Michelle's Cancer Treatment Update

2008-08-29T14:24:00.000-07:00

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

2008-08-06T08:05:00.000-07:00

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.

2008-08-05T06:45:00.000-07:00

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

2008-08-04T07:00:00.000-07:00

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

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

2008-08-01T13:28:00.000-07:00

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

2008-07-27T21:04:00.000-07:00

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

2008-07-24T17:29:00.000-07:00

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

2008-07-10T01:07:00.000-07:00

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

2008-06-29T18:56:00.000-07:00

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

2008-06-29T10:49:00.000-07:00

2008-June 26-Tricia possibly not donor & transplant pushed back

2008-06-26T16:18:00.000-07:00

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

2008-06-23T00:19:00.000-07:00

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

2008-06-15T19:48:00.000-07:00

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

2008-06-10T20:13:00.000-07:00

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

2008-05-30T00:53:00.000-07:00

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

2008-05-26T00:17:00.000-07:00

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

2008-05-17T10:08:00.000-07:00

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

2008-05-09T22:48:00.000-07:00

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

2008-05-02T15:48:00.000-07:00

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

2008-04-22T11:59:00.000-07:00

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

2008-04-16T00:32:00.000-07:00

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

2008-04-01T15:11:00.000-07:00

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

2008-03-24T10:34:00.000-07:00

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

2008-03-04T22:35:00.000-08:00

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

2008-02-08T18:17:00.000-08:00

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

2008-02-06T22:50:00.000-08:00

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

2008-01-23T09:16:00.000-08:00

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.

2008-01-21T11:01:00.000-08:00

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.

December 18, 2007-first radiation treatment

2007-12-18T16:52:00.000-08:00

I had my first radiation appointment today at 1:00 pm. Dr. Raish had told me that unlike himself radiation is prompt & on time with their appointments. I heard they lasted about 30 minutes & I was there almost 3 hours. It was a long wearing day. It was a little frustrating & upsetting for me. Monday when they called me with my start time for today I asked if it would be every day at the same time. It will not. My appointments will be at 7:00 pm. I was completely shocked. I didn’t even know they were open in the evenings. That was a little bit upsetting to me also. I won’t have much of a life again for the next month. I’ll be missing out on friends & family home for the holidays. They’re also open New Years Eve, so I’ll be having treatment then. There is a possibility if someone finishes up with their radiation treatment I might be able to get a different time. I don’t know how far down the list I am though. As of right now my last radiation treatment will be January 15. Sorry this is such a down update. It’s just been a little bit rough lately.

December 13, 2007-moving forward with radiation

2007-12-13T14:46:00.000-08:00

I met with Dr. Raish Tuesday & even though we don’t have all of the results back yet from the biopsy he has enough information that says I’ve got Hodgkin’s again & we’re moving forward with radiation. He prescribed Percocet for me to try for the pain instead of Vicodin. We’re trying to find something that doesn’t make me so sleepy. I’m just so tired I can’t even function most of the time. I had a radiation consultation yesterday. They had me watch an informational video, asked me a bunch of questions & tattooed me in 3 places that they’ll use for lining me up for radiation. They’re going to call me Friday & let me know when my first radiation appointment is. They told me it could be 10 days yet, which was very upsetting. I told them I can’t wait that much longer. The pain is just killing me. Hopefully they can put a rush on it.

December 7, 2007-biopsy surgery was yesterday

2007-12-07T16:22:00.000-08:00

It was a long day yesterday. My surgery got moved up. I had to be at the hospital at 9:00 am & didn’t get home till 4:15 pm. They got what they needed from the spot on my neck, so didn’t do anything under my arm. It’s being sent down to Seattle & I should have the results in about a week. When I woke up from surgery my arm, shoulder & neck area were all numb. It was nice because I couldn’t feel the pain under my arm all night. The pain is slowly coming back now though. I try to keep it under control by taking Aleve, Vicodin & anti nausea pills. I meet with Dr. Raish Tuesday. I’m assuming it’s to go over my radiation schedule, since we probably won’t have results back yet from the biopsy. Until then…

December 2, 2007-biopsy surgery Thursday

2007-12-02T18:26:00.000-08:00

The antibiotic I’ve been taking for the possible infection has done nothing, so we’re moving forward with biopsy surgery. It will be Thursday at 12:30 pm. I’m hoping there will be a cancellation & they can get me in sooner. They’re going to biopsy a lump I just noticed Wednesday morning. This is a new one. I believe the one my doctor found was in the same place as the last 2 times near my collar bone. This lump is on the left side of my neck about half way up kind of towards the back. They’re going to dissect the lymph node while I’m still on the operating table & if they don’t find anything then they’ll go after the one under my arm. That will be more dangerous with all the nerves & tendons & everything in that area. They don’t want to biopsy at the collar bone again because of all the scar tissue. I’ll meet soon after this with Dr. Raish to discuss when things are going to start with radiation.

November 27, 2007-two lumps found

2007-11-27T15:41:00.000-08:00

I had my 3 month PET scan last week & got my results today. Two lumps showed up-one in the same spot on my neck & one under my left arm. I’m going in for biopsy surgery again. I’ll find out Friday afternoon at my consultation with my surgeon when the surgery will be. Dr. Raish put a rush on it, so it will be soon. My surgeon will let me know if they’re going to cut open both areas or not. The lymph node under my arm is deep & would be more involved to get to than the one in my neck. The pain under my arm feels like the pain that was in my neck the first time & is just getting worse & keeping me awake at night.

Dr. Raish gave me a prescription for an antibiotic for the possibility that this is just an infection. It could take a week or two to get my results from the biopsy, but Dr. Raish is going to get me scheduled for radiation just in case, so we’ll be able to start right away. If this is indeed cancer again I will be having radiation everyday for a month. I won’t lose the hair on my head, just the areas that they radiate. I will let you know this weekend when my biopsy surgery will be.

October 31, 2007-monthly checkup

2007-10-31T11:33:00.000-07:00

I had my monthly checkup Friday. There had been a lump under my left arm Dr. Raish checked for, but it’s gone now. I think I just pulled something at work, but I thought I better be safe than sorry & have him check it out. I started working again October 13 back at Birch. Right now Fridays & Saturdays are what’s available, which works out fine. It gives me a chance to ease back into things. I work as long as I can on those days & then go home & take a nap. I don’t want to get worn down & end up getting sick. I am allowed to eat lettuce & fresh fruits & vegetables in restaurants again. My next PET scan will be at the end of November. They’re going to continue doing those every 3-4 months for a year. Dr. Raish reiterated to stay away from people who are sick until 6 months after the transplant. I think I’ll listen to him. I really have no desire to be sick again anytime soon. =)

October 4, 2007-I got the okay to work

2007-10-04T12:23:00.000-07:00

I had my monthly doctor appointment Friday & got the okay from Dr. Raish to work after October 10, which is 100 days after the transplant. He also said I can go out to eat at restaurants, to movie theaters, church, etc. after the 10th. I still need to continue to stay away from people who are sick. That’s definitely going to be a challenge with the cold & flu season coming up. I think the longer I keep my distance from people & don’t hug or shake hands the better for me. I forgot to mention in my last update there were two spots in my stomach that showed up on the PET scan. Cancer shows up very bright on the scan & this barely lit up. I think it’s probably just scar tissue from all the shots I had to give myself. I have a PET scan again in a couple months to keep an eye on everything. My hair has slowly been growing back. It’s coming in thick & very soft again. It’s barely a ¼ inch long. It’d really be nice to have some hair again. =) My next update will probably be in about a month after my next doctor appointment, unless something changes.

