Seattle times

Things are going great here in Seattle. The last week I had more tests. I met with the attending Dr. He said that they cannot find any leukemia in my body (Yipee), so just to make sure they did another bone marrow biopsy on Friday. I think that he enjoys ordering bone marrow biopsys. They are going to run some tests on the biopsy to see if I need a transplant or possibly an injection of Ty T-Cells. It will be interesting to see what they find out on Wednesday. If they do the T-Cells then that means no chemo or radiation which would be good as more radiation may make me glow. If they go the transplant route then I would have to have the chemo and radiation but either way they have me covered. I told my brother Wade about this plan and he said that I need his Ultra Premium blood to cure me. My blood counts have stabilized as I have not had a transfusion in a while.

Things about Seattle that I never knew about. Starbucks is everywhere. Just today I walked out of a restaurant and right in my face was a Starbucks, I am sure that there was another one inside of the Barnes and Noble bookstore right next door. These people are sure hooked on their coffee. But if you try to find a Wal-Mart or even ask someone, your out of luck, you have to search high and low to find one. Apparently coffee is more important than discount goods and clothing. The other thing I noticed today is that everyone has longer hair, not many bald people here as they would freeze, not sure if this is to keep them warm or what. One guy I saw had a comb over and braids, if I can get a picture I will. Maybe this is dual purpose as he could control his tempurature, if he got cold he could comb more over, if he is hot he could just braid it up. I am thinking of trying this out for myself.

I hope all is well at you house.

Casey

Tests and More Tests

This has been a very busy week with tests. I don't think NASA does that much testing on the space shuttle. This week so far I have had these tests, MUGA, X-Ray, Spinal Tap and a Cortasol test and it is only Wednesday.

The MUGA test was kind of different as they put radioactive isotopes into your blood stream, they then put me into another tube (Why is it that medical testing equipment is all tubes). The machine had two parallel panels and a TUBE. This machine was cool, as I laid in it with the Isotopes emmitting whatever they do, it slowly made a picture of my heart and how it works. Lani calls it the sandwich machine.

The Spinal Tap was the most exciting one so far. For this procedure the Dr. had me curl up into the fetal position and hold it. He has to get right into my spine and collect some fluid. Simple plan that went wrong. The Dr. numbed the area and then proceeded to push a TWO AND A HALF INCH NEEDLE into my back, right when he was in the right spot he hit a nerve which caused my calf muscle to contract (like a charlie horse). The Doctor then left the room and returned with another Dr. who was able to get the job done but did go in at the next vertebre.

I met with the Infection Disease Doctors as well. They congratulated me on the fact that I have missed getting two infections. The bad news is that there is Aspergillis (fungus) growing in my lungs. They have put me on two different medications, one to kill it and one that stops the growth. I reminds me of being on the farm mixing chemicals, usually 2,4d as the base and some other chemical mixed in. The good news is the Doctors compared my CAT scans to the ones in Vegas and their has been improvement.

LANI IS HERE!!

Lani flew in on Friday night, I was so excited to see her. I had 6 tickets to the Sonics game but wasn't feeling good enough to go to the game. The cancer center gives out tickets to different events throughout the year. Lani and I are really impressed with the center and the care it gives.

Today I was supposed to have a blood transfusion. In order to do this the nurse has to premedicate me with Tylenol and Benadryl. He gave me the Tylenol and was just starting to push the Benadryl into my port, when another nurse came running in and told him to stop because they had no blood ready for me. This was good as the Benadryl puts me to sleep within 5 seconds. If you do not believe me then ask Aaron Johnson or Nelson Tressler as they witnessed this action.

We then went and toured around downtown Seattle for the rest of the day. Seattle is an old city and is quite beautiful.

Dreaded MRI

Well today was a short day but painful. I had a bone marrow biopsy which was not fun. My backside hurts. I was excited for Friday's appointments, as I only had to see the Dentist and visit with a couple of people. That was the schedule until they changed it at the last minute. I think that Aaron again has something to do with the changes. In the morning I have to get another MRI, if you remeber the last time that I had one it was quite exciting. This will be followed up with a CAT scan. So basically I will spend the first part of tomorrow in different tubes. The MRI will be the worst and the Dr. has prescribed adivant to calm me down. Maybe I will take the whole bottle so I will not remember the MRI. The Dr. said after a couple of pills it is like a couple of glasses of wine. Unfortunatly I have never had a couple of glasses of wine, maybe I should purchase some wine just to see what they are talking about. After the scans in the tubes I then go to the Dentist for a check up, I can only imagine what he is wanting to do. The day will then be wrapped up with a visit with to the nutritionist, most likely I will have to go on a diet and eat Tofu. I will then get a blood transfusion (YUM).

Wade has now gone home and is in good health. That is a good thing and is lined up to donate his marrow around the 27th and they will do the transplant on the 27th. I am very lucky to have two people who match me as most people have a hard time finding one. So a big thank you to my brothers Wade and Ty.

Thanks again to all those who respond to this blog, it is neat to see who is reading about my life.

