Nov 11 – Progress report

We have just completed an interesting month! After our trip to Eugene it was off to OHSU on Friday for blood tests and dressing change of the PICC line used for infusions and blood draws. After the tests they decided to admit me to the hospital for a “tune-up”! They decided to change blood pressure medicines to try and get my blood pressure up as it really drops when I am standing. I do not have dizziness but the doctors are concerned. I am sometimes low on phosphorous and magnesium which require infusions but most do not require anything other than a visit to the infusion center at OHSU. My liver counts are on the mend so maybe we are almost over that bump in the road. After three days I was released from the hospital but assigned a home care nurse to visit once a week as well as a physical therapist who comes twice a week. I am classified as a fall risk and they want me to use my walker and build strength so I can again walk without the aid of a wheeled walker or cane. The exercises are with 5 lbs of weight on each leg. When Brett and Cecilia came for a visit she wanted to try the weights.  She quickly announced “I can’t move”. I am gaining strength and making a lot of progress. The doctors are pleased with my progress and have approved us to take a trip to California to visit family, giving us a break from the 2 trips a week to the hospital infusion center. We planned to carpool with Roy and Suzanne going half way one day and spending the night at a motel to give me the rest I need. We are looking forward to seeing Nancy’s sister and family as it has been a couple of years since we have visited in Modesto.

We have had many visitors this past month which is always uplifting. We had Tom and JoAnne from Roseburg stop by on their way back from a diving trip in South America. We also had Teri Warford stop by. She retired from DODDS around the same time we did and enjoys living near Flathead Lake in Montana. She spent the afternoon and we enjoyed visiting the Ridgefield wildlife refuge where we enjoyed seeing tundra swans, many kinds of ducks, swans, a coyote, king fishers, We were glad she could stop by for a visit and it reminded us of how we want to get back on the road. We may start to post pictures on Facebook as Teri does, which she recommended. 

This coming week will keep us busy as Brother Greg is coming for a quick visit before heading back to Texas.  He and Geri will spend a night with us before heading to the airport. Of course that prompted a quick plan for a family gathering which we are looking forward to.  Later in the week we will be looking forward to having a group of retired DODDS teachers for a gathering.  Brett was here with Cecilia to assist with some projects for us. We sure do enjoy having him close to help out, he did a great job of making a platform to raise my chair so I can be a bit more able of getting up and about. He also checked out the car and hung a few more pictures for us. Of course we continue to prepare for our trip to California to see family. We continue watching the weather closely as winter seems to be here and we have to pass through mountains on our trip south. Nancy sure hope we do not have to chain up the car on the trip as she now does most of the driving.

August update

June 9 – Progress report

We had kind of a bad week last week. Ray had been getting weaker and sleeping all the time, plus a couple of other problems and we knew the doctor was worried about his liver functions. We had an appointment Friday for lab tests and dressing change on his PICC line. After the lab tests the nurse said we could go home and they would let us know the results. She called just as we got home and said the liver functions were not good and the doctor wanted us to come back for more tests and maybe a sonogram if they could schedule it. She also said to pack for the possibility of being put in the hospital. A little later, as we were about to leave to go back, they called and said "don't come - we can't get an appointment for the sonogram today. Wait to hear from us." So, we stayed home and waited. An hour or two later the nurse called again and asked where we were; she thought we were coming and the doctor was waiting! We told her about the other call and it turned out it was the appointment desk and she apologized for the misunderstanding. So, again we packed up and headed back to OHSU where he had more blood tests and the doctor came to talk to us. He checked Ray out and said he didn't look as bad as his test results indicated (eyes weren't yellow, something they look for with liver problems.) Doctor said he wanted to let us go home, but to call and go to the ER if Ray got worse. He got really weak and tired on Saturday, plus dark urine and it finally dawned on Nancy that these were some of the side effects the doctor said to watch for because he'd started him on a statin for high cholesterol. If that happened he said to stop the statin and let them know. So we stopped giving Ray the statin and the next day he was feeling better. Funny thing was, the doctor called us at home on Sunday and said he'd been reviewing his tests and wanted us to stop the statin! Nancy told him we'd figured that out and he was glad. We had to be back at the clinic Monday morning at 8:00 am for more blood tests and to see if they could work him in for a sonogram. So we got up very early Monday morning and made it early and were able to get the sonogram and blood tests. The doctor came to see us again and said his enzyme levels were improving and the sonogram didn't show anything out of the ordinary. He was thinking it was either the statin causing the problems, or maybe Ray passed a small gallstone that may have been blocking urine without realizing it, since they know he has some gallstones. Anyway, he is doing better and feeling stronger. We went back to the clinic Friday to have blood tests again. The doctor leaves on vacation then, but there will be other doctors and nurse practitioners to see him. He'll have a bone marrow biopsy and tap of the Ommaya in his head to test the spinal fluid. These are standard tests at the end of the first year of the transplant. We just keep going, through all the ups and downs. It can be really wearing at times.

