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.

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.

Mask for Radiation

This is the mask that I wore for radiation to keep my head correctly positioned.

Update - Michelle was released from the hospital Tuesday night (which means she's keeping her food down!) and has resumed radiation. The HOPE is that she would be done with radiation sometime next week, but nothing is guaranteed.

Michelle's friend Jen W. was kind enough to send out an email update on Michelle's behalf. For those of you not on an email list and wondering how things are going:

Michelle asked that I send out a little update to all of you. Unfortunately, she was admitted to Skagit Valley Hospital over the weekend due to dehydration. Her radiation last week on her neck area burned her throat (think a severe sunburn) and has made it impossible to eat or even attempt to keep foods down. They have her hooked up to a Pick Line so she is getting a clear IV line and also a nutrient formula line into her system. She is also hooked up to a pain medicine line that administers pain medicine about once an hour but she can get more if she needs it. She tried to eat some soft solids yesterday but threw them back up and when they brought her her dinner last night (clear liquid diet only) she was hesitant to try to eat as she was worried that she would throw up again and she says that hurts the worse. Of course, she will not be allowed to leave until she has eaten some food. They have stopped the radiation treatments until she heals some more and will re-map and NOT include the neck area. They are not sure when they will be able to resume the radiation so there is a slight set back there as to when she should have all of her treatments completed. She was in fairly good spirits when we left last night; we were in the 3^rd quarter of the Packers/Giants game and based on who she was rooting for and the outcome of the game I will guess she ended the night a little disappointed!!

She has slim to none cell service in the hospital so please remember that if you try to call her. Above all, please continue to keep her in your prayers and thoughts. I will let you know when she has been released and is back at home, if she is not feeling up to it.