August 31, 2007-PET scan results

2007-08-31T15:13:00.000-07:00

I just got my PET scan results & it came back clear. I am cancer free! I’ll have monthly blood draws/appointments for a year & another PET scan in 3 months just to keep an eye on everything.

August 17, 2007-good doctor appointment

2007-08-17T17:16:00.000-07:00

My doctor was gone on vacation for 3 weeks & I finally met with him today. He wants me to wait about 3 months after my transplant before I go back to work. My transplant was July 2. I won’t be able to pull off 10 hour days right away-just take it a little bit at a time. Between months 3-6 I still should not be around people who are sick & there seems to always be someone sick at work, so I’m not sure how that’s all going to work out yet. The full body rash eventually went away-never figured out what caused it. He’s keeping me on the blood thinner pill a few more weeks & then I should be done with that. As of last week my taste buds seem to be back to normal. Food tastes good again & like it should. Yea! I try to make sure I go for a walk everyday to build up some strength. It’s not very fast or too far, but it’s better than nothing. My PET scan is probably going to be sometime the week of the 27th. They’re going to let me know sometime next week what day it is scheduled for. Then I will meet with Dr. Raish a few days after that to get my results. Hopefully by the beginning of September I’ll know if this stem cell procedure worked or not. My doctor seems to be okay with me venturing out more, so maybe I’ll still be able to have a little fun this summer. =)

July 25, 2007-trying to figure out cause of rash

2007-07-25T10:51:00.000-07:00

I had another doctor appointment yesterday afternoon. He’s having me stop a bunch of the medications & things I take to try & find out what’s causing the rash. One of the things I get to stop is the Lovenox, which is the blood thinner shot I would give myself every morning & night. I am so glad that one’s done with. No more shots for me. I take a medication for the next 6 months to prevent a type of pneumonia transplant people like me are susceptible to. I also take a medication every 12 hours for the next year to prevent shingles. I have another doctor appointment Friday. We’re waiting on the results of my blood draw to see if we need to adjust the amount of Coumadin I take as a blood thinner.

1st doctor appointment back in Mt. Vernon

2007-07-24T14:36:00.000-07:00

Here are some of the things I found out at my doctor appointment last Thursday. The first 2 months after transplant are the most critical. I’m supposed to stay away from enclosed places. There’s no point in me going to restaurants anyway because food doesn’t taste that good to me. Sometimes it tastes horrible. Other times it doesn’t taste like it’s supposed to. Or it won’t taste at all. Eating is not enjoyable right now. I asked my doctor how long till food would taste normal again. Everyone’s different. There really isn’t an answer. He said it could be weeks or it could be months.

My PET will take place 6-8 weeks after transplant, so will be sometime next month. I will have blood draws to check my counts every week for 4 weeks, then every other week for 2 months, then once a month for at least 6 months. 1 year from transplant they’ll check to see if I need my childhood vaccinations or not. 6 months from the transplant they talk about my immune system being back to normal.

I’m still taking the blood thinner shot every 12 hours, along with the pill form since Friday. I’ll find out later today if I can just take the pill form & stop the shot. That would be great since I think the shot has caused the rash I have again. It’s worse than last time though. Besides covering my whole body it’s on my face & head too. It is making me miserable. I don’t think I even fell asleep last night. I just want a prescription to make it go away, but all I’m told to do is put itch relief lotions on it. I just have to wait it out.

My eyelashes are pretty much gone. Some are really short & there are a few long ones left. My eyebrows have really thinned out too. Apparently it takes those longer than hair to grow back. My hair has started to grow back, but you have to look really close to see anything. I haven’t been feeling the greatest since Friday. There were a few times over the weekend I felt like I was going to black out & I had a really hard time getting up & out of bed. I’ve been very cold too, which is a side affect from this whole procedure. I’m just chilled to the bone & nothing seems to warm me up. Maybe it will help that I have another doctor appointment today & so I’m forced to get ready & get outside.

July 17, 2007-home in Mt. Vernon again

2007-07-17T22:30:00.000-07:00

I’m home in Mt. Vernon-got here yesterday afternoon. I went into Group Health at 11:00 am to have the Hickman catheter taken out. That went 10 times better than my port a cath removal last year. I only felt a few pinches from the needle when they were putting in the numbing agent & 1 pinch when they were snipping at it to get it out. These things are supposed to be easy to get out, but each time they’ve completely attached to my body. I have an appointment with Dr. Raish Thursday afternoon to find out how often I’ll have appointments to have my blood drawn & checked & have him set up an appointment for a PET scan. We still have to make sure the cancer is gone. If it’s not I’ll need radiation then. So I’m not free & clear quite yet.

Update from Melba

2007-07-16T06:49:00.000-07:00

One more update on Michelle. Her white blood count went up considerably each day this week - usually almost doubling each day. Her Absolute Neutraphil Count (ANC) - the part of the white blood cells that fight bacteria also about doubled each day and it was those 2 things that needed to be up to a certain point before she could be discharged. Well, they got way up by Friday, but she was still having a regurgitation problem so he wanted to keep her on IV fluid drip and IV nutrition drip along with all the other 'drips' she was on - anti-nausea, anti-biotic, and who knows what else. Sat. he said maybe Monday or Tuesday discharge, but when he came in this morning (Sunday) he said she could go home if he could get the Hickman catheter pulled out. Well, after 3 tries pulling and tugging on it to no avail, he said she could at least go back to the apt. at Northgate that we've been using and that a surgeon would have to snip at it Monday to get it out. He had hoped the Sunday surgeon on call at Virginia Mason was still there, but she'd already left so we'll wait until Monday and then we can go home to Mount Vernon. Hurrah!!! This was much faster than we anticipated. We are so thankful for ALL the prayers that have gone up for her in that past months - for healing, for not so much pain, etc. She will still be very tired for a while and may not be in crowds for at least a month. As far as work goes it will probably be 2 months - don't think she'd be able to work those four 10 hour days.