We were so afraid he would be put back in the hospital just before the kids and grand kids arrived from Tennessee, they were scheduled to arrive the 4th of July weekend. One of Travis's first questions was "will Grandpa be at home?" and Kari had to tell him that's the plan, but no guarantees. Kari and family were on the road. She called last night from North Platte, Nebraska and they were headed for Wyoming the next day to visit family and then go on to Yellowstone. They arrived here Saturday.

Brett and Cecilia were over to visit on Saturday and we had lunch as well as helped Nancy get ready for Kari and family to visit, Even though Ray still was not very energetic we had a good visit and felt better with the help Brett provided. It sure is nice to have them near!

We enjoy being home and being able to have several guests stop by to visit. Jo and End from LasVeg

June 9 – Progress report

We had kind of a bad week last week. Ray had been getting weaker and sleeping all the time, plus a couple of other problems and we knew the doctor was worried about his liver functions. We had an appointment Friday for lab tests and dressing change on his PICC line. After the lab tests the nurse said we could go home and they would let us know the results. She called just as we got home and said the liver functions were not good and the doctor wanted us to come back for more tests and maybe a sonogram if they could schedule it. She also said to pack for the possibility of being put in the hospital. A little later, as we were about to leave to go back, they called and said "don't come - we can't get an appointment for the sonogram today. Wait to hear from us." So, we stayed home and waited. An hour or two later the nurse called again and asked where we were; she thought we were coming and the doctor was waiting! We told her about the other call and it turned out it was the appointment desk and she apologized for the misunderstanding. So, again we packed up and headed back to OHSU where he had more blood tests and the doctor came to talk to us. He checked Ray out and said he didn't look as bad as his test results indicated (eyes weren't yellow, something they look for with liver problems.) Doctor said he wanted to let us go home, but to call and go to the ER if Ray got worse. He got really weak and tired on Saturday, plus dark urine and it finally dawned on Nancy that these were some of the side effects the doctor said to watch for because he'd started him on a statin for high cholesterol. If that happened he said to stop the statin and let them know. So we stopped giving Ray the statin and the next day he was feeling better. Funny thing was, the doctor called us at home on Sunday and said he'd been reviewing his tests and wanted us to stop the statin! Nancy told him we'd figured that out and he was glad. We had to be back at the clinic Monday morning at 8:00 am for more blood tests and to see if they could work him in for a sonogram. So we got up very early Monday morning and made it early and were able to get the sonogram and blood tests. The doctor came to see us again and said his enzyme levels were improving and the sonogram didn't show anything out of the ordinary. He was thinking it was either the statin causing the problems, or maybe Ray passed a small gallstone that may have been blocking urine without realizing it, since they know he has some gallstones. Anyway, he is doing better and feeling stronger. We went back to the clinic Friday to have blood tests again. The doctor leaves on vacation then, but there will be other doctors and nurse practitioners to see him. He'll have a bone marrow biopsy and tap of the Ommaya in his head to test the spinal fluid. These are standard tests at the end of the first year of the transplant. We just keep going, through all the ups and downs. It can be really wearing at times.

