Reflections on Arnie's Journey

We're writing from our family room in Saskatoon. We're home!!!
So much has happened over the past two weeks. Here's a thumbnail sketch.

• David & Amy-Leigh flew to Seattle for a 4 day visit at the end of May. After a busy year at university and several performances with the Fireside Singers, they were definitely ready for a vacation. We were thrilled to see them. The weather was great and we had a terrific time together. We sent David home with an extra-large suitcase filled with our bulky winter coats and heavy sweaters.

• Arnie spent 6 hours on Thursday May 28th getting an antibody booster infusion to top up his tank. He had his last clinic visit that Friday. We bid a fond farewell to the Lime Team and all the clinic staff. The goal of the Seattle Cancer Care Alliance is "to eliminate cancer as a cause of human suffering". We pray they achieve their goal. Words cannot adequately express our gratitude for the care, support and encouragement we received.
  


• Saturday morning (May 30th) we CRAMMED everything into our car and headed north. We cruised through customs answering probing questions like: "Why is your car so loaded with stuff?" "Can't they do those transplants in Canada?" "Why don't you travel through the US to save money on gas?" "Do you have purchases totaling more than $2000.00?" After a brief stop in White Rock to visit Arnie's Uncle Paul and Aunt Luise, we continued east. We were awestruck by the beauty of the Rocky Mountains, the Alberta foothills and the Saskatchewan plains. After three full days of driving, we reached Saskatoon Monday evening (June 1st).


• Since our return, we've had an appointment at the Saskatoon Cancer Centre with Dr. Fibich, Arnie's new transplant hematologist. We reconnected with family and friends, unpacked most of our boxes, had a visit from Brenda's parents and celebrated the wedding of Maggie & Bob.

Arnie continues to recover from his stem cell transplant, a recovery that will take a full year or more. Here are some of the ways you can help.

• Arnie continues to be at a high risk of infection. It will take at least a year for his immune system to recover and his recovery may take even longer, depending on the medications he will need and how his new stem cells accept his old body. While he is at a higher risk of infection, he will need to pick activities that will minimize exposure to infection. Please don't visit if you have a cold or the flu. Hugs should be administered with discretion.


• Handwashing is the most effective way to prevent infection from spreading. We were taught to wash our hands frequently. Our family and friends will be asked to do the same when visiting. Please don't be offended if we remind you to wash your hands.


• Arnie has to follow a special diet while his immune system recovers. Please understand if he cannot share everything you have prepared.


• Arnie will continue to experience post-transplant fatigue for some time. His energy level will have good and bad days. Please offer to visit but understand when he needs his rest.
  

Now we are home again, Arnie & I have decided this will be our last blog post. Thank you so much for coming along on our journey. Your thoughts, prayers, emails, phone calls, cards, notes and positive vibes made a tremendous difference to us. We were comforted and supported by the knowledge you cared. You truly made a difference in our lives. Thank you so very much. We are so grateful to know you.

Arnie & Brenda

Running Back to Saskatoon

Yes we're coming home!
We got the OK to leave this week and had our last clinic visit this morning. Our apartment is filled with suitcases, boxes of medical supplies, bags of garbage and recycling. Hope we put the right stuff in the car....

Medical news in brief:
Arnie is doing well. He is off his antibiotics. His Hickman Catheter will stay in place for a month or two. He is at risk of a recurrent CMV infection and would need IV treatment if this occurred. We must be very vigilant for signs of infection and graft-versus-host disease for the next many months. But......we can come home!

We had a visit from David & Amy Leigh at the beginning of the week. How wonderful to share our last few days in Seattle with them. More news later. Right now I have to pack.

