Cold and Wet! + Medical update....

We have been isolated to the hospital or house much of this spring and we have been hoping for warmer weather to get out of the house. My treatments seem to have affected my tolerance for cold. When outside I tend to want a heavier coat than I used to and inside I sometimes opt for a warm fleece. The April weather has not been good for my decreased tolerance of cold. Our weatherman has shared that this is the coldest and wettest April since 1956. We have even had several days of snow. Of course the spring skiers are happy but we are ready for warmer temperatures. We're tired of having to scrape the car windows many mornings when we leave for the clinic. Last weekend we had only our 3rd day this year of a day above 60 degrees! Then this week it was cool and rainy all week. The pictures included here were not taken in winter, they were snapped in April. It is not totally unheard of to have a snow in April but the lack of days above the 60 degree mark is very unusual.

Yesterday's doctor appointment brought good news: my white cell counts are headed up and we no longer have to make the daily 50+ mile round trip to the hospital outpatient clinic. That daily trip in rush hour traffic has not been fun! Today is our first day off since before the transplant and we are really enjoying the release time (kinda like having a snow day when you were a kid...or a teacher!). We will now go to the hospital 2 or 3 times a week for blood tests and appointments for the next month and a half or so. That sure is better than 7 days a week! I still need to be very careful about exposure to germs which means staying out of crowded public places and remain on the low bacteria diet which means no restaurants. I may be released from that restriction around mid-June, and will finally be off of regular monitoring and restrictions about mid-July, a date to look forward to! We will be posting more updates when we get news, !

Stem Cells infused...

As most of you are aware we have been on a count down to stem cell transplant This has involved a lot of doctor appointments as well as dental appointments to be sure my body was in the best shape possible for the transplant. We sure were thankful for the transplant team who kept pointing us in the right directions at the right time. They located a donor (43 year old male, probably from Europe, but won't know for sure until records are released in a couple of years. It is a legal requirement of donor system.) I have been meaning to get this update posted but the chemo and radiation treatments seemed to take all my strength away just as predicted. The hospital suggested using my blog to keep people informed and now with some strength returning I will see if I can get the update posted. Zero day (April 15) found us headed to radiation for a full body treatment in preparation for the stem cell transplant scheduled for later in the day. Interesting process. Nancy was able to snap a picture of me prepared for the full body radiation, but the monstrous equipment is not shown. I stood in the frame twice for about 8 minutes as they do front and then back side of the body (I felt like a piece of toast!). I felt nothing and all went well. Then it was off to OHSU admissions desk where Brett was able to join us until my room was ready. We were anxious to get started but learned that the plane with the stem cells was delayed, so process was delayed until evening. We waited patiently for the cells to arrive and be prepared for transplant. The infusion process started about 10:30 PM with the stem cells looking much like blood, but a nice pink color. They kept a close eye on me as the infusion progressed, checking my vitals every 15 minutes the first hour, once an hour the rest of the night. The infusion process was completed about 2:30 AM. Since no complications developed, I was released from the hospital about 11:00 AM Saturday and we enjoyed going home for some lunch, followed by a rest as neither of us got a lot of sleep the night of the process. I am scheduled for daily 8:30 AM appointments at the outpatient clinic for vitals and transplant follow-up for the rest of April. The next couple of weeks I have to be really germ careful as my immune system is very near zero from the week's chemotherapy and radiation which is to give my new stem cells the best chance of getting established. The fear is infection or host vs donor complications where my blood cells could decide to attack the new donor cells which would not be good. We need to be within 30 minutes of the hospital for some time yet... Changes in my system or temp over 100 means we head for the hospital. If all goes well they will reduce daily visits to 2 or three times a week. After I reach the 100 day threshold they will start to loosen up outpatient visits even more. Then maybe we can return to a more normal life style.The stem cell replacement was almost anticlimactic, but everyone says we should be celebrating, which we did by having ice cream after dinner last night. The nurses wrote “Happy Birthday, Day 0” on the dry-erase board! We are now up to Day plus 3 . It is considered a birthday as I now have new stem cells which could change my blood type and I will have to train my new immune system much as a new born baby. We were doing a countdown to Transplant Day and now begins the count-up as we progress toward me building new cells. I have many new medications and a calendar to help us organize them.