Brett and Cecilia were over to visit on Saturday and had lunch as well as helped Nancy get ready for Kari and family to visit, Even though Ray still was not very energetic we had a good visit and felt better with the help Brett provided. It sure is nice to have them near! We had several guests during the month to include Kari and family, Jo and Ed Hiramoto from Las Vegas, Ken and Peggy Thomas from Grand Terrace, CA, Marcia and Ray Reass from Bellevue WA, Sydney Richardson from Roseburg, and we took a trip north to Kingston to see Bev Sillerud (a one day road trip for Nancy and I)

June 12 – Progress report

June 12 – Progress report

We had kind of a bad week last week. Ray had been getting weaker and sleeping all the time, plus a couple of other problems and we knew the doctor was worried about his liver functions. We had an appointment Friday for lab tests. After the lab tests the nurse said we could go home and they would let us know the results. She called just as we got home and said the liver functions were not good and the doctor wanted us to come back for more tests and maybe a sonogram if they could schedule it. She also said to pack for the possibility of being put in the hospital. A little later, as we were about to leave to go back, they called and said "don't come - we can't get an appointment for the sonogram today. Wait to hear from us." So, we stayed home and waited. An hour or two later the nurse called again and asked where we were; she thought we were coming and the doctor was waiting! We told her about the other call and it turned out it was the appointment desk and she apologized for the misunderstanding. So, again we packed up and headed back to OHSU where he had more blood tests and the doctor came to talk to us. He checked Ray out and said he didn't look as bad as his test results indicated (eyes weren't yellow, something they look for with liver problems.) Doctor said he wanted to let us go home, but to call and go to the ER if Ray got worse. He got really weak and tired on Saturday, plus dark urine and it finally dawned on Nancy that these were some of the side effects the doctor said to watch for because he'd started him on a statin for high cholesterol. If that happened he said to stop the statin and let them know. So we stopped giving Ray the statin and the next day he was feeling better. Funny thing was, the doctor called us at home on Sunday and said he'd been reviewing his tests and wanted us to stop the statin! Nancy shared with him we'd figured that out and he was glad. We had to be back at the clinic Monday morning at 8:00 am for more blood tests and to see if they could work him in for a sonogram. So we headed out early Monday morning and were able to get the sonogram and blood tests. The doctor came to see us again and said his enzyme levels were improving and the sonogram didn't show anything out of the ordinary. He was thinking it was either the statin that caused the problems, or maybe Ray passed a small gallstone without realizing it, since they know he has some gallstones. Anyway, he is doing better and feeling stronger. We went back to the clinic Friday to have blood tests again. The doctor leaves on vacation then, but there will be other doctors and nurse practitioners to see him. He'll have a bone marrow biopsy and tap of the Ommaya in his head to test the spinal fluid. These are standard tests at the end of the first year of the transplant. We just keep going, through all the ups and downs. It can be really wearing at times.

We were so afraid Ray would be put back in the hospital just before Kari and family arrived from Tennessee. They were scheduled to arrive that coming weekend. One of Travis's first questions was "will Grandpa be at home?" and Kari had to tell him that's the plan, but no guarantees. Kari and family were on the road. They called from North Platte, Nebraska and were headed for Wyoming the next day to visit Charles’ cousin and then on to Yellowstone. They expected to be here Saturday or Sunday.

Brett and Cecilia were over to visit on Saturday and had lunch as well as helped Nancy get ready for the family visit. Even though Ray still was not very energetic we had a good visit and felt better with Brett’s help. It sure is nice to have Brett and Cecilia nearby! I want to get this posted soon and then will work on an update about the family visit. A preview is that all went well and Ray did not need to go to the hospital except for planned tests.  .

July 4th and July events

July 5th and July events
After the events of the week before Kari and family arrived we were ready for a change and we got it. Ray has been getting stronger and is not sleeping so much. The latest blood tests and sonogram show good results. Ray will be going in for more tests the end of July and we will and keep you informed of changes as we learn of them. Recent visit brought news of improving blood tests including liver function improvement. The bone marrow test revealed Ray now has 100% donor cells which indicate the transplant was totally successful. He is still battling host / donor complications the liver and a few mouth sores and skin issues. The diabetes was also brought on by the steroid for the graft vs host, so I now do blood sugar checks 3 times a day and take insulin. I have to be very careful about sugar and carbohydrate consumption. I still have weakened muscles from medications so I use a cane when walking to avoid falls. I also do daily exercises to help rebuild muscles, which is going well. 

