23 Update - Sorry it is late

It's a good thing we enjoyed our dinner out on the 7^th, because the next day I had a high fever and ended up in the ER again and was transferred to OHSU for another hospitalization. The high fever continued for 2 days and finally broke. Again, they couldn't locate the cause, but released me on Monday the 11^th after my fever had been normal for a couple of days. By that time Kari and family had left for their drive back to Tennessee. They needed to get back home because Charles started school the next week. Ray was a little “bummed” because he ended up in the hospital during their stay, but we reminded ourselves that we had had a great visit at home for 10 days, and the kids were able to come visit in the hospital room this time, so they could see where Grandpa was staying. They got a kick out of wearing a gown, mask and purple gloves.

I only got to enjoy about 3 days at home, while my doctor ordered a bunch of tests because of some problems I was still having. Ended up back in the hospital for another week, with many neurological tests, infectious disease tests, etc. They found some small blood clots in my leg and a couple in the lung (peripheral), so I am now on blood thinner. It seemed like there was a parade of doctors for several days. I didn't have any more fever, but was continuing to be weak and unsteady. One good thing was that I was next door to my original room (Dec/Jan) and had the same gorgeous view of the city and Mt. Hood. Unfortunately we've been having a cool, wet spring and early summer, so we only got occasional glimpses of the mountain. We did have a funny incident when the food service lady accidentally poured a vanilla milkshake all over me, the chair, table and floor. We had a good laugh and helped her clean it up as she apologized profusely. She was so thankful that we were gracious about it that she insisted on buying our dinner, so we enjoyed a wonderful dinner our last night. They finally released me again on the 21st with some new meds.

June 24 – Surprise at OHSU Visit

We were headed to the outpatient clinic with a little apprehension since my temperature seemed to be up. That means the possibility of a hospital visit. Darn, our suspicions were correct and we were admitted Friday afternoon. That was disappointing as we expected to be home when the Pavlik family came to our area for short overnight visit on Sunday. They started pumping me up with more antibiotics and taking blood samples, while Nancy was putting on miles rushing home to get the house ready for guests and I concentrated on getting rid of that temperature so I could be released. Much to our surprise the doctors sent me home Sunday morning so we had a great time visiting with Terilyn, Mark and Mackenzie on Sunday afternoon and Monday morning before they had to hit the road to visit a few more colleges that Mackenzie was interested in. We did not get to see Zachary who had a summer job or Nathanial who was attending a soccer camp, but maybe we will see them in a future road trip. I have lost a lot of weight and have to be careful when out in public to be sure my belt is cinched up tight to keep my pants from slipping down. I am being weaned off of many of the pills and hope that will allow me to regain some of my muscle and strength that seems to have left my body. I get around slowly and usually use a cane since my strength and balance are somewhat compromised. It is nice to be down to only two visits to the clinic a week and we look forward to some diet restrictions to be lifted as well, as I pass the 60 day mark of the transplant. We have had to avoid crowds which include restaurants for far too long. We had two more visits to the clinic during the week and then had a short but wonderful visit with Carol and Lou Brewer for lunch on Saturday as they passed through with their granddaughter, headed to Olympia, Washington to visit their son and family. Our friendship with them goes back to high school days for Nancy, and our wedding for Ray (45 years ago as of June 18!).

