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