We sure enjoyed having Kari and family here. Our town of Ridgefield puts on quite the 4^th of July celebration. Before the “old style” parade that goes on for nearly 2 hours. We had blueberry pancakes and waffles prepared by the grand kids! They were great!  Roy, Susanne, Bruce and Julia joined in the feast. Then we enjoyed the parade before having lunch at home. Some family went back to the center for kid activities (face painting, games, petting zoo, crafts and other events.) Some of us rested before we had an at home barbeque. Charles reminds us that we grill, not barbeque! That evening we walked to the park and enjoyed a great fireworks display, sitting on blankets looking up at the colorful displays that went on for about 45 minutes. Later in the week We traveled to the coast where the grand kids could play on the beach and fly kites. We enjoyed having Brett and Celia able to join us for the family outing.    

June 9 – RELEASED!

On Friday June 8^th we traveled to OHSU (Oregon Health Science University Hospital) for more blood tests to evaluate my Graft vs. Host disease that has affected my liver. I have been taking drugs to reduce iron, increase potassium and magnesium, plus steroids, and lots of fluids to keep the liver flushed. Drinking a minimum of 2 liters a day does not let you get too far from a toilet! Also on insulin for steroid-induced diabetes (seems like it’s always something, as Gilda Radner used to say!) The Medicare coverage for the rehab facility expired on June 17 so we were hopeful to see improvement and be released from the rehab center where I have been for over 3 months now! We travel to OHSU in Portland for the blood tests and Dr. evaluations of progress and changes to my liver. We got off to a shaky start with my breakfast coming late, Nancy running late and documentation for Dr. not ready to send with us. The I-5 Bridge over the Columbia was open but reported moving slow as it was commute time. We did arrive at OHSU nearly on time and the nurses drew lots of blood samples for the required tests and the results showed continued improvement so the Dr. stopped the 1 hour infusion and changed a few medications but did require me to continue drinking 2 liters of liquids a day to keep flushing the kidneys and liver. The best news was the doctor ordered me to be released me from Rehab! Being Friday we expected I might be released sometime the following week. When we shared the news at the rehab facility they said it could take until Sunday or Monday to be released. We decided to go for Sunday if possible. Then on Saturday my day started with the nurse saying I was leaving that day. I called Nancy and she was not aware of the change and indicated it was happening too fast and she was not ready. On further discussion we decided to give it a try as it would be easier to go to church on Sunday morning in Ridgefield Methodist where we were scheduled to transfer our membership from the Roseburg Methodist. We were hopeful of going to Roseburg to attend a gathering but thought that might be a long shot to make the trip.

Sunday morning was a bit stressful as I now needed to take my own diabetes test and we had been trained, but had not yet done it ourselves. Our first attempts kept reporting errors until Nancy noticed in the small print that we were inserting the strip backwards. It worked fine when we inserted the strip correctly! We realized we were going to be short on syringes for a trip to Roseburg and almost cancelled the trip but we both needed to have a trip out of town after being cooped up for 3 months! We decided to go for it. We hurriedly finished packing after church and stopped at the rehab center where we were able to get more syringes. We arrived in Roseburg about 5 PM and luckily everybody was able to stay later. We had a nice dinner and then sat around a fire pit and visited, which was great! Talking with friends and being in a new environment was just what we needed! It felt like we were camping and just the environment we needed. It was not until we were getting settled for the night that we realized we had somehow overlooked getting the diabetes test kit packed. We knew the basic injection needed and knew the warning signs to look for so decided to stay the night and return on Monday as originally planned, with stops in Roseburg and Eugene to check into some financial situations that had been put on hold because of my being in rehab and not able to complete. We were able to meet with the required people on short notice and accomplished the tasks, arriving home about 8 PM, missing the Portland rush hour! The tester was right where I had packed it, next to my chair.  A quick test showed I was in the safe zone and did not require a different dose of insulin at this time. That was a big relief to both of us for sure. You can imagine we were concerned since we discovered we had no way to check my glucose level since Sunday evening. We had a quick dinner and went to bed exhausted after the quick trip to Roseburg and back which is about a 4 hour drive each way. I should mention that Nancy did all the driving and did a great job!