We expected this to take longer based on what my boss went through, but her younger age, the reoccurrence only her second time, and the fact that she was in better health most likely were the factors for getting to this point sooner. She will continue on a coule of medications - some for up to a year - and will continue with Dr. visits on a regular basis - sure glad this can be done in Mount Vernon. She will need a PET scan in 3 weeks to look at the lymph nodes to see if the Hodgkins is actually gone and if it isn't she will have to go through radiation. So we still aren't totally out of the woods - and since we know our life on this earth is in God's hands and according to His plan we know that there are no guarantees. We've learned to take each day one at a time. Again, thanks for all your prayers and care and concern for her!

July 15, 2007-discharged from Virginia Mason

2007-07-15T21:47:00.001-07:00

I was discharged from Virginia Mason Hospital this afternoon! Woo hoo! My oncologist from Group Health , Dr. Feldman, tried pulling the catheter out of my neck 3 times, but it wouldn’t budge. I was clenching onto my legs for dear life in case it was painful. Thank goodness it wasn’t. It’s a little sore right now though. We’re at the Northgate apartment tonight for one last night. (Sigh) Dr. Feldman is going to call us tomorrow morning when he wants us to come in & have a surgeon do some clipping or something & take the catheter out. I should be home in Mt. Vernon tomorrow afternoon sometime! Yea! I feel good. I’m just really, really tired. I am pooped out just from taking a shower. I’m on a soft food diet right now. It’s very difficult to swallow anything else. I have to chew forever otherwise it just scrapes down my throat-NOT comfortable at all. I am sooooo happy to be going home & finally sleeping in my own bed. I hated the night time because it would just drag on. I had such a hard time sleeping. I finally asked for something to make me sleep last night & it worked pretty good. I am allowed to have visitors, but only if you are not sick or been around people who are sick. You need to be completely healthy. My immune system is going to be down for a long time & I am going to be very susceptible to germs, bacteria, infection, etc. I am absolutely up for visitors & would love to see you. I miss everyone. I really feel very blessed again this second round of cancer as to how everything went for me. Thank you for all your prayers.

July 13, 2007-finally off the morphine & feeling better

2007-07-13T17:39:00.000-07:00

I’m finally off the morphine & feel well enough & with it enough to say “hey”. I had some visitors today for the first time. At least it’s the only time I remember, if I did another time. =) All my numbers are where they need to be at for me to get out of here. We’re waiting on the vomiting & diarrhea things. Yeah, I know-too much information. Good stuff. =) Right now my diet consists of chicken broth, jello & juice. Ugh. I’m not allowed anything else yet. I would give anything for a big juicy burger & creamy shake! =) Of course minus the lettuce & tomato. I’m not allowed to have fresh fruits or vegetables for a year. There is a slight chance I could be discharged tomorrow-slight. Probably Sunday, Monday or Tuesday. Just have to take each day as it comes. And it might be to Mt. Vernon to Dr. Raish’s care instead of the Northgate apartment into Group Health’s care. That would be nice!

2007-07-13T13:37:00.001-07:00

I talked to Michelle about an hour ago - she called me, which is an obvious improvement from two days ago when I tried calling her and she was convinced I was saying something about marriage (which I wasn't) and then just kept mumbling about nurses and food and the bathroom. Not being on her pain medication today meant that we could laugh about how unaware and out of it she had been and how I was feeling bad because I couldn't understand her AT ALL and was trying to get off the phone with her without hurting her feelings. Turns out I probably could have just hung up and she wouldn't have remembered. Good thing I wasn't trying to pour my heart out to her or tell her the code to my ATM in the event of an emergency. She sure didn't remember any of the conversation we had. Either way, it was fun to hear her laugh and to laugh with her in spite of herself. Michelle and I are always good at laughing at ourselves...or each other. Probably even when it's not appropriate. That's what sisters do, right?

Picture from Michelle

2007-07-13T07:57:00.001-07:00

This is a view of the Seattle sunset from the 15th floor of Virginia Mason. Queene Anne Hill is off to the left & Lake Union is off to the right.

Thursday Update - Tricia

2007-07-12T12:05:00.000-07:00

I just talked to my mom at lunch time - Michelle's white blood cell count is up to 900, and her ANC is up to 198! She did eat breakfast, but it went down the wrong pipe and she ended up throwing it back up. She's been able to refrain from punching her pain medication button since about 7 this morning, and her throat is less sore than it has been.

Update Melba

2007-07-12T08:33:00.000-07:00

T+10 - Praise the Lord! Yesterday Michelle's white blood cell count rose from 100 (which it has been at since last week - normal is 4,000-10,000) to 500. The ANC (Absolute Neutrophil Count), which the nurses told me is the part of the WBC's that fight bacteria etc. rose from 0 to 60. So those stem cells must be starting to work!! Michelle even ate part of a popsicle early in the day and for supper had some broth, grape juice, and couple jello cubes - the first she's eaten since last Thursday. She ate that around 6:00 and had kept it down yet when I left at 9:15.

She still sleeps most of the time and still has throat pain so keeps pushing the button for the Dilaudid pain medication that she is now on instead of morphine. But it is a start and we are very thankful. She's still pretty groggy so not much good on the phone yet - maybe a couple more days. Not sure she's up to visitors yet unless you want to just sit and watch her sleep. Though she says her mouth hurts I checked and it is quite pink instead of white with mucositis - gums, tongue, and sides of her mouth tho she does have an open sore on the side of her tongue. So that's a great improvement, too. Friday will be one week in the hospital - I'll try to remember to ask a Dr. or nurse what the criteria is for her to get out or how long they think it may be yet.

T+8 - update evening Tuesday, July 10

2007-07-11T06:34:00.000-07:00

Dr. Feldman from Group Health stopped by to see Michelle today about 11:00 AM just when she was vomiting again. And she was itching badly so he took her off morphine (not sure if that's what's causing the itching or not) and put her on Delotid and gave her more anti-nausea medication. The Delotid really put her out - she slept all afternoon and the nurse finally got concerned cuz she was sleeping so deeply so called the Dr. They lessened the amount of Delotid and when Denny called about 7:00 she was finally coming out of it and was awake, but not enough to take phone calls yet.

Her vitals have been stable today - pulse, temperature etc. so that is good. Her white blood cells have gone up a little, finally, from 100 to 200 (need to be in the 5,000 - 10,000 range). Though the Dr. has now changed her diet to fluids like broth, jello, and other soft foods she is still not able to eat. They moved her to another room this afternoon cuz her room was across from the nurses station and they needed it for a patient on whom they needed to keep close watch. Anyway, from her new room she can see I-5 and Lake Union to the northwest - Den said he could see a lot of sailboats out this afternoon.

Tuesday Update - Melba

2007-07-10T09:38:00.000-07:00

Dennis went down to Seattle Sunday night and I came home to work for a couple of days. I think I mentioned that my sister Sharon had come over to the hospital on Saturday to give me a breather. I figured as an RN she'd know what to ask nurses etc. It's not like she could visit since Michelle mostly sleeps. She wakes to go to the bathroom, rinse her mouth with salt water to help keep it clean and the mucositis under control - they don't want her mouth to get septic.