June 19 - Bump in the road update

On Friday, May 20, we headed for the outpatient clinic, fighting the morning commute which Nancy LOVES (not!). Since she has been doing the driving, she's had a crash course in heavy commute driving in Portland. So far we're surviving that and she's doing very well. I'd been having fevers for the previous few days so they ordered more tests and, with the weekend coming doctors decided I needed to be in the hospital. We spent the rest of the day waiting for a room and were finally checked in by dinnertime. We spent over a week in the hospital going through lots of tests and changes in medications. While checking for the cause of my fevers, which were going up and down, they pumped me with antibiotics and ran more tests. The doctors say this sometimes happens and they aren't always able to pinpoint the cause but but this time in checking a small rash spot they decided I was having some host versis donor reaction and started to treat the condition. They said most patients hit a couple of these "bumps in the road" along the way and they didn't seem to be overly concerned. We were glad to be released from the hospital but the stay left me drained of energy. They had been giving me steroids to help fight the host vs donor reaction and we couldn't figure out why I kept getting weaker! Nancy asked the right question when she said I thought steroids bulked you up. That is when we learned that there are two types of steroids. Athletes sometime do bulk up on steroids but the type I was getting quickly suck muscle mass and tone out of the the body leaving you very weak and all I wanted to do was sleep! They want a little graft vs host reaction to insure the new stem cells get established as the dominant stem cell. With the conditions improving they are gradually removing me from the steroids. I can tell the difference in energy and feel better now that I am improving. They say this often happens about the 60 day mark which I am now approaching. It's a long journey, but my white counts and platelets are going up and blood tests show I'm headed in the right direction. As I approach day 60 (mid-June) some of the restrictions should be eased like, I may be able to go out to restaurant which I have not done since December. I would still be on a low-bacteria diet which means no fresh fruit or vegetables. At 100 days (latter part of July) I should come off the low bacteria diet and less restrictions about germs, crowds, etc. Right now we have been reduced to hospital outpatient visits about twice a week, which is nice. Next comes once a week and then once a month and finally every month or two for until eventually maybe once a year. That is what we are looking for so we can do some more travel adventures.

Our last stay in the Hospital had us on the opposite side of the unit so our view was on the back side, without the view of the city and Mt. Hood, but we have a pleasant view of houses, hillside, blooming rhododendrons and dogwoods, and the sunset (when the sun was out). We enjoy watching people and cars coming and going. One interesting sight is the med-evac helicopters coming in for a landing on top of the building next to us at the emergency room heliport. We watched a variety of helicopters, including a huge Coast Guard helicopter. They didn't come that often and the noise wasn't bothersome.

We have confidence in the doctors and enjoy the nursing staff and their sense of humor like writing "Welcome back!" on my event board. Everyone is so friendly and encouraging. The stem cell unit is almost like a family.

As an added complication, we were in the process of selling the house in Eugene, which we had purchased from my mother a few years ago. We were very happy to have 3 offers in the first week and accepted one. It's been a challenge trying to sign papers back and forth from Eugene. Brett has been helping us by e-mailing the papers back and forth for us. It's a great relief, of course, to have a sale pending! Latest news is that the house deal closed and the new owners should be moving in now. Recently we made the trip to Eugene to finish removing the last of my Mom's items. We sure are thankful for brother Roy and step brother Gary and his wife, Anne who were indispensible as we cleared 30 some years of accumulated items. You do not even want to know what our 3 car garage now looks like! We are sorting and donating all the time and it hardly seems to make a dent yet. When I'm stronger we'll be able to really get serious.

May 24 - Another Bump in the road

On Friday, May 20, we headed for the outpatient clinic, fighting the morning commute which Nancy LOVES (not!). Since she has to do the driving, she's had a crash course in commute driving in Portland. So far we're surviving that and she's doing very well. I'd been having fevers for the previous few days so they ordered more tests and, with the weekend coming, decided I needed to be in the hospital. We spent the rest of the day waiting for a room and were finally checked in by dinnertime. Am in my 4^th day here and they're still looking for the cause of my fevers, which go up and down. They're pumping me with antibiotics and running more tests. The doctors say this sometimes happens and they aren't always able to pinpoint the cause but we hope it will resolve itself. They also say most patients hit a couple of these "bumps in the road" along the way and they don't seem to be overly concerned. It's a long journey, but my white counts and platelets are going up and I'm headed in the right direction. I'm at Day 39 and they say at Day 60 (mid-June) some of the restrictions should be eased (like, I may be able to go out to eat, though still on a low-bacteria diet.) and at 100 days (latter part of July) I will be off the low bacteria diet and less restrictions about germs, crowds, etc.

We are in a different room, on the back side, without the view of the city and Mt. Hood, but we have a pleasant view of houses, hillside, blooming rhododendrons and dogwoods, and the sunset (when the sun is out). We enjoy watching people and cars coming and going. One interesting sight is the med-evac helicopters coming in for a landing on top of the building next to us, the Emergency Room heliport. We've watched a variety of helicopters, including a large Coast Guard helicopter. They don't come that often and the noise isn't bothersome.

We had hoped to be out by mid-week, but not sure now. It's hard being here again and not knowing what's going on, but we have confidence in the doctors and enjoy the nursing staff and their sense of humor (like writing "Welcome back!" on my event board.) Everyone is so friendly and encouraging. This unit is almost like a family.

