Lights Out for Earth Hour

It was a cold rainy day yesterday, exactly the kind of weather we expected to experience in Seattle. Our day started with a trip to the grocery store. We have two stores a short drive or longish walk from the apartment. One is a QFC and the other is Whole Foods. Both have great produce and baked goods, an extensive deli and a large section of beer and wine. Whole Foods focuses on organic and locally grown produce and has an eye-popping variety of ready-to-eat soups, sushi, curries, salads and stews available. I imagine the store must bustle with commuters at the end of the work day, all stopping to pick up supper as they head home. Sadly, Arnie must completely avoid cheese, meat, salads, cut fruits & veggies from a deli. No sushi for him. He also has to avoid foods from "reach in" or "scoop" bulk food containers. No nibbling on the free samples set out to entice shoppers either. Arnie's self-control has to be set on maximum when shopping at Whole Foods. Here's why......

Arnie continues to feast on lots of different yummy pills each day. Among them are three different types of immunosuppressants: prednisone, tacrolimus and mycophenolate. His recent stem cell transplant and these medications put Arnie at an increased risk of infection including food borne illnesses. For this reason, the SCCA clinic included a food safety class as part of our early orientation. They reminded us that bacteria and other organisms exist in most common foods. Most of these organisms are of little risk to an average healthy person, however Arnie is currently not in this category.

The food safety class reviewed lots of useful, practical advice. Most of it was information our mothers taught us when we learned to cook. (Thanks Mom Bernice & Mom Doris. We miss you.) The class emphasized the importance of good hand washing and thorough cleaning of counter tops and cutting boards. We also learned Arnie's meals must be well cooked and left overs must be refrigerated quickly and kept for a maximum of 72 hours. After washing up the dishes and cookware, the kitchen must be cleaned using a dilute bleach solution.

We also learned about the "SCCA Immunosuppressed Diet" which Arnie must follow until he is off all his immunosuppressive medications and feeling well. This will be for the next year at least. We were given examples of foods that are safe to select and others that should be avoided. Here's an overview:
- Dairy Foods: Pasteurized milk & milk products and commercially packaged hard & semi-soft cheeses are OK. Soft cheeses like feta and brie must be cooked before eating. Arnie must never eat blue cheese or cheese that contains veggies or herbs. Any mold spots on the cheese and its in the bin.
- Meat: All meat, poultry, fish and eggs must be cooked until well done. No rare steaks or soft boiled eggs for Arnie. Cold cuts and hot dogs must be heated until steaming before serving. (Mmmmm. A steaming hot bologna sandwich.....) Lutefisk is verboten.
- Entrees & Soups: All well cooked entrees and soups are acceptable. In fact, most of our best meals have been slow-cooker soups and stews.
- Fruits & Vegetables: Just listen to your Mother and eat your fruits and vegetables but rinse them well under running water first. This includes frozen produce, produce we plan to cook and produce that will be peeled (such as bananas, melons and oranges).
- Breads, Grains & Cereals: All bread and baked goods, cooked grains and cereals are acceptable. Arnie must cook Edger's home ground oats before eating them.
- Desserts: All homemade and commercially baked cookies, cakes, pies and puddings are acceptable. Cream-filled pastries are acceptable if refrigerated or shelf-stable. Yeahhh!!! Ding-dongs & Twinkies are OK!!

Enough about food already? We'll tell you more another time.

Last night we celebrated Earth Hour by joining millions of others and turning off our lights. We climbed to the roof and watched the Seattle space needle lights go out. Later, we played a game of Scrabble by candle-light. Many thanks to my friends from work who thoughtfully included a candle in our SCCA gift bag. Arnie claims he won the game but it was pretty dark in here. Where did he come up with a word like taiga anyway? Perhaps his brain is becoming less mushy already.
Thinking of you all.
Arnie & Brenda

Great enGraftment

Today is day +31 since Arnie's transplant. Though he has good days and bad, we can definitely see improvement when we look week to week. Each Monday, we see he has made progress compared with the week before. His appetite is much better and his GI distress is a frequent but not constant problem. His rash is gone, but itching sometimes keeps him up at night. His sleep continues to be disrupted and fatigue is a common companion.