Sending you our love.
Arnie & Brenda

Two-By-Two

Hi again.
For the past four months, Arnie and I have spent many, many hours at the SCCA clinic and our time between appointments is often spent people watching. Everywhere we look, hallways and waiting rooms are filled with people travelling two-by-two. Everyone arriving for a stem cell transplant must come with a designated caregiver. We've spent many hours pondering which one of the pair is the patient and which is the caregiver. At times this is obvious, with chemo-induced hair loss and fatigue apparent. At other times, only an X-ray ID bracelet or the top of a Hickman line dressing provide the clue. The pairs come in all ages, shapes and sizes. They are brother and sister, husband and wife, parent and child, girlfriend and boyfriend, neighbour and friend. It is so important to have someone to share this experience. Caregivers provide another set of eyes, ears and hands during the transplant process. They assist with care, organize medications, prepare meals, maintain the home front and provide support. The caregiver's role continues after we return home as the medications and vigilant review for signs of GVHD must be maintained for many months.

We've often mentioned how wonderful the medical care has been here. Well, the SCCA takes care of caregivers as well and for this we are truly grateful. The clinic offers emotional and spiritual support through group sessions, labyrinth walks and the sanctuary. Occasionally, comedies like 'I Love Lucy' and 'Carol Burnett' run during the lunch hours. The clinic offers a journal class on Mondays, a drop-in knitting group on Tuesday afternoons and a therapeutic yoga class on Thursdays. Lunch and learn classes run periodically with topics like smoking cessation, nutrition and skin cancer. Attendance is completely optional and patients & caregivers are encouraged to participate if they are interested. Programming like this is so helpful. The resource center on the 3rd floor has computers, printers, fax machines and photocopiers free for use. The patient navigator will assist with computer searches or requests for information. The Red Brick Bistro offers meals that follow the rules of the immunocompromised diet. Every day in every way, the SCCA demonstrates excellence in patient and family centered care.

Another important focus of the SCCA and Fred Hutchinson Center is cancer research. Before Arnie's stem cell transplant, he agreed to participate in a number of studies. Most involved giving extra samples of blood or bone marrow. The 'nasal wash' study has been more interesting. The study hopes to understand if regular screening for respiratory viruses will identify illness early and help target appropriate therapy. At his weekly visit, Arnie is asked about cold & flu symptoms and has his lung function checked using a spirometer. Finally, nasal wash samples are collected and sent to the virology lab. A small amount of saline is squirted into each of Arnie's nostrils which he blows into a sample container. On one visit, the squirt was extra vigorous and the saline went right up his nose and down his throat, never to be seen again. The study will continue, on a less frequent basis after we return home. Arnie swears there is nothing like a good nasal cleanse!

We walked two miles (3.2 km) from our apartment to the Olympic Sculpture Park on Saturday. The weather was warm & sunny and we enjoyed the park and artwork. It's the Memorial Day long weekend here, so our next clinic visit will be delayed till Wednesday. David and Amy Leigh arrived this afternoon for a 3 day visit. It is so wonderful to see them. Arnie & I felt like true Seattle natives tonight as we drove around showing them the sights.

Thank you so much for the care and support you've sent us.
Much love,
Arnie & Brenda

Sleepless in Seattle

Hi everyone.
Our apologies for not writing for a while. Our time in Seattle is drawing to a close and we've found ourselves occupied with many different things. Arnie's schedule has been full of pre-departure medical tests and we've had additional classes and appointments to fill the days. We attended a 'long-term follow-up class' today and learned about the precautions we need to follow for the next year or two. We've had visits with the dentist and nutritionist as well.

It's been 89 days since Arnie's stem cell transplant and overall he continues to do well. His new bone marrow is producing red blood cells, white blood cells & platelets and his cancer is in remission. Last week we learned his CMV infection was finally under good control and he was able to stop taking foscarnet. His skin rash due to acute graft versus-host disease is gone. He goes to PUVA (medical tanning) only twice a week now and his prednisone dose is slowly being reduced. It's been great to finally resolve these two problems. On to the new issues.......