Dealing with changes:

Dealing with changes:

Before my stem cell transplant they told us there might be some “bumps in the road” in the recovery process, but some of them seem more like pot holes. The most recent challenge required returning to the hospital for two weeks (pneumonia and graft vs. host disease in the liver) and then transfer to the rehab center so insurance could cover the expenses of infusions and physical therapy, as home care was not an option. I have had many experiences documented in recent blog entries about life in the rehab center. I am still here and it has been over 2 ½ months!

Last Friday I was scheduled to travel to OHSU for blood tests and Dr. evaluations of progress and changes to my liver. We had noticed that I-5 Bridge over the Columbia was going to be closed from 11 PM until 7AM Sunday but thought no problem as we were not going to use that route until about 8 AM. Imagine our surprise when it was still closed after 8AM. That required a detour to the I-205 Bridge, and back to I-5, adding distance and time to our schedule but we managed to make it without being too late.

The blood tests continued to show improvement and the doctor stopped the 4 hour middle-of-the-night (3:30-8 AM) daily infusions which allows me to sleep through the night, which is sure nice. I still have an hour infusion just before going to bed and the Dr. said I must continue to drink 2 liters of water a day to keep flushing the kidneys and liver. Only problem is the number of times that requires me to pee! They scheduled another evaluation in a couple of weeks, but I remain in the rehab center until then. Insurance benefits run out for rehab June 17^th so Drs. are working on a plan to switch to a pill version before that happens. Of course we are pulling for that so I can go home. Counting hospital time, it’s been over 3 months since I’ve been home, except for short visits.

I take approximately 20 meds a day and Nancy was glad to let rehab take over that task of keeping track and dispensing the meds. The nurses crush the pills and mix them with applesauce or pudding to make it easier for me to take so many at one sitting. They also check my blood sugar and give me insulin. Nancy works it into her schedule to visit daily and often we are able to have lunch and dinner together as well as check out for some change of pace. We can go out shopping or for lunch or dinner or spend some time at home. Last week we were able to visit Brett and Cecilia at Brett’s new place. He fixed a fine dinner for us and we enjoyed spending time with them. Their place is old, and close to the freeway, but has a lot of charm and character, plus big old trees, rhododendrons and other neat older homes in the neighborhood. Cecilia had to show us the “fairy garden” she and her 6-year-old neighbor and “best friend” have been working on. I think we mentioned that Halen is the daughter of an old friend of his from Roseburg days. And her grandparents, Mike and Rosemary, have been long-time friends of ours (35 years).

The weather is getting nicer and warmer and the flowers have been gorgeous this year. We had a couple of big thunderstorms with tons of rain this past week. We watched one storm from Brett’s house and waited for it to let up before we headed home. Cecilia was so excited she was jumping up and down, but said she was excited and scared! She will be 5 next month and she is getting so big, and smart, and lots of fun, of course we are hoping I will be released from rehab next week

CINCO DE MAYO AT REHAB:

CINCO  DE MAYO AT REHAB:
When I  noticed the menu for that day my thoughts were "what were they thinking?": Chow mein, egg rolls just did not seem right on the menu for that day! Then I learned the rehab center was planning a CINCO DE MAYO party for the afternoon as a special event. Turned out to be quesedillas and Odool's alcohol-free beer. Remember, there are many alcoholics being treated here or in other cases alcohol may effect medications. One of the patients got upset about the word beer being used period and would not even accept a root beer soda, then went on a lecture sermon that soda has gas and drinking it could make a person explode!  He was not taking a chance! That patient had water with the quesedillas and other hispanic snacks while most of us enjoyed a cold soda during our Hispanic theme celebration. I can now report that nobody exploded from consuming soda!

Mothers Day: 2011

Mothers Day 2011: On Mothers Day we went to the downtown Vancover Methodist Church as it is close to the rehab center where I stay. We  planned to go to Ridgefield Methodist the next Sunday even though it is a few miles further away. We enjoyed calls from Kari and Brett during the day and a special treat of green curry dinner prepared by Brett at our home as I checked out of rehab for the afternoon to spend time in Ridgefield. Brett made a huge  batch so we had a couple of lunches and Nancy froze some and we will get to enjoy one of our Thailand treats again another day.  We love Thai food and have a favorite restaurant  in Vancouver we frequent when we get a chance.