As an added complication, we are in the process of selling the house in Eugene, which we had purchased from my mother a few years ago. We were very happy to have 3 offers in the first week and accepted one. It's been a challenge trying to sign papers back and forth from Eugene. Brett has been helping us by e-mailing the papers back and forth for us. It's a great relief, of course, to have a sale pending! `

Mothers Day and Stem cell update...

This year Mothers Day proved to be a bit different. We spent a quiet day at home after a busy day in Eugene on Saturday getting Mom's house ready to sell. Roy went down with us and we appreciated Gary and Anne coming over to assist as we finished the sorting, meaning lots of trips to the Goodwill Store to make donations. I was mostly in a supervisory and sorting capacity since I needed to sit a lot. We met with the realtor just before leaving Eugene and it should be listed now. We are hoping for quick and easy sale but realistically that has not been the recent history of house sales. We priced it aggressively, hoping to find a buyer. Sunday was Mother's day and it seemed like a laid back day most of the day. Brett came over for a visit and of course we had a few Skype calls from family. After dinner we were preparing to have some ice cream when we remembered it would be a good idea to take my temperature. It had spiked to 101 and instead of having ice cream we were packing for a trip to the emergency room. Upon arrival they started running blood and urine tests trying to find the source of what was causing the temperature. Brett followed us and stayed with us until after midnight. Then about 1:15 AM they decided to send us home as we had an appointment Monday morning at the outpatient clinic. Since I now am regaining my immune system my body is more able to fight small attacks. Monday morning came real early as we did not get home until 2 AM and had to hit the road about 7 AM. We slept a lot of the rest of Monday. We are glad we were not admitted to the hospital Sunday night! Monday blood tests showed counts are continuing to rise which is good news, The bone pain is something I wish would go away. It comes with stem cell transplant but it makes it very painful to stand or sit for very long, and my walking pace has really slowed down. We were told the pain should be going away soon. We sure hope so. I have a couple more posts almost ready and hopefully they will go up tomorrow, One is of Bertha's Memorial service and the other is local adventures.

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.

March – Visitors in the Hospital.

Spending a lot of time in the hospital can be rather boring so having visitors is a special occassion. One day seemed like a Roseburg reunion as The Brinkleys and Glovers were there the same day it was a reason to celebrate. You can be sure we had a lot of fun visiting that afternoon. Of course it is always nice to have family stop in as well. My brother Roy and son Brettt check in on us frequently and brother Bruce brought his family by one day. We hope the hospitalization stays are behind us now but on this journey we have been advised to expect bumps in the road which means we are not out of the woods yet.

Treatments continue

After returning from Eugene we had outpatient appointments on Tuesday for a bone marrow test. On Thursday we returned to the hospital to learn the results and with blood counts low and some leukemia cells still present, it was decided to re-admit Ray to the hospital to participate in a trial drug study to seek out the remaining leukemia cells. Many tests were completed and he qualified to start the new treatment on Friday. It has less side effects than earlier chemotherapy and hopefully will bring the leukemia into remission so they can try stem cell replacement which has been very successful in keeping Ray's type of leukemia in remission. The first picture shows Ray and brother Roy enjoying the view of Portland and the Willamette River, the second picture, shows Ray's new look after losing his hair. During the week in the hospital an Ommayo Reservoir surgery was completed, As an outpatient we return for treatments 2 or 3 times a week rather than being confined to the hospital. Of course we love being at home where we can enjoy our view, watch our birds and squirrels and enjoy the comforts of home.

Last visit with Mom

Ray celebrated his birthday in the hospital and the staff did all they could to make it special, even providing a cake. Shortly after, the doctor team pumped him up with antibiotics and platelets so they could release him early so he could travel to Eugene to see his Mom who was now in Hospice care in the hospital. On Saturday, brother Roy and Suzanne arrived with a comfortable van to provide transportation to Eugene. It was wonderful to see my mom, with my three brothers as well as many family members there. Of course we all wished it was under more happy circumstances, but we did have some special moments and a moving final good-bye from Mom to her four boys. We spent the weekend at the house but it was not the same without Mom there. She slept most of Sunday and passed away Monday. and though we miss her we are so glad her suffering is over and cherish the wonderful memories she left us.