Every day since his transplant, Arnie has given himself intravenous magnesium through his Hickman catheter. (One of his immunosuppressants causes his body to loose magnesium.) Our task this week is to convert Arnie from IV magnesium to magnesium pills. This conversion is done slowly because oral magnesium commonly causes diarrhea and GI distress. (Remember Milk of Magnesia....) Arnie started taking a low dose of oral magnesium on Monday and things are going well so far. If he can take enough oral magnesium, his Hickman catheter can be removed before we return to Saskatoon.

We were feeling pretty confident until yesterday afternoon when the clinic phoned about a new problem. Bacteria grew in surveillance blood cultures drawn on Monday and Arnie needed to start vancomycin, a potent injectable antibiotic. Arnie feels just fine but I had a mini-melt down when we got the news. (Yes, I was sleepless in Seattle last night.) We don't know if this will delay our return to Saskatoon, so we will have to wait and see how things work out over the next few days. This was not the first time I've been sleepless in Seattle. A few weeks ago, both Arnie & I awoke to sounds outside our apartment window. There is a rowdy neighbourhood bar a block away. At 2:00am we heard a megaphone announce "This is the Seattle police. Get down off the roof."

Last Sunday, Arnie walked from our apartment to Volunteer Park and back. His goal was to climb the water tower to see the amazing view of the city. He didn't attempt the climb when we were there in April. Volunteer Park was designed by John Charles Olmsted, a famous landscape architect whose father designed New York's Central Park. The weather Sunday was warm & sunny and Arnie could see Mount Rainier faintly in the distance.

Love to you all.

Arnie & Brenda

On the Home Stretch

It's day 78 since Arnie's stem cell transplant. We were told to prepare to be in Seattle for 100 days post-transplant, so we are definitely on the home stretch now. Arnie continues to do well and there have been no major medical changes since our last note. He will admit to being a little more tired these days. He experienced late onset fatigue after all his previous cancer treatments although the current drug regime can also be a contributor. Our goal is to balance rest and activity each day. Sometimes we are successful and other times..... Arnie's clinic schedule for next week looks quite busy, filled with pre-departure medical tests. He will be checked from head to toe before we get the OK to return to Saskatoon.

Swine flu was definitely in the news here the past two weeks. Vigilant as ever, the SCCA clinic stepped up its infection control practices. They cancelled all patient and family classes and classes at the Hutch School. To protect patients, caregivers and families, they also increased cold and flu symptom screening of every individual entering the clinic . This week, everything will return to normal as the number of documented flu cases in Washington state remains low. Wash your hands. Wash your hands. Wash your hands.....

Arnie's brother Gene arrived for a visit last weekend (May 1st to 3rd). Gene has been living in Dubai for the past couple of years, working on major off-shore construction sites with J. Ray McDermott International. It is always so interesting to hear his stories about life overseas and his work as a safety officer on off-shore barges in Malaysia. The weather here had turned cool and rainy but despite this Gene, Arnie and I walked many miles together. His visit passed far too quickly but Gene's time at home is very limited and there are many friends and family in Canada to see.

A few days after Gene's departure, we had a visit from Laureen and Danielle. Laureen is a landscape architect working out of Crosby Hanna's Regina office. She was in Vancouver for meetings and drove to Seattle for a short vacation with her friend Danielle. Unfortunately, the weather continued to be very cool and wet during their visit. Undaunted, Laureen & Danielle toured many of the city's parks, the floating bridge and the locks between Lake Union and Puget Sound. We had a rainy rendezvous at Gasworks Park one afternoon. Arnie and I hope to visit a few of the sites they recommended if we have time before we leave.

This morning, Arnie and I took in a walking tour of public art and architecture downtown. One percent of all new building construction in Seattle is spent on public art. There was so much to see: interesting buildings, the Freeway Park, public sculpture and artwork. The blown glass pieces by Dale Chihuly and other world class glass sculptors took our breath away.

