Tricia eating a few crackers before getting hooked up to the needles. She has no idea that the next 5 hours will be ridiculous.

First hookup attempt on the left arm. Looks good. (yeah, right!)

I think this is where it started to go wrong...

Fun, right?!

The blood coming out Tricia's right arm (gotta pump that ball to get it flowing!)

The nun hat ice pack. Helped a bit.

Cleaning out the tubes with saline.

There it is! First day 6.42 million stem cells.

Bruising from day one of apheresis on Tricia (ALMOST compares to some of Michelle's bruising from the weeks before. I think Michelle still wins!)

Michelle and Tricia, day 2 of apheresis (and done!) for Tricia, day of transplant for Michelle (sorry, they are a little dark!)

Lovely fruit display from Covenant Offices (where Tricia works)

Day after transplant, waiting to have our blood drawn. Tricia is feeling MUCH better, Michelle is tired and still swollen from being on Prednisone.

Tricia and Diane S., our wonderful Blue Team Nurse

Michelle and Eric H., our social worker

Day after transplant, Phong, Michelle, and Jim

Tricia here. Mom set up a new site under CaringBridge for updates on Michelle - apparently some people have had a hard time finding this site.

The new site is:

http://www.caringbridge.org/visit/michelledekok

Or you can go to www.caringbridge.org and type in "michelledekok" (no spaces) under the "Visit a CaringBridge website".

On the site you can subscribe to the journal, which sends notifications of any updates directly to your email.

The view of Mt. Rainier from the windows down at the end of the hall from Michelle's room:

One of Michelle's newest, darkest, biggest bruises (ouch!).

2008-August 1-a 2nd blood clot & chemo put on hold

I got the results from my ultrasound & I have another blood clot. This one is in my right arm where my central Picc line is. Because of this they had to put a new line into one of my veins to do the platelet transfusion I needed Wednesday. The chemo I was supposed to do today is now on hold because we can’t use my Picc line anymore & you can’t put chemo through a regular line right into your veins. It would get into the tissue & do damage. The only way I can do chemo is to have the double lumen Hickman catheter (the one I had put in for my last transplant) put in sooner than later. And because I have a history of blood clots & already had the one in my superior vena cava (my main vein) the doctors didn’t want to put the catheter in till right before the transplant.

There is a problem though with having the catheter surgery because I am on a blood thinner. I cannot have any blood thinning medication in me when they do the surgery because there is the possibility of bleeding to death. The Warfarin blood thinner that I was taking is in a pill form that takes 4-5 days to get in & out of the body. The doctors had me stop taking that. There is a Heparin blood thinner that can be run intravenously 24/7 that takes an hour to get in & out of the body. The doctors are going to call me today about being admitted into the University of Washington Medical Center this evening to start that. Monday they would take me off the Heparin blood thinner, check my blood to make sure there is no blood thinner left in me, quick have the surgery to put the catheter in & immediately put me back on the blood thinner.

But, there are more complications. Normally Heparin keeps people from getting blood clots. There are rare instances where Heparin actually causes blood clots. Seattle Cancer Care Alliance (SCCA) is waiting on blood test results to see if I am one of those people. That would mean I cannot do the Heparin blood thinner & a new plan would need to be come up with.

I have been a difficult case for SCCA. Everything that can go wrong seems to be. They are constantly changing their plans. I am so thankful to have these doctors taking care of me. I try to be thankful for even the smallest things that take place in my life. I definitely do not take for granted anything anymore. Even with so much going wrong I make myself thank God for the smallest, littlest, tiniest things that go right or make my life easier. Believe me. This is difficult. But it’s the only way I’m going to get through this.

2008-July 27-started 2nd 28 day chemo regimen

Friday dad & I left Mt. Vernon at 9:30 a.m. for Seattle & didn’t get home till after 11:00 p.m. that night. Chemo started 1 ½ hours late. Then they changed my IV fluids running with the chemo from 3 to 4 hours. It was something to do with what showed up on my blood draw from the morning. My platelets showed up low again on the blood draw, so I had another platelet transfusion. We had to wait 2 hours after I was done with chemo before the platelets showed up from the Puget Sound Blood Center or something like that in downtown Seattle. It took 2 ½ hours for the transfusion. They had to keep stopping & give me Benadryl because I was getting a rash again. I was just told today that someone we know had a platelet transfusion down there & he quit breathing, so that is a possibility that could happen to me too. That freaked me out.