Talked to both her and Dennis Monday morning and hope I've got it straight - apparently when she went to the bathroom the pole that all the bags of fluids of various sorts hang on tipped over and she called for a nurse and no one came right away which sort of freaked her out because all these tubes are connected to her Hickman catheter. She later heard nurses in the hall talking about being blamed and she wasn't sure if they were talking about the fact that no one helped her to the bathroom and they'd be in trouble. She also didn't think the morphine line was working right and in the 'morphine state' of mind got a little upset and called Dennis about 8:00 and asked him to come right away. She knows that while on the morphine she doesn't understand all that is going on and wanted to make sure everything was working the way it should be. The new day nurse was very reassuring she said - we understand more than ever the need to have a caregiver with a patient at all times to ask questions and to help with the little things while nurses are busy with other patients. They have added IV nutrition now and more anti-nausea medication because, even though she doesn't feel nauseous, her stomach gets nauseated causing her to throw up, which is never pleasant. Denny said her pulse is down to 104 so that's reassuring. It still needs to get down to about 60 eventually.

Our prayer request is that the stem cells will hurry up and start kicking in to re-form her blood so she can begin to eat and drink the regular way and that the immune system will begin to be in place.

As to visitors - she mostly just sleeps so there isn't much point at this time. As to telephone calls - she's so groggy she can't always comprehend although I did talk to her about 6:00 Monday night and she sounded quite coherent. So, for a few more days we'll not encourage any visitors or phone calls. We've learned to take it a day at a time and to be patient. Thanks again all of you.

Sunday Upate - Melba

2007-07-08T13:51:00.000-07:00

T (transplant) +6 - Michelle, though very groggy from the morphine, was able to talk to Dr. Mathis, the hospitalist Saturday evening. Hospitalists are a relatively new thing I guess. Dr. Mathis works for Group Health Insurance and cares for their patients at Virginia Mason Hospital. Michelle has developed some infection in the Hickman line and with no immunities it must be taken seriously. The Dr. said they would know more once the cultures had grown (I guess in a petri dish) and Sunday morning they would decide which anti-biotic to add to her fluid IV. Since she can't keep food down they added Dextrose to her Potassium IV plus an anti-fungal anti-biotic. Drip, drip, drip - she has all kinds of lines dripping into her Hickman lines. She did tell the Dr. she felt fine - with the morphine - was expecting to feel a lot worse, although this is bad enough. The Dr. said she is doing very well at T+6 and her color looks good. Though she felt too groggy and unsteady on her feet to try and take a shower we did take a very short walk down the hall in the afternoon. A technician came by right after that to take her vitals and her pulse was about 150, which is quite fast and her temperature had gone up to 102 degrees. He rechecked that and it was 100 degrees, which shows she does have a fever. The RN said being a bit dehydrated would cause the faster pulse, although Michelle couldn't feel that her heart was racing. So they keep on top of each little thing with some added drug. The next 5-6 days will be the 'low' point until her stem cells start doing their thing.

My sister, Sharon, came from Auburn to spend time with Michelle Sat. allowing me to come back to the apartment to shower and have lunch, although I've been eating Michelle's meals cuz they keep delivering them. Sharon showed me bus schedules so I was able to take one back from the Northgate Mall Transit Center to the hospital - a nice gal named Meadow helped me with a bus transfer cuz I've never ridden the bus. There's no cheap place to park around the hospital - not like Seattle Cancer Care where they stamp your parking ticket to allow cheaper parking. Anyway, I managed to make my way back to the apt. on the bus, but did make a car trip back to VM cuz there were some things Michelle needed from the apt. - at least the parking garage is free after 6:00PM. She encouraged me to go ahead and sleep at the apt. as she's more comfortable with the routine and nurses now. Her attitude is good and we just pray for the stem cells to grow fast.

Saturday Update - Melba

2007-07-07T16:58:00.000-07:00

Michelle was admitted to Virginia Mason Hospital yesterday after her appt. at Group Health - her throat was so SORE she couldn't eat or drink and swallowing was very painful. Once she was admitted everyone had to come poking and prodding and getting their own pieces of information - blood draws from her double Lumen Hickman catheter and the veins in her hands, x-ray, blood pressure, temp., weight, etc. etc. She is on fluids, anti-nausea, anti-biotics, and morphine and received 2 bags of blood platelets last evening as her ANC (those are something to do with white blood cells) was too low. She hasn't had a fever and diarrhea has tapered off, which are both very good. She tried to eat a vanilla shake but up it came and she's had a few other bouts of that.

The morphine keeps her pretty well out of it so she wanted me to stay so I can ask questions and write down info. The sort of recliner in the room wasn't too bad, but we are across from the nurses station, which is noisy and of course, she gets checked for this and that all night or a beeper goes off on one of the pumps for morphine or fluids because there's an air bubble or something - not peaceful.

We are so thankful for medications and these great nurses and doctors. - course it would be less confusing if they all agreed on the way things are done, but they don't so it keeps us confused as to what's best. I'm learning to ask questions and suggest things - we just hope they all know what they're doing. :)

Michelle isn't up for visitors and with her white blood cells, red blood cells, and platelets so low she has not much to fight any infection at this point. Supposedly this will continue for at least 5 days so our prayer is that by next Wed. she will be on the upward swing.

Thanks again for your prayers for her - Melba

July 5, 2007-still not in the hospital

2007-07-05T15:03:00.000-07:00

I’m still not in the hospital. As long as I’m well enough I’ll just stay at the apartment as long as I can. It’s gotten very difficult to swallow in the last couple days. The food just scrapes down my throat. I have to chew it forever before I can swallow. It was still tolerable yesterday, but it’s not today anymore. It’s painful to swallow liquids now. The last couple nights I’ve had stomach cramping, so I haven’t gotten much sleep. Group Health gave me some anti-nausea drugs to take over the 4th while they were closed, so yesterday didn’t go too badly for me. Mom & I drove down the street to the Northgate Mall parking lot & we could see the Seattle fireworks from there last night.

I went into Group Health today & had my blood drawn & checked & was hooked up to IV fluids all morning. I go back tomorrow morning for the same thing, unless I don’t make it till then. If I get a fever or can’t eat or drink I have to head to Virginia Mason. I’m really struggling on what to do for the weekend. On one hand I’d rather stay out of the hospital if I can. It’s comforting to me to know I can just go into Group Health every morning & let them take care of me. On the other hand they’re closed on the weekends & then I have to worry about everything myself. I have a big decision to make by tomorrow. Ugh.

July 2, 2007-stem cell transplant successful!

2007-07-03T15:34:00.000-07:00

The weekend did not go that great. I had a gaggy feeling in my throat most of the time. I just tried to lay still & not move. By the end of the weekend water made me feel like I was going to throw up, so I switched to something with flavor or carbonation even though nothing tasted good. Food left a bad aftertaste too, so I didn’t eat much either. As soon as I got to Group Health this morning they gave me an anti-nausea drug & I felt better. Thank goodness for drugs! I slept almost the whole entire day there.