But....good news today! Arnie had a bone marrow biopsy on Friday. The biopsy tissue was examined for engraftment and chimerism. The SCCA Laboratory determined how much of the marrow had Arnie's 'tired old' cells and how much was from his stem cell donor. Yahoo!! 100% of the cells collected were from the donor. This is very, very good news indeed!! Great engraftment Batman!!

Yes, the stem cells from Arnie's 20 year old donor have definitely moved into Marrowville. Arnie has welcomed them with open arms and they have selected the best bunk-beds to settle into. The donor stem cells have increased Arnie's infection fighting white blood cells and improved his platelet count to ensure his blood will clot properly. His oxygen carrying hemoglobin is also doing just fine, thank you very much. This is all good news. Like all 20 year old males however, the donor cells have dropped their backpacks at the front door of Marrowville and left their shoes scattered about the entry way. They haven't made the bed in ages and their dirty clothes are lying on the bedroom floor. This may be why Arnie developed GVHD (a rash due to graft versus host disease) several days ago. With prednisone on board, the donor cells are starting to behave like better house guests.

Arnie and I have also learned a great deal since moving into our apartment here in Seattle. The Union Bay Apartments have served us very well and I have absolutely no hesitation in recommending them to others. Apartment living is never-the-less an adjustment after being a home owner for many years. As an example, I forgot to pay the rent at the beginning of March! There are other little annoyances. We have to run the range hood every time we make toast, fry food or bake anything to avoid the piercing sound of the smoke alarm. We have begun to recognize the baseline to our neighbour's favorite CD or 8-track. The city garbage and recycling trucks arrive once a week at 05:00 am to pick up industrial bins all along the adjacent alley. It seems to take about an hour of wrangling the containers while generating the maximum noise possible. We also enjoy the sound of little doggy footsteps racing back and forth overhead when it's playtime. Grrrrrrr. On the positive side, our landlady is wonderful. A cleaning lady arrives once a week to vacuum and clean the kitchen and bathroom and all requests for repairs are completed promptly. The custodian didn't even swat me when I firmly plugged the garburator with potato peels. Who knew??? I've had my garburator licence revoked...

We understand those of you in Saskatchewan are still living with snow and ice, so our annoyances are small. Arnie and I are content to be here right now. We think of you often and wish you all well.

Arnie & Brenda
#414 Union Bay Apartments
526 Yale Avenue North
Seattle Washington
98109 (206) 264-1943

Spring Scenes from the Bus Window

Have you ever been on a long, long bus trip? This is the part of the trip when everyone gets quiet and pulls out a book to read. You locate your iPod and insert the ear buds. Your mind wanders and you can't finish the Sudoku. Your head starts to nod and you drift off to sleep.

We are having a quiet week here in Seattle. There really is nothing new to report. Arnie is steadily improving. His skin rash is gone and we can start to slowly taper his prednisone. His appetite is better but he still has days with stomach upset, likely due in part to all his medications. His chief job this week has been to rest and recuperate.

Here are a few scenes from Seattle we'd like to share with you.
The first was taken early one morning. A beautiful full moon was setting by the Space Needle as we walked to the SCCA clinic for morning blood work.

The last two are signs of spring in our neighbourhood.











We are so grateful you decided to join us on our road trip. Enjoy the ride.
Take care.
Arnie & Brenda

The Big Climb

It's not too late. You still have time to register for The Big Climb, a fundraiser for The Leukemia and Lymphoma Society in Seattle. On March 22nd, participants can choose to either run or walk up the stairs of the Columbia Center, the city's tallest skyscraper. The center has 69 flights of stairs (1,311 steps or 788 feet of vertical elevation). Participants can be as young as 8 and as old as you'd like. Give us a phone call if you plan to attend. We'd be happy to wait on the main floor and cheer you on.

Arnie has been completing his own personal big climb this week, overcoming a number of troublesome symptoms. Here's his status:
-TFFS: completely resolved
- Nausea: much better
- GI Discombobulation: much better overall but occasionally a problem
- Headaches: much, much better
- Fevers: resolved
- Chills: less frequent
- Fatigue: still a daily concern
We are learning to evaluate Arnie's recovery by looking week-to-week, rather than day-to-day. The medical team tells us his progress is very typical. This is reassuring.