Thanks to all for your notes and prayers.
Happy Mothers Day!
Arnie & Brenda

April Showers, May Flowers & Progress

April is slipping away and May flowers are flourishing in Seattle. Road repairs, high-rise construction and climbing cranes are everywhere. Seattle is definitely "shovel ready". Flocks of construction workers in safety vests and hard hats cluster on street corners. Work on the new high rise next to our apartment is progressing daily and our street is frequently blocked as concrete is poured to complete the next floor.

We see Arnie's transplant physician and the 'lime team' at our clinic visit each Monday. They continue to reassure us regarding Arnie's progress. The new donor stem cells have settled in and are producing a bumper crop of red blood cells, white blood cells and platelets. Arnie's CMV infection is responding to the antiviral medication and his rash from graft-versus-host disease (GVHD) is improving on the PUVA three times a week (medical tanning). We can begin reducing his prednisone dose ever so slowly. Arnie had a bone marrow biopsy and CT scan last week and the doctors say he is in full remission. How fortunate we are!!

Arnie continues to munch on a multitude of medications each day. Three different immunosuppressants keep his GVHD in check (prednisone, tacrolimus & mycophenolate). He takes medications to prevent bacterial infections, an injectable drug to treat/prevent viral infections and foul tasting pills to prevent fungal infections. Arnie also takes medications to protect his liver and his stomach. To round everything out, he takes vitamin D and a blood pressure pill. (High blood pressure is a side effect of one of his immunosuppressants.)

Arnie needs to keep up his calcium and vitamin D intake so the prednisone doesn't waste away his bones. He faithfully eats a calcium rich diet with lots of milk, cheese and calcium-fortified orange juice & Total breakfast cereal. To complicate matters however, there are periods of time each day when he is not allowed to eat calcium-rich food. He takes mycophenolate three times a day, and he has a two-hour "no calcium window" on either side of each dose. (Good times to have calcium are 9:00 am to noon and 4:00 to 7:00 pm daily.) Arnie also needs to ensure his fluid intake is around three litres per day to ensure his kidneys are flushing well. Finally, he must avoid grapefruit because it interacts with another of his pills. Our nutritionist advised us to read labels carefully in the grocery store. New this week is carbohydrate counting. Prednisone can increase blood sugar so we are counting carbs to keep him in a good range.

Arnie & I had a few days to visit with good friends John & Fred Weisberg earlier this week. Fred and his family live in Vancouver and John flew in from Ottawa for meetings. They drove down on Sunday to spend a few days with us. John, Fred & Arnie are avid woodworkers and our visit to Northwest Fine Woodworking was a highlight. The store displays handcrafted pieces of furniture that are amazing works of art. Together, we toured the Seattle Public Library to experience its innovative architecture and the Boeing plant to view construction of the new 787 aircraft in the world's largest building. We had a farewell meal together at Arnie's Restaurant in Mukilteo. Here is a photo of the guys browsing through the power tool section of a local woodworking store.

All the best,
Arnie & Brenda

The Gift of Friendship

A warm hello to our friends and family. Thank you for your support and encouragement, your notes, phone calls and prayers. Each one has been a gift.

What a week we have just had!! Friends from Saskatoon came for a visit. Last Wednesday, Brenda & Dan Craig arrived. They will celebrate their 25th wedding anniversary this summer, and decided to take a trip as part of their anniversary celebration. Luckily for us, they chose Seattle as their destination. Julie & Brad Evanson arrived on Friday to join the fun. Both the Craigs and the Evansons are good friends from Resurrection Lutheran Church. They were able to find a wonderful bed and breakfast in the Capital Hill neighbourhood to serve as the base for their Seattle adventures. Brenda acted as our head tour guide and ensured each day was filled with adventure. Every day the Craigs, Evansons and Thiessens set off to see the sites, armed with sensible shoes, tour books, maps, bus schedules and exact change. Arnie and I had a few mornings apart, to attend medical appointments. Arnie and I also spent most afternoons at our apartment, resting for a few hours while the others carried on without us. All in all, it was a fabulous visit.