Casey

Life in Seattle

Well I made it to Seattle. It is very nice and green here, alot different from Las Vegas. I arrived late on Monday night and we stayed at a hotel the first night it was nice. On Tuesday I went to the Seattle Cancer Care Alliance (SCCA). I met the transplant team and they are very well organized. I have learned a couple of things about treatment. I learned that Chemotherapy does not pass the blood brain barrier. They then informed me that they will have to do a spinal tap to find out if there is leukemia hiding around my brain, if so I do not know what they will do to kill that. Most likely they will have to remove my brain and wash it in soap and then replace it!! Also on Tuesday they took alot of blood samples out of Wade and me. I then had to recount the time since I was diagnosed up to today. She, like all other doctors told me it was a miracle that I am alive. She seemed like a good doctor. On Wednesday I had to have a chest x-ray, and a lung function test. I was kind of worried about the Lung test as the last trasplant my lungs collapsed, but I passed the test. I then had to meet with the financial people to make sure that my insurance was in order. They always want to make sure they will get paid. I think that they know more about my insurance coverage than I do. I also had a EKG. The last appointment was with the transplant Dr. He told me that this is no guarantee of a cure. It was the same talk that I have had with all of my other Doctors. I call this the "Cover their butt talk", and they always end up the same with the Doc saying you have nothing to worry about.

The place that we are staying at is extremely nice and very comfortable. We have our own entrance with a basketball court right outside of our door. The people who own this house also have a circa 1950 Chevy truck in the driveway, definately our type of people. So all in all we are very comfortable, and extremely thankful for the apartment to stay in.

We also went to the famous Pikes Market this afternoon and then ate supper at Ivers.

Thanks to all who leave comments, even Aaron Johnson left a comment under the name of his wife Jill. He must be kind of bashful about using his real name. Anybody have suggestions of must see places in Seattle?

Thanks for all of the support that I have recieved from friends and family.

Casey

Two Week Stay

I have spent the last couple of weeks in the hospital (FUN). After the last round of chemo I got a infection which landed me in the hospital. It was my port that got infected so they had to remove the port. They then put a central line in my neck with three ends poking out, I look like I have a small bush growing out of my neck. This is only temporary until I get a new port put in, then I will have a bush growing out of my chest...at least it won't be out in the open. The nurses at the hospital were great. Most of the nurses came by to say hi and check on me. I don't know if it is a good thing to be on a first name basis with the all of the nurses on an entire floor.

We have found a place to stay in Seattle. When we get there is a another story. This hospital stay may have put this trip off until next week. I hope this isn't a sign of things to come.

Not much exciting to report as I have not been anywhere.

The Missed Vacation

Not too much has happened since the last update. The Latest round of Chemotherapy ended on November 3 at 5:30 am. I was home by 6:00 am cooking breakfast for the soccer players the reside at my home. Then we went to three soccer games. It was soo much fun. Sam scored Three back to back goals. Max played a good game. I was only able to watch part of Aubree's game in order to get Sam to his game. That was the best part of my week.

I went to the Doctor on Monday only to learn that my platelet count was one or dangerously low. They sent me to the transfusion center to get 2 units of platelets. While I was getting my transfusion the only thing to do is visit with the other patients which can be very interesting due to my impaired hearing, and lets face it most older people have hearing problems as well. The last thing that is left is watching people. I learned that rubber gloves must be very expensive as the nurse dropped a rubber glove on the floor, obviously not one to tolerate waste she quickly picked it up and put it on. This made me very ill and wondered if this happened when she was working on me.

Tuesday I was low on Blood and had to return to the beloved transfusion center. This time I took Lani with me, being a caring husband I told her to drop me off at he front door and return about 6 hours later to pick me up. She insisted that she wanted to come with me to at least see what this place is like (she can't say I didn't warn her). We got seated in the transfusion room. The people were very diverse. One gentleman had just gotten a new prescription, this brought his total to 27 pills daily. WOW!!!! I feel better about myself. The guy next to my had some sort of a problem with his knees. It is weird how this really helps me to keep my life in proper perspective. I went there every day that week. By the end of the week I was getting sicker and sicker.

Thursday Dr. Sanchez drew some blood cultures to see if I was getting an infection. The cultures would not be back until Monday. Friday I continued my routine of getting blood transfusions. My mother came to stay with me while Lani was in Disneyland. Saturday morning Lani and Brianne packed up to go to Disneyland!!! I woke up with blood shot eyes so bad that it was harder that usual to look in the mirror, and a fever. After alot of convincing, a reluctant and worried Lani went to Disneyland.

Monday, my blood draw was not good and the results of the blood cultures were worse. The blood draw showed that I tested positive for a Staph infection the type of Staph I do not know. My platelet count was 0 (Zero) which is dangerous. Apparently, my brain could have bled and killed me or another organ could bleed and cause unknown amounts of damage. The Dr. admitted me to the hospital. I left the Dr.'s office and waited for the hospital to call when they had a room for me. I was admitted into the hospital at 6:00pm, they started to do blood transfusions at 11:00 pm, apparently they needed almost 12 hours to get ready to do this transfusion. Saturday the Dr. had my Hickman catheter removed as it was the cause of my infection, I will have to stay here until my counts recover. As much as I hate being in the hospital, it has been comforting to have someone check on me closely.

There has been no news in regards to Seattle. We do have a couple of leads for places to stay but nothing solid, again if anyone can help us in this regard it would be appreciated.

Thanks to all who have been trying to help us find a place in Seattle, I know that if there are lots of people looking, we will find something.

Casey