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
Thursday, February 26, 2009
Saturday, February 21, 2009
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
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
Thursday, February 19, 2009
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
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
Friday, February 13, 2009
Count Down to Transplant
It's a special weekend. It's the President's Day weekend in Seattle, the Family Day weekend in Saskatchewan and Arnie's pre-transplant weekend. Arnie will receive chemotherapy on Sunday, Monday & Tuesday. Wednesday is mostly a 'day of rest'. On Thursday Feb 19th Arnie will have radiation in the morning and his stem cell transplant in the evening. It's exciting to know we are so close to this important day.
Chemo went well today. Arnie didn't experience any immediate side effects like nausea or vomiting. He did have multiple blood draws to check his health and to collect samples for research studies taking place at the clinic. We are grateful that all the blood samples now come from his Hickman catheter and the painful pokes are over.
Last Friday we learned all about TBI (total body irradiation). We met the radiation oncologist, a medical resident, two radiation technologists and the clinic nurse. They all provided instruction and reassurance that the radiation is very well tolerated. The team will use one day of low dose radiation to damage Arnie's immune system just before the transplant. This will allow the new donor cells to flourish. We learned TBI is dosed on body 'thickness' so they made careful measurements of Arnie from head to toe. The treatment will take about 45 minutes.
On Friday we picked up a huge bag filled with new medications Arnie needs to start. We were also given a gigantic medication organizer to keep us on track. You know you have a lot of medications when you need an organizer called the "Medi-chest Large". Sadly, even the Medi-chest Large doesn't have enough spaces so we have a second organizer we purchased to use as well. On Friday evening, our home health care provider delivered a big box of sterile supplies we will use to take good care of Arnie's Hickman catheter. Our little apartment is filling up.
Leading up to this weekend, we tried to cram in as much tourism as possible. Last Wednesday evening we went to see the musical "The Lion King". The show was absolutely wonderful. The story is the same as the Disney movie, so all the characters are animals. The cast accomplish this using amazing costumes, masks and puppets. The show starts with a procession of life sized giraffes, hippos and elephants walking down the aisles to the stage. Simba the lion cub was played by an 11 year old boy who was just great. Our favourite character was Rafiki the baboon, played by a South African actress with a fabulous voice and the ability to speak in Africian dialects. I'm so glad we had the opportunity to attend.
Our last treat this week was an opportunity to get together with my brother Bob. We haven't seen him in quite some time, so it was wonderful to have this visit and know we can see him a few more times before we leave for home.
Thanks again for your notes, good wishes and prayers. We are so grateful for your friendship and support.
Arnie & Brenda
Chemo went well today. Arnie didn't experience any immediate side effects like nausea or vomiting. He did have multiple blood draws to check his health and to collect samples for research studies taking place at the clinic. We are grateful that all the blood samples now come from his Hickman catheter and the painful pokes are over.
Last Friday we learned all about TBI (total body irradiation). We met the radiation oncologist, a medical resident, two radiation technologists and the clinic nurse. They all provided instruction and reassurance that the radiation is very well tolerated. The team will use one day of low dose radiation to damage Arnie's immune system just before the transplant. This will allow the new donor cells to flourish. We learned TBI is dosed on body 'thickness' so they made careful measurements of Arnie from head to toe. The treatment will take about 45 minutes.
On Friday we picked up a huge bag filled with new medications Arnie needs to start. We were also given a gigantic medication organizer to keep us on track. You know you have a lot of medications when you need an organizer called the "Medi-chest Large". Sadly, even the Medi-chest Large doesn't have enough spaces so we have a second organizer we purchased to use as well. On Friday evening, our home health care provider delivered a big box of sterile supplies we will use to take good care of Arnie's Hickman catheter. Our little apartment is filling up.
Leading up to this weekend, we tried to cram in as much tourism as possible. Last Wednesday evening we went to see the musical "The Lion King". The show was absolutely wonderful. The story is the same as the Disney movie, so all the characters are animals. The cast accomplish this using amazing costumes, masks and puppets. The show starts with a procession of life sized giraffes, hippos and elephants walking down the aisles to the stage. Simba the lion cub was played by an 11 year old boy who was just great. Our favourite character was Rafiki the baboon, played by a South African actress with a fabulous voice and the ability to speak in Africian dialects. I'm so glad we had the opportunity to attend.
Our last treat this week was an opportunity to get together with my brother Bob. We haven't seen him in quite some time, so it was wonderful to have this visit and know we can see him a few more times before we leave for home.
Thanks again for your notes, good wishes and prayers. We are so grateful for your friendship and support.
Arnie & Brenda
All Creatures Great & Small
It's the end of another week filled with preparations for Arnie's stem cell transplant. We met with the attending physician and our team nurse at the clinic on Wednesday for our 'data review session'. All Arnie's tests have come back. His heart, lung, liver and kidney function is good. His cancer is in remission. There is no evidence of cancer in his bone marrow or cerebral spinal fluid (fluid around his brain). No evidence of cancer on the CT scan or MRI. In fact he is the picture of health, except the medical team expects the cancer will come back again just like it has several times before. The goal of the stem cell transplant is to change Arnie's immune system to keep his cancer in check.