We had a slight change of plans on Sunday because my PICC line was plugged up and I had to go in to the clinic to see if they could get it unplugged (kind of like a plumbing backup ), other wise I'd have to have a new line put in. We thought we'd have an easy drive in on Sunday morning, but the I-5 bridge was closed overnight and still closed when we came through at 8:00am. The electronic signs had promised that it would be closed all night and reopen at 7:30 am, but they lied! That meant that we had to take a long detour over to the only other bridge across the Columbia and back again. Portland is known as a city of many bridges, but most of them cross the Willamette instead of the Columbia, which is our only way to cross from Washington to Oregon. They have been working on a plan for another bridge across the Columbia but it has taken years in just the planning stages and may take a few more, due to funding problems and agreement between the two states about design, cost-sharing, etc.

Fun visiting with friends

We've also had a couple of fun visits with old friends from Roseburg days recently. Former music teacher at Hucrest Elementary, Tim Buschert, who retired and moved to Vancouver area about the time we did, stopped by for a visit with us at the facility. Then last Sunday we went to the downtown Presbyterian church, which is only a few blocks from here, and saw Doug and Mary Ann Glover. We enjoyed catching up with them and had a nice visit. We had gotten together a couple of times and plan to do it again when Ray gets out.  We were sorry when Dan and Sherry Faught had to cancel a visit last week because his mother was very ill. We'll hope to see them another time. Rosemary Brinkley is coming up for their granddaughter's first birthday soon and hopes to get over to visit with us.. An interesting aside: Brett was surprised and happy to learn that his new neighbor in the duplex he moved into is Jocelyn (Brinkley) and her husband and 2 little girls! They had known each other as little kids in Roseburg, but hadn't seen each other in years. What a small world it is! Cecilia and their daugher, Halen, are becoming good friends and having fun playing. Brett is enjoying being within walking distance to 3 nice parks and a nice shopping area. He can also walk or ride his bike to work or walk to the MAXX station and be at work in minutes cutting down on commute time as well as expense.

Farman family outing

Farman family outing - We had several things to celebrate so we arranged a gathering at  a local seafood restauramt running a special deal. We ended up with a party of 13 to celebrate nephew Patrick's Eagle Scout Award, niece Sarah being accepted to nursing school, Brett's divorce settlement being completed, nephew Robert and Jean purchasing a house, and Nancy finding Ray's wedding ring, wallet and keys that had been misplaced for over two months! That last had us stressed and going crazy, of course, so there was much relief and laughter when they were found. Lots of conversation at the gathering, sharing experiences and we enjoyed a great evening. Now a full Millhollen / Farman clan gathering is in the works but not sure the restaurant could handle that group!

Exercise at rehab:

Exercise at rehab: There is a small gym with exercise equipment we are encouraged to use after being trained. Of course the major concern is about falls and possible re-injury. There is a great nature bike walking trail near the facility that we enjoy taking. Brett, Celia, Roy and Suzanne, Bruce and Julia have gone with us a few times and we enjoy visiting as we walk the trail along the creek. We meet a lot people out walking dogs and children and we sometimes get a chance to visit with them but usually it is just a friendly hello or smile. One interesting encounter was watching an older Volvo arrive with two dogs to be walked. One dog was a small, quiet and well behaved one. The larger one was hyper and barked loudly and constantly as the man encouraged it to quiet down and stop pull[ng. We arrived back at the parking area about the same time to see him load the dogs and depart, with the big dog still barking loudly as the car departed. We were glad we were not traveling with them. What is funny is that a day or two later Nancy was driving in town and was startled by a dog barking in car pulling up beside her. She started laughing when she recognized the old Volvo and the same two dogs.  That silly dog seems to bark enthusiastically at everything! man must be going deaf!

Food at rehab:

For the most part the food is decent. They serve a big breakfast and lunch and a soup and sandwich dinner, kind of like the European way. They are not gourmet but usually varied and generally tasty. We have a menu to make our daily selections for the week with some alternate choices and there is something different each day. Selections range from American favorites, Hispanic, Irish, Chinese, Asian to Italian, Each meal usually has a salad, vegetables, bread and fruit or a desert. Guests can have the meal for $3 so if Nancy likes something on the menu I can order her a meal. Other times she eats at home or picks up something at a local fast food or deli and eats with us. She comes every day, about lunch time and spends the afternoon and early evening. We also can get snacks, ice cream and fruit regularly.