When we wrote last, Arnie had started an antibiotic for a possible chest infection. He was also placed on respiratory isolation, to prevent him from spreading viruses or bacteria to other patients. Arnie had to wear a mask when he was at the SCCA clinic and we had to sit in special areas when we were waiting for appointments. By Thursday, all his test results were back. No viruses or bacteria were found and it is unlikely he had an infection after all. Arnie does have to practice taking big deep breaths during the day to keep the tiny airways at the base of his lungs well inflated. We are no longer in respiratory isolation but will finish the ten days of antibiotics prescribed.

Just when things were looking up, Arnie developed a red splotchy rash on his chest and shoulders. We were off to the clinic again. His rash appears to be early GVHD (graft versus host disease). A skin biopsy will tell us for sure.

Here is a description of GVHD from the SCCA information binder:
GVHD is a disease caused by certain immune cells from the donor that attack tissues and organs in the patient who has received a transplant. Acute GVHD can occur any time after engraftment but usually begins within the first 3-4 months after transplant. GVHD is often the major problem after bone marrow transplantation. It may affect the skin, liver, stomach and intestines and varies in severity. After transplant, you will take 2 or 3 different medications that suppress your new immune system to prevent acute GVHD. Despite taking these medicines 4 out of 5 patients with an unrelated donor develop GVHD and need additional treatment. The usual treatment for GVHD is prednisone. The goal is to control symptoms. The dose is then reduced (tapered) over weeks or months depending on your response.

Now Arnie has added prednisone to his truck-load of other medications. The prednisone gives him a better appetite and a boost in energy but upsets his stomach and disrupts his sleep. His rash looked better after 2 doses, so we are praying this is a sign of a long lasting response. Arnie was taking one pill per day when he arrived in Seattle and is curently on 15 different medications which totals 35 pills per day. He is finding the burden of all these pills a bit of a trial but is keeping up with few complaints.

Thanks for thinking of us. Hope you are all well.
Sending warm thoughts your way!
Arnie & Brenda

Chills

Thanks for all the birthday greetings sent to Arnie. It was wonderful to hear from you. I was amused to see the notes from Arnie's brothers arrive with wishes of "Sappy Birthday" and "Happy Barfday". It appears boys will be boys at any age!! Surprisingly, a number of you also sent liver and onion stories. I find this baffling.

These days, Arnie continues to have headaches and GI distress. Both are s-l-o-w-l-y improving. Patience is indeed a virtue. In addition, Arnie has been experiencing an unproductive cough, low-grade fevers and chills for several days. The clinic directed us to call if his temperature reached 38.3 C (101 F). This finally happened yesterday at suppertime. We drove to the University of Washington Medical Center and Arnie was assessed in the evening transplant clinic. They collected all sorts of bodily fluids and will look for viruses or bacteria causing an infection. His chest X-ray may indicate signs of an early chest infection. The physician prescribed an oral antibiotic and allowed us to return home. If all goes well, in a few days the chills and fever should be gone.

The weather in Seattle has been giving both of us the chills lately. It's been rainy and temperatures have been hovering around the freezing mark. We saw flakes of snow on Sunday, but there was no accumulation on the ground. To keep our chills in perspective, our neighbor Laura sent this 'photo' of our house in Saskatoon. It gives us great comfort that David & Eric are taking such good care of things....

Arnie & Brenda

Email us at bqthiessen@sasktel.net

Happy Birthday Arnie

It's Friday March 6th. Arnie's special day!!

Arnie was born fifty-five years ago today. His new donor stem cells, however, come from a 20 year old.... Arnie thinks he should be able to calculate the average and claim to be 37 1/2 again! I don't know if I'm comfortable being 'the much older woman'. The new math would also jeopardize his new seniors status at Smitty's (see below)

Here's an overview of his day:
06:30 Alarm goes off. Time for pill to prevent nausea. Back to sleep.

07:00 Alarm goes off. Time for pill that causes nausea. Must take on an empty stomach. Back to sleep.

08:00 Up to shower. Afterward, time to snooze a little.

09:00 Time for breakfast and assorted breakfast pills. First temperature check of the day. Good. No fever.

