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