In recovery care and headed home before too long.

Being in the rehab unIt also helps knowing that I am in the temporary care unit and should be going home before too long. I will certainly have more sympathy and understanding for people in long-term care from now on. A sad situation happened this week. We had gotten to know a local couple: the husband had a stroke and was having memory problems as well as mobility problems. His wife, son and daughter-in-law visited regularly. They also have a special needs daughter who had lived with them but is now in a group home doing well. One day he announced his wife was also in the hospital with gall stones. The next thing we learned was she had surgery with complications and she passed away. Now the family is trying to rebound.

People and life at the rehab/nursing facility:

People and life at the rehab/nursing facility: For a while I had the room to myself and then they assigned me a roommate who announced that he was a bi-polar binge alcoholic. He was here because he went on a binge, fell and cut his head on a wine glass and nearly bled to death. He was a nonstop talker who seemed to be an expert on everything from logging to religion. It was rather humorous when he attempted to teach the mentally challenged at the facility to play a special solitaire game. Many of the residents have had strokes or head injuries and have trouble playing Bingo. There is a woman who was an only child who spent twenty years in the Navy. She retired to the long term section of the rehab center and talks about how those years in the Navy were the best years but cannot remember much about them. She likes to color and play Bingo. There is a young man about forty who was unloading a car top boat which fell on him and broke his leg severely. They tried to repair it but infection set in and they had to amputate his leg, so he is here to get prosthesis and learn to walk with it. We also have many in wheelchairs. Fortunately for me, that first roommate was only here a week and then was released. My current roommate is much more compatible and “with it”. He is a 75-year old who fell down the back steps when his girlfriend’s dog tripped him up and sent him flying down the steps, breaking his hip. The first couple of days he was on pain pills and a little disoriented     The break has stabilized now and we get along fine. He’s a bit of a character and we laugh a lot. Also have a couple of neighbors we enjoy. The facility tries to provide a lot of activities. Nancy and I went on one such outing and it was amazing to see how long it took to load the wheelchairs and walkers for participants on the van for the trip to a nearby tulip garden. We spent more time loading and unloading than at the garden so it is unlikely we will try another trip out of the rehab that way. Those that took the trip talked about the outing for days. Since I can check out for a few hours at a time, we prefer to go on our own adventures. I started out using a walker and have graduated to a cane. We also have the use of an electric scooter from my sister-in-law so we are able to get out on a beautiful paved trail close to the facility. It is a trail along the Burnt  Bridge Creek. We take turns with the scooter so I can walk to build up my strength. It is great to get out in nature, along the nice creek and see the birds, flowers, etc. Some of the locals also have horses and chickens. When Brett brought Celia for a walk with us she enjoyed feeding a couple of the horses apple and carrots. For some of the residents the group outings are the only way out of the facility. One big highlight is a trip to Wal-Mart. You would not believe how much they look forward to that trip! Anyway, a sense of humor helps while I live here. Kind of like dorm life with interesting people but I need to be back to the rehab center by midnight or it affects insurance coverage.

We hit another bump in the road…

We hit another bump in the road… Before my stem cell transplant they told us there might be some “pot holes” in the recovery process. The most recent challenge required returning to the hospital for a few days when graft vs host disease attacked my liver. That is when my cells are fighting with the donated cells. I went to the hospital again in Feb./March for two weeks with pneumonia and then they transferred me to a rehabilitation center for physical therapy and continued infusion treatments for the liver problems. I had a liver biopsy and learned I had high iron, low phosphorus, low magnesium, and a need for some antifungal meds. I have a one hour infusion just before going to bed and then a 4 hour infusion starting at 3:30 AM that finishes just before breakfast. I still take about 20 pills a day and the latest blood tests show blood levels are returning to normal. I do have insulin checks because high blood sugar is caused by the steroids I am on. The blood counts and insulin counts are leveling out and stabilizing and the doctors hope this diabetic situation will disappear as they decrease the steroid dosage and my liver returns to.normal. I will be posting  a few more updates with more details in the next few days...

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.