The Seattle Cancer Care Alliance showed up at 11:30 am with 2 small bags of my stem cell frozen in liquid nitrogen in a big steel container. It took about 2-3 minutes to thaw out each bag in luke warm water in a container on the counter & just before the transplant I was given a big shot of Benadryl, that I felt instantly, so I was pretty out of it. Each bag took about 10 minutes to drip into me through IV. The only side affects I felt were a bad taste from the preservatives that were in with the stem cell & it made my throat scratchy & I coughed. As soon as the bags were done dripping into me the side affects stopped & I slept till about 3:30 pm. I feel fine right now, just tired. I have an appointment tomorrow morning to have my blood drawn to check my blood counts & to get IV fluids.

Friday

2007-06-29T13:51:00.000-07:00

I get to go home today for the weekend after my afternoon treatment. As of right now I don’t need to be hooked up to fluids for the weekend. I just have to make sure I drink plenty of liquids. I have to be at Group Health at 8:00 am Monday morning for the stem cell transplant. I’ll be there for about 8 hours hooked up to IV fluids. The actual transplant will only take about 10-30 minutes depending on how many bags they separated my stem cell into & will take place somewhere around 11:00 am to noon. Monday my immune system will be completely gone. It’s on it’s way down now. Depending on how I feel I might not have to go to the hospital Tuesday. We’ll just take each day at a time.

Update - (written Thursday)

2007-06-29T06:45:00.000-07:00

Yesterday afternoon’s chemo treatment I had some unexpected pain involved. The nurse was giving me an anti-nausea drug before I started & about half way through it I jumped out of the chair yelling in pain. It’s kind of hard to explain what happened cuz I’ve never felt anything like this before. It kind of felt like I had been shocked or this burst of extremely powerful energy went through me-very painful to say the least. Apparently I’m only supposed to have this anti-nausea drug in the morning. It lasts the whole day, so I don’t need it in the afternoon too.

Other than that little episode I’ve still been feeling good. My doctor seems surprised every time he asks me how I’m doing & I feel fine. He thinks part of it might be because I didn’t have radiation to break me down even more & I’m healthy otherwise. Hopefully I won’t be as sick through this whole thing as I was dreading. Depending on how I feel tomorrow night when I get done I might be able to go home for the weekend. Also depending on how I feel I might need to be hooked up to fluids for 4 hours on Saturday. Group Health is closed, so I would either have a nurse come in & do it or learn how to do it myself. I need to get ready to head out for my afternoon treatment again. Bye.

2007-06-27T07:07:00.000-07:00

Here's a picture of Mt. Rainer from the room I was sitting in for chemo. this morning:

Seattle Chemo Treatment Day One (Michelle)

2007-06-26T07:09:00.000-07:00

My first day of chemo went fine. It took longer than I expected because they had me hooked up to IV fluid before, during & after. We were done about 11:30 am. I noticed a metal taste in my mouth later in the day & feeling a little funny, but not bad at all for the first day. They gave me something to help me sleep at night because one of the drugs they gave me today keeps you awake. I’m used to that though. I haven’t been able to sleep for the last few weeks. One of the side affects to what I’m going through is night sweats. I mostly just feel it on my head, which you think would be cold with it being bald.

Update - Michelle (Sunday)

2007-06-25T10:16:00.000-07:00

I’m heading for Seattle tonight to get settled in at the Northgate apartment again. I have chemo. in the mornings at 7:00 am for 2-4 hours & in the afternoons at 4:30 pm for 1-2 hours. I might be home this weekend, but that depends on how I feel Friday night after my week of chemo. If you want to come down & visit me while I’m in Seattle please call or e-mail first. I may not feel up to it or I might not be allowed visitors at certain times. Hopefully I’ll be back in about a month!

Michelle

2007-06-11T06:45:00.000-07:00

I met with Dr. Raish Thursday & I will not be doing the 3rd session of ICE chemo. Group Health Cooperative (GHC) wants me in Seattle for the 5 days of hard core chemo. & the transplant in 2 weeks. The chemo. will be from Monday, June 25-Friday, June 29 at GHC, which is in the Capitol Hill area. I will go in every morning about 7:00 am for 3-4 hours & every afternoon about 4:30 pm for a shorter treatment.

The transplant will be Monday, July 2 and they will be admitting me to Virginia Mason Hospital on Tuesday, July 3. I will be in Seattle at least one month minimum after the transplant depending on how things go. I don’t have to do the neupogon shots to produce the white blood cells anymore. Two less shots per day is good with me. =) I meet with Dr. Feldmen, the oncologist at Group Health Cooperative, Friday, June 22 to go over everything. I’m sure not ready for this. I didn’t think it would be so soon.

Monday Update - Michelle

2007-06-05T06:41:00.001-07:00

I’m home!!! After my appointment this morning we went back to the apartment to clean & pack & got back this afternoon. Thursday afternoon I meet with my oncologist to find out if I’m allowed to work at all. That is also when I’ll find out what the next step is-if I’m going to do the 3rd session of ICE chemo. or skip it & head down to Seattle for the 5 days of chemo. & do the transplant. Ug.

I feel pretty good for the most part-as long as I move slow. I get winded easily. I haven’t felt nauseous in while. Thank goodness. Even though I felt pretty comfortable at the apartment in Northgate it’s nice to be home.

Sunday Update - Michelle

2007-06-04T06:37:00.000-07:00

This past week has been full of appointments. I had an EKG done, an x-ray on my chest, a physical, tested my Hickman catheter for the harvesting, signed consent papers & had my blood drawn everyday checking my blood counts & platelets. Normal healthy people have a white blood cell count of 5,000-10,000. This week my white blood cell count went down to about 2,000. If it had hit zero I would have had to go on antibiotics to keep from getting infections.

Tuesday night I ended up in bed for the evening with a horrible headache. This is a side affect from the neupogen shot that makes the white blood cells. I was given a prescription that did a pretty good job with the pain the rest of the week. I had my stem cells harvested this morning from 8:30-11:00 am. Their goal was to collect 5 million & they ended up with 4.89 million, which was good enough for me to not have to go back for a second day of harvesting. Whew. If my red cell count & platelets were too low I would have had to have transfusions during the harvesting, but everything went fine. I go in tomorrow morning to have my blood drawn again & get discharged. They need to check my blood the next few days to make sure everything is going back to normal. I’m going to find out if they’ll let me do the rest of the blood draws in Mt. Vernon, so we can go home tomorrow.

The Seattle Cancer Care Alliance (SCCA) had a great bunch of people to work with. That place is absolutely wonderful. Everything is so easy to figure out there & runs so smoothly. The apartment we stayed at in Northgate also worked out great for us. Most of the time it took us about 15 minutes to get to the SCCA. My next step is to get a hold of Group Health to find out what’s going to happen next.

