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

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

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

Fun, right?!

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

The nun hat ice pack. Helped a bit.

Cleaning out the tubes with saline.

There it is! First day 6.42 million stem cells.

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

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

Lovely fruit display from Covenant Offices (where Tricia works)

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

Tricia and Diane S., our wonderful Blue Team Nurse

Michelle and Eric H., our social worker

Day after transplant, Phong, Michelle, and Jim

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

The new site is:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2008-July 24-transplant pushed back 2nd time

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

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

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

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

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