Thursday night I woke up in the middle of the night with extreme pain where the cancer is. It was gone by the morning, but one of my doctors wants me to do an ultrasound to see if it’s something to do with the blood clot. She wanted it done Friday, but couldn’t get it scheduled in on such late notice. I think I’m supposed to have it tomorrow, but I haven’t heard yet.

I’m having the needle biopsy done at the University of Washington Medical Center next week to check out the deal on the nodules around my thyroid.

I did confirm that I cannot do a third 28 day chemo regimen. Thank goodness. I think it’s because it’s too hard on the body to do more-too much toxicity or something like that. So the transplant should take place sometime at the end of August or beginning of September. I think the only thing that could mess that up is if I get sick.

2008-July 24-transplant pushed back 2nd time

I met with one of my doctors yesterday & got the results of my PET/CT scan. The cancer is responding to the chemo & has shrunk. It always has though. The problem is it comes back so fast. He thought we could go either way-do another 28 day chemo regimen or go ahead with the transplant next week. He needed to consult with some expert though & get back to me. My nurse called me this morning with some very disappointing news. The transplant is on hold again & pushed back another month. They want me to do another 28 day chemo regimen. I am very upset about this as I just want to get on with my life. I know they’re doing what is best for me, but it still doesn’t make it any easier. I was hoping to get off the insulin for the temporary diabetes within the next week. As prednisone is part of the chemo regimen & is what caused the diabetes I will have to deal with that for at least another couple months. I don’t think they can do a third 28 day chemo regimen as that would be too hard on my body, but I don’t know that for sure. I’m assuming we’re looking at the beginning of September to do the transplant, which means I wouldn’t be back home till the beginning of December. I find out more details tomorrow.

Tuesday after I did my PET/CT scan I had to have a platelet transfusion because my platelet count was so low. There are many possible side affects as the body recognizes something foreign in it & I got a rash covering my whole body.

They want to do a needle biopsy on the nodules around my thyroid. They did not shrink from the chemo, so I’m assuming it’s not cancer, but I don’t know that for sure. I don’t know when that biopsy will be yet.

My lymphedema (swelling of the lymph nodes) is not getting any better. My left hand is still very swollen. The soonest Seattle Cancer Care Alliance can get me in for physical therapy is July 30.

This is all very wearing on me. I’m crying as I write this. I start chemo again tomorrow.

2008-July 9-second chemo treatment in Seattle

I did chemo on Friday, the 4th & felt fine again. At first they weren’t sure they were going to let me go through with it because my right hand was tingling like it was asleep & my left hand was swollen from the lymphedema (swelling of the lymph nodes). I had an ultrasound done on Monday & a CAT scan on Tuesday to make sure it’s just lymphedema & not the blood clot moving down my left arm. I think this lymphedema is something I’m going to have to deal with the rest of my life. It doesn’t seem like there’s much that can be done about it. I have compression sleeves I wear, but I don’t notice a difference. I think at some point Seattle Cancer Care Alliance will have me do physical therapy & massage therapy for it, but they haven’t scheduled anything so far.

My days stay pretty busy. I have a lot to do & keep track of. First thing when I get up I have to remember to take my temperature. Before I can eat breakfast, lunch & dinner I have to prick my finger & check my blood sugar level. I have a short acting type of insulin I take before meals & a long lasting type I take before bedtime. If the numbers are high I stab myself in the leg with insulin. Fun times. I have to write down everything I eat, measure it & count my carbs. At 9:00 a.m. I take 18 pills. At 10:00 a.m. I clean & flush my central Picc line. At noon I take another pill. At dinner I take 3 more pills. Before I go to bed I check my temperature & my blood sugar level & shoot up again. =)

The PET scan will be somewhere between July 21-24 to see if the chemo has suppressed the cancer enough. So by the end of that week I should know if I’m doing the transplant the following week or if I have to do another 28 day regimen.

I forgot to mention in my last update the hair situation has changed. The chemo I just did will supposedly make my hair fall out again or possibly just thin. I check it everyday & nothing has come out so far.

I also forgot to mention some nodules showed up on or around my thyroid. They don’t know if it’s cancer yet or not. If the results of the PET scan show they’ve shrunk then it’s cancer, but if they don’t change then apparently it won’t be anything to worry about.

Right now I have appointments at least every other day at the Seattle Cancer Care Alliance-blood draws every other day, weekly Picc line dressing changes, a weekly meeting with my doctors & a weekly meeting with the nutritionist to stay on top my insulin dosage. I don’t have anything tomorrow, so I get a day off. Yea!

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.

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.

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.

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.