Sunday Update - Melba

2007-06-04T06:32:00.000-07:00

Michelle had her blood draw this morning and the white count had gone up to 8.2 from the 2.16 of yesterday. That was good news! As a result they did another blood draw after we got done meeting with the nurse for her vitals. This was to do another kind of a check - don't ask me what - it was Greek to us. Anyway, before we left we had a visit from Jenny Giles who goes to a Covenant church on Capitol Hill - her husband had a chronic leukemia back in 1999 and while they lived here (from Arkansas) the van taking them from the Pete Gross House where they stayed - to the grocery store, went by the Covenant church and they ended up at that church. Anyway, when Tricia's boss contacted the church pastor, Jenny stepped forward to contact me - thought she might know of a place near Virginia Mason for us to stay - she didn't but had other tips for us. She knit a beautiful shawl for Michelle and delivered it last Tuesday to the Cancer Center and then drove over from her place on Magnolia to visit us.

In the afternoon Michelle got a call from SCCA to say that with the 8.2 white count and whatever they found in the extra blood draw told them it is time for the apheresis tomorrow morning. We have to be there at 8:30 for blood draw and then harvesting. The gal told Michelle it will be 3 hours, but we will have to stick around for further report later in the day to get the 'for sure' you're done report. So we could be home by tomorrow night! She has had headache today although not really horrific - she takes the prescription stuff right away to keep it at bay.

Update - Tricia

2007-05-31T09:06:00.000-07:00

I spoke with Michelle yesterday, and she sounded in good spirits. There are so many random medical tests and scans and blood drawings that I'm not quite qualified to give a rundown of (too many details - too much for my brain to remember!), but she did mention that the Seattle Cancer Care Alliance seems to have it together - their offices are calm, well run, it's easy to get to, easy to park at, people are friendly, things are on time, and most of all, they communicate clearly. Definitely an answer to prayer after all the run-around they've been getting elsewhere. It's nice to know that some places understand the importance of providing a well-run environment for people who are already dealing with enough with their health issues.

I do know after her first day (Tuesday) of having tests and blood drawn, she started feeling nauseous at the clinic and when she and my mom got to the apartment at about 5:00 p.m., she was out for the evening. When I spoke with her yesterday, though, she seemed to be doing fine.

As of yesterday, they still only have limited access to email and the internet, which should be resolved soon. For now, despite the circumstances, I am personally grateful for the time it can give my mom to read, walk and relax a bit in the evenings!

Second Chemo - Michelle

2007-05-29T06:37:00.000-07:00

My second session of chemo. went fine for the most part this week, except for all the waiting. Thursday I arrived at the hospital at 11:30 am for my 24 infusion of chemo. & ended up waiting 3 hours before they finally hooked me up. It was very frustrating. Friday morning they woke me up at 5:00 am to take a sample of my blood. I’m not sure what exactly happened, but they opened or bumped something & blood was pouring out all over my shirt. They got blood on my shirt last time I was there too. I guess I’ll wear their hospital gown next time. =) Friday I waited an hour to get started on the 1 hour chemo. I tried to nicely be persistent, but didn’t get out of there till 5:30 pm. I slept quite a bit this weekend.

I feel okay for the most part, just a little gaggy feeling off & on. I started the neupogen shots again (to produce the white blood cells). This time I’m taking 2 shots a day & 4 total between the Lovenox (blood thinner). I’m still getting conflicting stories on when the harvesting of the stem cell will take place. I’m told we’ll be in Seattle 1-2 weeks & I’m also told the Seattle Cancer Care Alliance will be harvesting them this week. We’ll just have to take it day by day, as I’ve heard things can change often.

The Quilt - Tricia

2007-05-25T06:45:00.000-07:00

Back in April, I got this email from our aunt Brenda (Melba's baby sister):

"I know Michelle is on everyones mind and in your prayers. The question is what can we do for her. A friend came up with an idea, she did for her daughter. A prayer quilt. Melba said she does get cold and this is something she can take with her and curl up in. Anyway, I hope you can all help with it. I have some Muslin material I will cut up into squares. Each of you will be getting one. Each of you will have to get a special pen that writes on fabric and then write her a message, prayer, inspiring quote or something funny. When I get them all back my friend will help me put them together and she will quilt it for me. Hope you all can help."

Last night, she went to see Michelle in the hospital, and presented her with the quilt. Here are some pictures!

If you've ever taken a picture of Michelle, you'll know this is her usual eyes closed pose :). But I couldn't resist the cute picture with my parents.

Second Round of Chemo - Melba

2007-05-23T13:07:00.000-07:00

Michelle had Dr. appt. Tues. to check her blood count before her second round of chemo - an hr. today at 8:00. Her counts were back to normal, which is good. We did ask whether Seattle Cancer Care Alliance and Group Health have all the pre-authorizations etc. settled and set up - Tami, the nurse called Medo (pronounced May do) at SCCA and she said all was ok. But when Michelle called Lynn at Group Health, Lynn was still confused by SCCA's scheduling - I sure hope those to fine institutions can get their act together before next week before us unknowlegable ones show up. It's a bit disconcerting to say the least.

The really great news is that Michelle is finally feeling ok again. She has had 3 back to normal days, which, I hope, means that the blood clot is dissolved. She asked Dr. Raish if she could work today after chemo, but there are 3 co-workers who are sick with colds (and are working) so he said at this point it wouldn't be a very good idea. Her health and staying healthy is of utmost importance right now. So, praise the Lord that she is feeling well, that her blood counts are
normal, and that we are getting mentally prepared for our stay in Seattle - our hope is that it will only be a week, but are prepared for longer if needs be.

Thanks again for all your prayers - we appreciate them and are so thankful to know the Lord is beside us every day no matter what we're going through.

Update - Michelle

2007-05-21T06:33:00.001-07:00

I have started feeling better over these past few days. The blood thinner is finally working & I don’t have the pressure in my head, the head rushes, tightness in my chest or the massive head cold headache anymore. Just in time for my second session of chemo. this week. =) Oh well. I still feel nauseous off & on throughout the day though.

Wednesday I have 1 hour of chemo. and Thursday I have my 24 hour infusion of chemo. overnight at Skagit Valley Hospital. I think the earliest I’ll be moved over to the hospital from the cancer care center will be mid to late morning. Hopefully I’ll be finished by early to mid afternoon on Friday.

My hair started coming out fast over the last couple days. Last night I didn’t sleep very well because I could feel it on my pillow & was afraid of what I was going to see in the morning. I just laid there & tried not to move till it was time to get up. Today was pretty upsetting for me. When I went to brush my hair huge chunks were coming out & leaving bald spots. I went over to my mom & dad’s & had it shaved off. I know I’ll get used to it eventually. It was just really hard to have to do that.