Here are some of our highlights:

*Basking in day after day of warm sunny weather

*Wandering around the yachts on South Lake Union

*Visiting the Space Needle to see the Seattle skyline

*Learning the early history of Seattle through the entertaining Underground Tour (Arnie stayed above ground, safely away from the dust, water, mold, dead mice and rusting antiquities....)

*Touring Volunteer Park and climbing the water tower to see the sites

*Winning tickets to the Seattle Mariners game (Brad & Dan attended; Arnie watched on TV)

*Shopping for bargains with the girls at Nordstrom's Rack and Ross's (My emerald green sneakers are very comfy.)

*Enjoying many yummy restaurant suppers together (We won't forget the giant piece of Granny Smith apple pie and the towering serving of 7-Layer Texas Funeral Chocolate Cake we shared!!)

*Relaxing and visiting together on the roof top garden of our apartment building, watching the sun set.

Our time together passed so quickly and our friends have returned to Saskatoon, leaving us with many happy memories. Thanks for the card they delivered filled with well wishes from other friends at Resurrection and the beautiful prayer shawl Arnie received.

It's Day +61 since Arnie's stem cell transplant and our medical team is very happy with his progress. At the end of last week, Arnie's CMV count began to decrease. Yahoo!!! The foscarnet is working well and we were able to reduce the dose to once a day. Now Arnie only has to infuse medications into his Hickman catheter for four hours a day, instead of eight. His GVHD rash appears to be improving on the PUVA (medical tanning) and we hope to soon begin reducing the prednisone dose. We are keeping our fingers crossed that no new complications arise between now and day 100.

Until next time, take care everyone. Much love.

Arnie & Brenda

PS In the wee hours of Wednesday morning (April 15th) persons unknown made off with the top of the space needle. Investigators initially thought it was a magic stunt by Doug Henning but later confirmed that aliens had been at the Sci-Fi museum and decided to take a quick spin around the solar system with the saucer. They returned the craft later that morning.

bqthiessen@sasktel.net

Prescription Tanning Seattle Style

It's Day +53 since Arnie's stem cell transplant and time to check in again. Our days are still centered around clinic visits, mountains of medications and daily blood draws. At present, Arnie has two active medical issues: a worsening rash due to graft versus host disease (GVHD) & re-activation of cytomegalovirus (CMV).

GVHD occurs when immune cells from the stem cell donor attack the patient's organs because they see them as foreign. In Arnie's case this is showing up as a rash on his largest organ, his skin. (You'll agree he has an impressive body surface area.) His rash first appeared in early March. Arnie started to take prednisone and within a few days the rash was gone. Starting mid-March, the prednisone dose has been slowly reduced. Unfortunately, the rash has now re-appeared on the lower dose of prednisone.

Our transplant physician offered two options for treatment. Arnie could take a higher dose of prednisone or he could be treated with PUVA. After considering the pros and cons, Arnie decided to stay at his current dose of prednisone and give PUVA a try. PUVA stands for psoralen and ultra violet light. Arnie will be "tanning" under UV-A light three times a week. Before each tanning session he takes methoxypsoralen, a drug that sensitizes him to the light's effect. He had his first session on Monday and tanned for 45 seconds!! The time will slowly increase. From now on, it will be very, very important for Arnie to wear sunscreen, a wide-brimmed hat and sunglasses when he is outside, to prevent sunburn. It's like being with an undercover rock star!

We are awaiting further news about Arnie's CMV count. Today's blood work showed some improvement. Arnie's brother Gene suggested the "Country Music Virus" could be driven out by rap music. We asked our medical team and they were concerned rap music would only make the CMV angrier. I guess we will stick with the foscarnet twice a day.

Enough medical news.