April 15 – Memorial for Mom -

Just before the stem cell transplant preparation we had a memorial service scheduled in Eugene for my Mom. It was nice to get family and friends together to celebrate Bertha's life. It was a very nice service and lots of kind words were shared about my mom that left all of us feeling good. It was a busy weekend at Mom's place as we moved items out of the house to new homes. We were able to fill two vans and a large U-haul trailer with items headed north. Nancy managed to snap a few pictures at the church but somehow forgot to charge the batteries so missed some. We did get some of pictures of family like Michael, Denise, Roy and Kate – Ray, Brett, Bruce and Patrick at the church as well as long time friend Virginia and her daughter Martha before the battery quit. We had to wait until Greg and Geri came to our house to capture a picture of them.I have shared the pictures we were able to get below...

Preparation for Stem Cell Transplant

We continue to enjoy our time at home where birds and squirrels help keep us entertained and distracted from our current housebound status. One day we had a bit more excitement when a coyote decided to chase the free range chickens next door. We tried to distract him but he was successful in capturing a chicken forhis dinner. Sorry it happened so quickly we did not get pictures but here is a picture of a coyote caught a short distance from our home. Here is a picture from our sun room showing the chickens we enjoy watching.

Recently one day started early when I woke up to go to the bathroom and got actively ill. This put nurse Nancy into action with digital thermometer. When it registered 102 we were off to the emergency room at 3:30 AM knowing it probably was our entrance ticket to a room at OHSU and it was. We were in the emergency room until afternoon when they had a room ready for me. It didn't develop into anything serious so I was out in about 3 days. In the picture to the left our house is the one on the one on the left. The open area to the left of our house is the site of the home range chickens we showed in the picture above.

We are still trying to get things completed for the transplant now scheduled for April 15th. It has been a real challenge getting dental work and many special tests, but the OHSU transplant team is fantastic at assisting us. After my release we watched a lot of March Madness basketball... Of course we are disappointed that the west coast teams of Washington and Arizona were out, but glad to hear Kentucky was in the final four. We know the Tennessee crowd supporting Kentucky were thrilled as well. We pulled for Butler but they were just outgunned in the final.

The oral surgeon removed my remaining top teeth as there was risk of infection during the transplant. Dentures will have to wait until immune system returns to near normal. We are now in preparation for my stem cell transplant on the 15th. On Sunday I will start 5 days of chemo infusions, and on the 15^th I will have Total Body Radiation and then be admitted to the hospital for the stem cell transplant (basically a blood transfusion) and overnight stay. By the way, my donor is a good match, a 43-year-old male, international. (We chuckled when the doctor told us there was a marker for possible infection by Jakob's Kreuzfeld, or Mad Cow, disease, so we figured he must be in England or Europe. We are also considered risks and cannot donate blood because we lived in Europe for longer than 6 months! We're not really worried...) We have a shopping bag of drugs and books of directions to read. Biggest worries are rejection of donor stem cells and infection since my immune system will be near zero from chemo and radiation treatments. The first 2-3 weeks are the most critical, but there will be 3 1/2 months of almost daily clinic visits and monitoring, with most likely a hospitalization or two. We won't be going far from the hospital during that time and have to be careful of germs, dust, dirt, mold and such. Also will have a low bacteria diet. We will try to keep friends and family informed by posting to our blog. We try to keep a positive attitude and just take one day at a time as we deal with the little bumps in the road of our current Leukemia adventure. This Saturday we will be in Eugene for the Memorial service for my Mom, but back to the clinic on Sunday to begin pre-transplant chemo.