Next Monday, Memorial Day, my mom & I leave for Seattle to have my stem cell harvested at the Seattle Cancer Care Alliance. As of right now we’ll be down there anywhere from 1-2 weeks. We’re staying at an apartment someone is kindly letting us use for free in Northgate right off the freeway. I’m still hoping to find something closer to Virginia Mason Hospital for after I have the transplant. I have an appointment with my oncologist this Tuesday afternoon. I’ll let you know if we learn anything new or different.

Update - Michelle

2007-05-16T13:17:00.000-07:00

I have been absolutely miserable this past week. A couple of weeks ago I started a cold that has just gotten worse. At least I think it’s the cold that has given me a massive headache. I can’t even function. I just move slow for everything because I don’t feel very steady on my feet. And I lose my breath easily. The tightness in my chest & pressure in my face & head was way more tolerable than what I’m going through now.

Tomorrow will be a week of taking the Lovenox (blood thinner) & I can’t tell that anything is any better. I did use some Afrin nasal spray & took DayQuil before the spaghetti dinner fundraiser & it seemed to take the edge off for the first couple hours I was there. By the end of the evening my headache was back with full force & I ended up throwing up about 10:30 pm that night. We think it was from the constant pain from the headache & nothing to do with the chemo.

I met with my oncologist yesterday & he told me to try taking Vicodin. I took it right after dinner when I had a full stomach. I’m always scared to take it cuz it’s made me dizzy before. It seemed to take the edge off a little bit. I just took it this morning after I ate breakfast & it seems to have done the same thing. I don’t want to be taking that all the time though cuz I can’t drive then. So we’ll see if it works throughout the day.

Dr. Raish also mentioned taking the catheter out if this discomfort is unbearable. I’d have to have it put back in in about 2 weeks for the harvesting though, so I don’t want to do that. I don’t think we’re going to use that option. Monday I was told I could stop giving myself the neupogen shot (to produce white blood cells) until after my next session of chemo. Then it will be 2 shots a day. The shot giving has gotten much more bearable for me. I think I’m used to it now.

Yesterday I noticed my hair is starting to fall out-now that I’ve just gotten used to not covering it with the bandana. =( Oh well.

Fundraiser - Melba

2007-05-15T09:26:00.000-07:00

Michelle has continued to experience extreme head pressure - most likely from the blood clot blocking off the free flow of blood. As a result, her head and face are still quite swollen each morning and she continues to have headaches constantly. Some Afrin nasal spray yesterday, May 14 seemed to help some. She had blood tests again and was informed later in the day that her blood counts are up so she didn't have to do the neupogen shot. One less injection is always good news!

The Spaghetti Dinner fundraiser at Mount Vernon Christian School went super well - served over 450 people. Michelle stayed the whole 3 hours to visit and we were overwhelmed with the support from so many family members, friends, co-workers from Birch Equipment and her former place of employment-Concrete Nor'west as well as Denny's co-workers and school families and Melba's employer. It was awesome!

As Denny, Nathan, and Melba were counting the donations Michelle called - the headache caused so much nausea she was vomiting. So we rushed over to check on her and get 7-up and ice packs and get her to bed - not fun. It was quite late so the donation amount will have to wait. But we're grateful for the huge support and in a general glance can tell that God has used such wonderful friends and family to alleviate the financial concerns and we know He will take care of the rest in due time.

Prayer - Tricia

2007-05-14T11:29:00.000-07:00

Tonight is the Spaghetti Dinner Fundraiser for Michelle. Please keep her in your prayers today - especially since she's been feeling quite miserable in the past days. She's been fighting a cold and a headache as a result. She's also still feeling head rushes from the blood clot. Anyone who has ever had a headache knows how debilitating it can be!

As for tonight, people who are sick need to take special care not to hug or shake hands with Michelle, as her immune system is weaker than the average persons.

Pray specifically that she will feel well tonight so she can enjoy the company and encouragement of so many people who care for her.

Week Update - Michelle

2007-05-11T11:14:00.001-07:00

I went to work Wednesday & it went fine. Thursday morning was another story. I had a really hard time getting ready. My face was more swollen & it looked like I’d been stung between my eyes. I was feeling warm & light headed & ended up having to sit down in the shower. My vision was blurry, but I drove to work anyway, just to have the guys at work drive me home. Oncology called after they opened & had me come in. I had an ultra sound done on my neck & chest & then a CAT scan. The CAT scan showed that I have a blood clot. It’s in my chest in the main vein called the superior vena cava. They put me on a blood thinner, which is in a shot form & has to be given every 12 hours. We were at the cancer care center & hospital till about 3:00 pm, so it was a long day. They said it’s going to take a few days for the blood thinner to take affect. I didn’t sleep very well last night with all the pressure on my head. I knew there was something else going on than just anxiety. Apparently my symptoms weren’t enough that they could figure it out right away though. I’ll try work again next week.

The Week So Far - Melba

2007-05-11T06:42:00.000-07:00

Saturday afternoon (May 5) Michelle called me as her head felt awful - we spent 5 hours in the ER - most everyone thinking it was just an anxiety attack, which part of it probably was. Sunday and Monday her upper chest felt better and the redness decreased but her head still felt like it was bursting every time she leaned over even slightly.

She went to work on Wednesday, although she was late because nothing seemed to work to protect the dressing where the Hickman comes out of her skin just below the collar bone so she had to change it all. Thursday morning (May 10) she called around 8:00 a.m. to say that the guys at work had brought her home as she was so light headed and unsteady on her feet. So over to Oncology we went - nice that it is only 4 blocks away from her condo. An ultrasound showed a small clot in her upper neck but not enough to be worrisome. But her face had swelled so much and her eyesight was blurry added to the already head issue. Next was a CT Scan - and that did show a blood clot in the superior vena cava - a main artery.

We were still at the hospital at 2:00 p.m. The Dr. ordered a blood thinner called Lovenox, which is in a 'shot' form - to be given twice a day, which brings her shot count to three per day. I gave it to her last night because she just can't stand to do it. Hopefully, this will soon take effect so she can bend over in the shower to wash her hair and not feel like she's going to keel over. She hasn't had the normal side effects of all the chemo drugs for which we are grateful. A not so fun day, but we just pray that this gets to the bottom of it.

Keep praying for her - this gets depressing to say the least.

Melba's Version

2007-05-08T06:29:00.000-07:00

Michelle still woke with tightness in her neck and shoulders Monday morning - hadn't slept well, but that may have been due to sleeping a lot of Sunday after taking the Benedryl and Lorazepam pills, which cause drowsiness and relaxation. It is discouraging to say the least. So I stopped in at Oncology Monday morning to try and get some questions answered - it was BUSY so went on to work to wait for phone calls from the pharmacist, nurse, and social worker. Some questions got answered but not regarding why she is not feeling better. SO, we will definitely find a nurse when we go in for blood draw on Tuesday morning to try for some answers.