We had a quiet Easter weekend. Arnie and I attended a Good Friday service at the SCCA clinic and I went to the Easter Sunday service at a church close to our apartment. The sanctuary was decorated with tulips and daffodils. The music was wonderful, accompanied by a pipe organ, grand piano, trumpets and french horn. The choir sang "Alleluia" by Randall Thompson, a piece I learned with University Chorus last year. I sang very quietly along with the altos.

Our highlight this week was a visit with Doug and Aandra, friends from Richmond B.C. We had a great meal together and received lots of hugs from Marta & Lola, their fabulous daughters. I'm pretty sure the hugs will speed Arnie's recovery. Just look at the smile on his face.

Love to all.

Arnie & Brenda

If at First You Don't Succeed, Try Try Again

Hi everyone. Here's a short Arnie update.

When we left you last, Arnie had started ganciclovir, a medication to treat cytomegalovirus. CMV is a virus Arnie was exposed to many, many years ago. CMV has made an encore performance in Arnie's blood and it will not get off the stage. After a week of ganciclovir, Arnie's CMV count is increasing instead of decreasing. Our clinic nurse phoned this morning with the news. It was time to change to a new medication. By noon we were off to the clinic so Arnie could get his first dose of foscarnet.

The 5th floor of the SCCA clinic houses the Pharmacy and the Infusion Center. This is where chemotherapy is given and where patients receive transfusions, IV hydration, IV electrolytes and first doses of intravenous medications like foscarnet. Arnie spent two hours receiving IV fluids to hydrate him well and two more hours receiving foscarnet. Another day in paradise. Our home infusion service dropped off supplies so starting tomorrow, we can do this twice a day at our apartment. The foscarnet is prepared in a 500mL 'balloon' we will attach to Arnie's Hickman catheter. The balloon slowly deflates, infusing the drug into his bloodstream over 2 hours. It's very cool technology.

Other news in brief......

• On Tuesday afternoon, Arnie and I went to a movie. Our son David recommended "Coraline 3D" and we decided to give it a try. There were only four of us in the theatre, so we were definitely successful at avoiding crowds!! The movie was fun and we looked pretty sophisticated in our 3D glasses.
• Arnie has been busy the past few evenings, doing our income tax. Go Arnie go...
  
• I have my first blisters from wearing sandals....... a signal spring has definitely arrived.
  
• Arnie dialed into an AutoCad Webinar yesterday and learned about the newest version of this software over the Internet.
  
• We have the highest concentration of coffee shops per hectare but we can't "roll up the rim" in Seattle :(
  
• Have you heard about the newest "Chia Pet" marketed briefly in the U.S.--- the Chia Obama!! It's TRUE! Chi Chi Chi Chia!

Have a wonderful Easter weekend.

Help us to be the always hopeful
Gardeners of the spirit
Who know that without darkness
Nothing comes to birth,
As without light
Nothing flowers.

Much love to all,
Arnie & Brenda

Eric & Krystle's Seattle Adventure

It's Palm Sunday and day +44 since Arnie's stem cell transplant. A special day.

This follows a special week. Our son Eric & his girlfriend Krystle came for a visit, our first company since we left Saskatoon. We have been so hungry for conversation and companionship and they arrived at the perfect time. Arnie is feeling much better and is able to get out and do a few things again. The timing couldn't have been better.

Eric & Krystle had three and a half days with us in Seattle. They were very excited to be leaving the cold of Saskatoon for the milder weather of Seattle, but as Robbie Burns says "the best laid plans gang aft a-gley". They were greeted with two days of solid grey clouds and a deluge of freezing cold rain. This was not the gentle Seattle drizzle Arnie & I have experienced; this was a downpour of Biblical proportions complete with occasional flecks of snow. Undaunted the first morning, the four of us trudged to the Science Fiction Museum to tour it together. Arnie & I took time to rest in the afternoon and the four of us met later for supper and a visit at our apartment. On the second day of their visit, Krystle & Eric developed an impressive bout of GI discombobulation. Let's just say, Krystle will not be yearning for clam chowder any time soon. To protect Arnie's health, Eric & Krystle spent the day away from us, resting and recovering. Was it a virus or food poisoning? I don't think we will ever know for sure. By Friday morning, the rain stopped, the sun came out and our visitors could face solid food again. Yahooo!!! We spent our last day together touring the SCCA clinic and wandering through our neighbourhood. It was so sad to see them leave but we have only 56 days till we can head home to be with them again.