10:00 Walk to the SCCA clinic for morning blood work. Stop for a rest and a giggle along the way. Arnie realizes both he & Al Johnston are now old enough to order the senior's liver & onions at Smitty's. (This is not a milestone I would look forward to.)

10:15 Morning blood work. The lab tech gives Arnie a postage-stamp sized sticky note that reads "Happy Birthday!"

10:20 Off we go for a little stroll down the street. Should we go home? Probably. Do we? No.

11:00 Look. An empty restaurant, just opening its doors. Let's go for lunch.

Should we go in? Probably not. We are supposed to avoid crowds.

Do we go in? Yes. No crowds in sight.

11:30 Arnie enjoys a roast beef sandwich and fries. Its pretty tasty but the frajolaki at John's Prime Rib with Rob & Roger tastes so much better.

12:00 Back to the apartment. We discover phone messages from Ruth & Rob. They make us smile.

12:30 pm Arnie phones friends at work to catch up on their news.

1:00 pm Time for Brenda to change Arnie's Hickman Line dressing. Everything looks good. What a great gift!

1:30 pm It's a delivery from Apria, our home infusion service. New bags of IV fluids arrive to keep Arnie well hydrated and keep his magnesium topped up. Gift #2 woohoo!

2:00 pm Time to start IV hydration using our portable infusion pump. Remember to take afternoon medications on an empty stomach.

2:15pm Second temperature check of the day. All is well.

2:30pm Email messages to read.

3:00pm Arnie's energy level starts to dip. Time for a nap. Brenda heads out for a walk and returns with a little angel food cake from the nearest grocery store.

5:00pm Happy Birthday phone calls and emails start again. Many, many best wishes from friends and family. Time to open birthday cards and presents. We have heard there are even more cards in transit.

6:30pm Birthday supper: tomato risotto, angel food cake, strawberries and more pills. We've learned our evening meals should be light.

9:00pm Time for the final medications of the day. Pretty soon it will be bedtime.

Thanks for sharing Arnie's birthday. Have a great weekend everyone.

Arnie & Brenda

Home Again, Home Again

Hi everyone.
Arnie was discharged from hospital Sunday afternoon. He continues to have intermittent nausea and pretty severe headaches but is medically very stable. His white blood cell count is improving, showing promising signs of early engraftment by the donor cells. The fever that brought him to hospital resolved quickly. Arnie will take antibiotics for another 10 days to ensure all stays well. He was very happy to leave behind the constant parade of temperature, blood pressure and heart rate checks, and the constant measuring of everything going into him and coming out. Many thanks to Sherri, his nurse on Friday & Saturday. She was originally from Vancouver and had just the perfect Canuck touch to ensure Arnie was on the road to recovery.

Early during his hospital stay, the dietician visited. She encouraged him to eat high protein and high calorie foods because his body needs adequate nutrition to heal. She also mentioned the hospital could provide intravenous feeding (total parenteral nutrition or TPN) if he couldn't eat enough. Arnie took this as a challenge. There was no way he was having TPN. The next day, armed with his antinauseant medications, he ate hospital meatloaf with potatoes & gravy and peaches with 'da heavy creme'. You should have seen the look of disbelief when the medical team made rounds the next morning. They should have forewarned Arnie about the grilled cheese sandwich though. Here's his description: "A thick slice of impossibly yellow orange cheese melted to glop texture between two grossly yellow slices of egg bread which were grilled enough to dry the bread out but not enough to change the colour. I was not upset when it joined the bannana in the 'lost' category. "

In Saskatoon, Arnie has breakfast with friends from our church pretty much every Friday morning. He told me he ordered bacon & eggs at 0705hrs Friday in honour of Men's Breakfast, and joined the group in spirit. Apparently Seattle bacon is incredibly salty. He did miss hearing Brad's corny joke of the week.

We've received many calls and notes filled with concern this week. Thank you so much. In a way, it distresses me that we should be a cause of worry for you. I was thinking about this, when I found this quote:
"When someone we love suffers, we suffer with that person, and we would not have it otherwise, because the suffering and the love are one, just as it is with God's love for us." ~Frederick Buechner

Thanks for climbing on board the bus & journeying with us.
Arnie & Brenda

P.S. If you want to be in touch via email, you can reach us at bqthiessen@sasktel.net