On the positive side, she has not had the possible side affects of nausea, vomiting, etc. etc. - still, it's hard to be jumping for joy when she feels lousy. But she is still being more courageous than I would be - gave herself her neupogen shot, which builds up the white blood cells. And she cleans the 2 tubes of the Hickman catheter, which takes scrubbing one's hands for 3 minutes (like ya see the doctors and nurses do on TV before they go in to surgery), iodine cleaning of the opening then attaching the syringe to the Hickman and pushing the Heperin through, making sure that the tube is closed afterward so blood can't escape. It all must be kept almost sterile to keep out any germs or bacteria and most people leave the whole job to the professionals and she's determined to take care of that herself - doing an awesome job!

We will try to keep you up every few days or once a week as time goes on. Keep her in prayer for her body to feel better soon.

First Round of Chemo - Michelle's Version

2007-05-08T06:26:00.000-07:00

The first half of this session of ICE chemo. went fine first thing Wednesday & Thursday morning. The second half didn’t go so well. The hospital didn’t seem to know I was going to be there even though oncology called them the day before & a week ahead of time. My 24 hour infusion of chemo. didn’t get started till 2:30 pm Thursday afternoon.

Starting Tuesday I was feeling tightness in the skin around my neck & chest. It was very constricting feeling & painful. I was given a steroid in the hospital to reduce the swelling & pressure-something about releasing water that was built up. I don’t really know. They think I was having an allergic reaction because my neck & chest were all red too. And they think anxiety had to do with it, so gave me anxiety medication. I sure didn’t get very much sleep overnight at the hospital. There are people waking you up all night long.

I didn’t finish with my last hour of chemo. till Friday afternoon about 4:00-4:30 pm & by the time we had discharge papers it was 7:00-7:30 pm. I didn’t like being in the hospital. It didn’t seem like anyone really knew what was going on with me there. I would much rather be over at the cancer care center where cancer is their expertise. The tightness in my neck only got worse by Saturday afternoon & I ended up in the emergency room for 5-6 hours Saturday night. They gave me the same stuff they did in the hospital. It only works a little bit for a little while & then it’s back again. They’ve had me drugged up for the last few days thinking that would help, but I can still feel everything. I quit taking everything today, so I’m not constantly sleeping. I don’t even feel like I can function with this thing with my neck & chest. I have an appointment tomorrow morning. Hopefully something will be figured out about it.

I don’t know if I’ll be working this week or not. It all depends on if this tightness goes away. If it weren’t for that I think I’d have felt fine this weekend. I started giving myself the neupogen shots Saturday night. Neopogen stimulates the growth of white blood cells. And these are the cells that will eventually be harvested (taken out) for the stem cell transplant. I do not like giving that shot to myself. I start breathing heavy & get hot & feel like I’m hyperventilating & it freaks me out. Last year when I would get these shots I would always be in pain. So far I haven’t had any pain from them. Woo hoo! There’s a plus to report on. =)

First Round of Chemo - Day 2

2007-05-07T11:49:00.000-07:00

Written Saturday, May 5, 12:05 a.m.

Michelle came through the 1 hour chemo on Wed. just fine - and the 1 hour Thursday was ok too, and she was ok yet when I stopped in at the hospital this morning about 9:30. But as the day progressed her neck started swelling and got very red. They think it was an allergic reaction to the chemo so prescribed more pills. Denny stopped in after school and stayed until I got there from work - she did the last 1 hour chemo and was really feeling punk by then.

Just watching the process of getting her checked out from when I got there a little after 5:00 until the time we left sure hasn't left me with a lot of assurance in the medical system - the right hand doesn't seem to know what the left hand is doing. Communication from Oncology to the hospital and over to the pharmacy isn't the greatest so it was a bit discouraging getting all the loose ends tied up to get out of there finally by 7:00pm. There doesn't seem to be a lot of efficiency - is it this way in most hospitals and clinics? Now I know why my boss's wife stayed with him 24/7 through his chemo etc.

It was overwhelming to see and hear all the instructions for cleaning the Hickman tubes, how to give herself the nupigen shots to build up her white count, how to keep everything clean and dry, etc. and keeping track of all the medications she has to take - whew!

Anyway, we got her home and settled in - think she was ready for a good night's sleep.

PS. For anyone interested or anyone who asks where to send donations Michelle has a new 'Donations' account set up at Skagit State Bank for this. The account was just set up Tuesday for this purpose. Hope that helps with any who ask.

First Round of Chemo - Day 1

2007-05-07T11:48:00.001-07:00

Written Friday, May 4 @ 10:40 p.m.

Michelle had her first chemo drug Wed morning at the MV Oncology. She was a little tired as had to get up about 5:00 for training, which Birch Equipment does each Wed. morning at 6:00. She went to work then from 7:00 to 8:30 - did the chemo and went back to work about 11:00 (amazing how a 1 hour treatment always takes so long - no rush to get things going and done). Anyway, she was a bit tired and had a headache, but made it for the day.

Yesterday, Thursday, she had to be at Oncology at 8:00 to start another kind of drug drip for an hour or 2 - then they walked her across the street to the hospital to do the 24 hour drug drip. Again, there seems to be no rush and they didn't get her started until 2:30 (they didn't seem to know she was coming even though Oncology had called them last week and called again on Wednesday - there seems to be some lack of communication here - which isn't too comforting to patients, but I've heard from someone who works there that they are terribly short handed - like 20 positions) - which means she won't be done with that one till about 2:30 today and has to do one more 1 hour drip. Hopefully, she'll be done by 5:00 but we aren't holding our breath. She had lots of visitors all day and evening so had no time to get bored (or get a nap). Denny had a track meet so didn't get home till 7:30 at which time he, Nathan, and I went back – Michelle and a friend were watching a movie so we didn't stay long - just brought her some earplugs, her comforter and some mail. She brought her own pillows - amazing how different hospitals are now days – another friend visited several hours and brought her 8 month old with.

I'll be stopping in this morning to see how her sleep went - she had an air mattress that kept decompressing - (for bed sores) and wasn't very comfortable. And we know hospitals in general aren't very restful so she'll probably hit her bed early - has to work tomorrow so will be exhausted by Sunday. But she's determined to work as much as she can.

The next treatment is supposed to be May 23- here in MV Oncology again.

The Spaghetti Dinner fundraiser is May 14 - Monday 5-8 pm. Sara Rothenbuler, Birch Equipment’s owner, was to send out newsletters to 2000 customers with that info as well as info for the bank account set up at Skagit State for donations. We are hearing of more and more people who are forwarding the fundraiser info to all their friends and co-workers - so we hope it goes well.

Will try to keep you all updated - we thank the Lord for all the encouragement and care being given to her and to us - the Lord certainly gives what we need as we need it - in so many forms from so many people. Not that I would recommend going through any of this kind of thing just to be able to be given all this care, but it is so amazing! Have a great day and God bless you all.