On Tuesday, Arnie started ganciclovir, a new medication to treat CMV or cytomegalovirus. Both Arnie and his stem cell donor had been exposed to this virus in the past. The virus lay dormant in his body until Arnie began taking prednisone to treat his GVHD (graft versus host disease). The additional immunosupression from the prednisone allowed the CMV to 'reactivate'. The clinic staff were screening Arnie's blood work, looking for this possible problem. Once they saw signs of CMV in his blood again, they started the new medication. Ganciclovir is an intravenous medication that must be given twice a day through his Hickman catheter. The drug was delivered to our apartment, prepared in an 'elastomeric pump device' which is a cool little doohickey my pharmacy friends would find interesting. So far, the addition of this new medication hasn't caused Arnie any problems.

On the 'fun side' of our life, Arnie & I recently discovered the Seattle street car also known as the South Lake Union Trolley. (Yes we rode the S.L.U.T.) The route starts close to the SCCA clinic and ends in the downtown retail core. We have no real interest in shopping but it's nice to have the option of zipping down to the center of town to see the sites. We also discovered a movie theatre on the 4th floor of one downtown shopping mall. Arnie received the OK to go to matinees as long as they are poorly attended. We are still avoiding crowds. Think of us on a Tuesday afternoon at an unpopular movie. This afternoon, we walked around the University of Washington district and paid a visit to the university bookstore.

Thanks to all for your notes and calls, your prayers and good vibes. We are so grateful for your support. We think of you often and are sending you our love.
Arnie & Brenda

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

It's Not a 'Walk in the Park' Transplant

It's Day +6. Arnie's new stem cells are coursing through his blood stream, selecting the best nooks, crevices and cul-de-sacs to call home. Medically, this post-transplant period is called "waiting for engraftment". The donor cells will take 2-3 weeks to fully settle in.

While the donor cells are establishing themselves, the rest of Arnie's body is dealing with the side effects of his chemo, radiation and his new medications. The aftermath of his treatments are unfortunately proving more stubbornly unpleasant than we had anticipated. Perhaps this is why some of the medical team wish the mixed chimeric transplant was not called a 'mini transplant'. One physician reminded us "It's not a drive-by transplant. It's not a walk in the park."

Fortunately, Arnie's TFFS has resolved but he has been plagued by ongoing nausea, headaches, GI discombobulation and muscle fatigue. The nausea and GI upset comes and goes like the tides on the Puget Sound, but the headaches have been a real pain.... Arnie learned Reiki a few years ago and finds this helpful for headache relief.

On Wednesday afternoon, Arnie got his hair cut. Like Sampson, this appeared to weaken him. By suppertime he had developed a low grade fever which brought us to the University of Washington Medical Center where he was admitted. Fever is quite common early post-transplant and could be caused by infection or inflammation or ??? The team started an antibiotic and will keep an eye on him for a few days.

Last night the temperature in Seattle dropped to 36 F (+2 C) and a couple of inches of snow fell causing school closures and people arriving late for work.
Arnie wrote this Haiku:
Snow nestles on trees
Fear slows the daily commute
My view looks like home.

