vitamin E cream on it, but it only helps so much. I’m also dealing with some new pain in my neck & shoulders. It feels like a prickly or burning sensation. And there’s a spot on the right side that feels like I’m being stabbed & gets so painful I need to lay down sometimes. It’s the only thing that helps. No one seems to be able to figure out what’s causing it. I don’t know if it’s a side affect of the radiation or what.
I met with Dr. Raish today. I found a lump on the right side of my neck a few days ago. It seems to be a little bit smaller than when I first noticed it. Hopefully it just goes away like the one I found on the left side. I have a CAT scan scheduled for Tuesday, March 4. I also talked to him about a small bump on my right wrist where I was hooked up to IV fluids. It feels like a bruise. It doesn’t feel that great cuz it gets bumped all the time. It could be a small blood clot or scar tissue. I don’t really know. He didn’t seem too concerned about it though. I go back to monthly doctor appointments with him now & we’ll be scheduling a PET scan at the end of April or beginning of May.
I’m just trying to recuperate now & get back to normal. I didn’t send any updates cuz I just didn’t feel good most of the time & was really wiped out & had no energy. You’ll hear from me in a month when I get my CAT scan results back.
The day after Christmas I ended up with the flu-throwing up, diarrhea & extreme stomach cramping. I had never had anything like it before. After spending two nights at my parents I ended up in oncology for the day getting IV fluids to re-hydrate me. Just what I needed on top of everything else. =)
New Years Eve I started radiation again. A lot of times they would call me to come in earlier-usually between 5:00-7:00 pm. I was there anywhere from 30 minutes to 1 ½ hours depending on how behind they were or how long it took them to get me lined up for radiation. The tattoos they gave me were used to line me up right down to the millimeter or centimeter & the mask was secured down over my head. I did not particularly enjoy that mask. It would push down on my throat & a lot of times I’d have to really concentrate on not throwing up. I did about 2 weeks of radiation & then I started going down hill, so we stopped again. The week of January 7 my throat started hurting. It was burned from the radiation. By the following week I was throwing up several times a day. The pain was so much that I couldn’t eat or drink. Friday, the 18th I ended up in oncology again hooked up to IV fluids for hydration & then was admitted into Skagit Valley Hospital, where I spent 5 days. Besides the regular IV fluids they also needed to give me a thicker form of fluids that had protein & nutrients in it. This required me having a minor surgery that Saturday night to have a central Picc line put in the triceps area of my arm.
I started up radiation again Monday, the 21st. They had done some remapping & were not radiating my throat anymore. The last lump I had found went away on its own. My radiation doctor thinks it was just an infection & not cancer. My last radiation treatment was last week Wednesday, the 30th. Woo hoo! Right now I’m dealing with the burn on my skin, which covers half of my neck, under my left arm & the top left side of my back. They say it gets worse before it gets better. The burn under my arm is actually black & if I move too much it feels like my skin is ripping open. I put vitamin E cream on it, but it only helps so much. I’m also dealing with some new pain in my neck & shoulders. It feels like a prickly or burning sensation. And there’s a spot on the right side that feels like I’m being stabbed & gets so painful I need to lay down sometimes. It’s the only thing that helps. No one seems to be able to figure out what’s causing it. I don’t know if it’s a side affect of the radiation or what.
I met with Dr. Raish today. I found a lump on the right side of my neck a few days ago. It seems to be a little bit smaller than when I first noticed it. Hopefully it just goes away like the one I found on the left side. I have a CAT scan scheduled for Tuesday, March 4. I also talked to him about a small bump on my right wrist where I was hooked up to IV fluids. It feels like a bruise. It doesn’t feel that great cuz it gets bumped all the time. It could be a small blood clot or scar tissue. I don’t really know. He didn’t seem too concerned about it though. I go back to monthly doctor appointments with him now & we’ll be scheduling a PET scan at the end of April or beginning of May.
I’m just trying to recuperate now & get back to normal. I didn’t send any updates cuz I just didn’t feel good most of the time & was really wiped out & had no energy. You’ll hear from me in a month when I get my CAT scan results back.
Wednesday, February 6, 2008
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