Take care up there in the frozen North.
Arnie & Brenda

Tales from Day Zero

Arnie:
The effects of the pre-transplant chemo managed to slow me down considerably. In the morning I had the TBI which was no problem as it meant I had to lie on a bed while a team of four saturated my body with radiation. The effects from the radiation were delayed, so we made it home without incident and quietly prepared for our trip to the University Medical Centre. By about 3 in the afternoon I was feeling completely run down and the radiation was making its effects known. Total GI discombobulation culminated with losing my supper banana in the hospital parkade (and I don't mean misplaced). The staff at the hospital were great and tried their best to keep me comfortable and manage my symptoms with limited success.

The donor cells arrived at the SCCA Lab at 9:30 pm and the stem cell infusion was started at 11:00 pm. The cells were in a big IV bag and looked just like a blood transfusion. They were infused slowly over four hours to keep an eye on any adverse reactions but none occurred.

I slept on and off during the night and by 6:00 am I was feeling so much better. The GI symptoms had mostly disappeared and the only major problem was incredibly itchy feet. It's just like when I was a kid playing outside for three hours at -30 until my feet froze and the itch that sets in when they thaw. I'm naming it Thiessen Frozen Foot Syndrome (TFFS) and with size 14 feet.....

I am imagining the new stem cells have been traveling around my system and are checking the place out. They will have discovered the bone marrow has a few old weak stem cells hanging around but lots of growth opportunities for eager young entrepreneurs to set up shop. Over the
next three or four weeks they will build shops and factories to make more stem cells and change the population of Marrowville, sending the old ones off to their reward. After that they will need to work on the rest of the body but that's for another submission.

Brenda:
Turns out Feb 19th & 20th are both considered Day Zero, as the stem cell infusion started late the first evening & finished early the next. This is Arnie's second stem cell transplant and my second opportunity to sit with him during the infusion and witness this sacred event. The lights were dimmed and the room was quiet and comfortable. Outwardly, it was pretty uneventful.

I was able to stay overnight in Arnie's room on a pretty comfy fold out chair. The next morning Arnie announced "I feel better. They're working already." Our nurse greeted him with "Happy Birthday". A special day. We were discharged home by 3:00pm.

We understand the next 2-3 weeks will be fragile as Arnie's 'old' bone marrow is unable to fight infection and send out new blood cells and the 'new' stem cells have not established themselves yet. His GI discombobulation continues today. Our 5 minute walk to the SCCA clinic took 10 minutes and included a short rest at the top of the hill. Arnie has snoozed much of the day. But we have such hope for tomorrow.

Thanks once again for your support. Much love to you all.
Arnie & Brenda

Day Zero is 36 Hours Long

Hi everyone. A big, big thank-you for all the phone calls, notes and special surprises we've received. We've finally arrived at Day Zero.

We had an early start to the day. Patients are routinely given IV fluids to keep them well hydrated before TBI (radiation). At 0600hrs Arnie & I were awake and together we managed to start the little portable infusion pump provided by our home infusion service. It happily purred along for the next four hours, infusing IV fluids as Arnie had breakfast, walked to the clinic and went through the morning appointments. The pump, IV fluids and tubing fits into a little backpack provided.

Arnie's radiation appointment was at 1030. The staff in Radiation Oncology were so caring and friendly and helpful! The treatment took 45 minutes. They watched Arnie and could talk with him through the entire process. Three different staff came out to see me while I waited, to reassure me Arnie was doing well. This is just an example of the caring we have experienced here. By noon we were finished our clinic appointments so we walked (slowly) back to the apartment for lunch and a snooze. Arnie says he feels a little like a hot dog that's been microwaved.

The next step is the stem cell infusion. The donor cells were collected this morning and will be flown to Seattle from somewhere in the U.S. The cells do not arrived in Seattle until 9:00 tonight so we do not expect to receive them until midnight. I guess Day Zero will be longer than we anticipated.

Arnie will check into the University of Washington Medical Center (hospital) tonight to receive the stem cells. He will likely be discharged tomorrow or the next day. We will be in contact once we are back in the apartment.
Thanks again
Arnie & Brenda