Arnie had a 'Hickman catheter' placed on Thursday. It is a large IV line that goes under the skin of his chest wall and threads its way into the right side of his heart via the jugular vein. This catheter will stay in place until we leave Seattle. Arnie will get all his chemo, IV fluids and IV drugs and most important his new stem cells through this line. The majority of his blood work can be drawn off this line as well. Hallelujah!!! Arnie was beginning to feel like a gigantic black & blue pin cushion. Dr. Hickman, who developed this line, practiced at the SCCA and just early retired this fall at age 83!! Arnie was a little sore after the line placement, but was otherwise fine. Today we learned how to care for the line at home. We discovered the tips of the line fit securely into a little knitted Sasktel cell phone case Arnie can wear around his neck.
We had a few days of free time earlier in the week to enjoy some pre-transplant tourism. The SCCA clinic gave us 2 free passes to visit the aquarium. Arnie learned about octopus mating and I got to pet a starfish. In typical Arnie fashion when the aquarium staff mentioned that the new eel fish hadn't eaten in the two weeks since it had arrived, he suggested they try the animals favorite food, sea urchin. They will add them to the menu on Monday. We also visited the zoo. It was quite cool that day, so we saw a wide variety of African and Asian animals huddling to keep warm. I thought the hippo's hind end was very impressive and I was able to piece together the lyrics for the Kookaburra song we learned in elementary school. (Kookaburra sits on the old gum tree.....) Once Arnie becomes immunocompromised next week; these two venues will be off limits for a full year.
Arnie and I have been walking a couple of miles each day to get a feel for our neighbourhood. We've seen pansies in bloom in sheltered planters. Yesterday I saw our first daffodils and tulips in bloom, again in selected warm sheltered locations. The other day we walked by the windows of a business crowded with computer-filled work cubicles. A sign posted on the window read "Please don't feed the geeks."
Take care.
Arnie & Brenda
Arnie had a 'Hickman catheter' placed on Thursday. It is a large IV line that goes under the skin of his chest wall and threads its way into the right side of his heart via the jugular vein. This catheter will stay in place until we leave Seattle. Arnie will get all his chemo, IV fluids and IV drugs and most important his new stem cells through this line. The majority of his blood work can be drawn off this line as well. Hallelujah!!! Arnie was beginning to feel like a gigantic black & blue pin cushion. Dr. Hickman, who developed this line, practiced at the SCCA and just early retired this fall at age 83!! Arnie was a little sore after the line placement, but was otherwise fine. Today we learned how to care for the line at home. We discovered the tips of the line fit securely into a little knitted Sasktel cell phone case Arnie can wear around his neck.
We had a few days of free time earlier in the week to enjoy some pre-transplant tourism. The SCCA clinic gave us 2 free passes to visit the aquarium. Arnie learned about octopus mating and I got to pet a starfish. In typical Arnie fashion when the aquarium staff mentioned that the new eel fish hadn't eaten in the two weeks since it had arrived, he suggested they try the animals favorite food, sea urchin. They will add them to the menu on Monday. We also visited the zoo. It was quite cool that day, so we saw a wide variety of African and Asian animals huddling to keep warm. I thought the hippo's hind end was very impressive and I was able to piece together the lyrics for the Kookaburra song we learned in elementary school. (Kookaburra sits on the old gum tree.....) Once Arnie becomes immunocompromised next week; these two venues will be off limits for a full year.
Arnie and I have been walking a couple of miles each day to get a feel for our neighbourhood. We've seen pansies in bloom in sheltered planters. Yesterday I saw our first daffodils and tulips in bloom, again in selected warm sheltered locations. The other day we walked by the windows of a business crowded with computer-filled work cubicles. A sign posted on the window read "Please don't feed the geeks."
Take care.
Arnie & Brenda
Sunday, February 8, 2009
On the Home Front
We've had a few quiet days here and really don't have much to report. We've had an opportunity to walk the neighbourhood and have spotted a few small coffee shops, pubs and restaurants that look interesting. The main outlet for REI is about five blocks away. REI is just like Mountain Equipment Co-op so it has an abundance of rain gear and outdoor wear should we need to stock up. They have a huge climbing wall in the store and a landscaped bike trail just outside the front door. It looks like you are in a remote wooded area. The bike trail allows you to test drive bikes before you make a purchase. I'm enjoying the sense of being in the woods when I'm actually just a few blocks from home. We have rounded out our kitchen supplies with a trip to the nearby Safeway and are still trying to get used to the grocery stores having a huge selection of wine and beer.
Yesterday we had one last visit with Sandra and David Mandzuk and got to meet their son Will. What a great kid! He kept himself amused while we talked boring adult talk for hours. David has completed his treatment here in Seattle and they are packing to return to Saskatoon. They are so happy to be heading home and shared all kinds of tips and several boxes of handy supplies with us. We are praying Arnie's treatment is as successful as David's has been.
It's Sunday evening. We've been on the phone with my parents in Yorkton, Arnie's Mom in Regina and Eric & David in Saskatoon. Everyone is doing fine and it is wonderful to hear their voices. So in closing, here are photos of our handsome sons and their beautiful girlfriends. The photos are a few years old, but they make me smile.
(Eric & Krystle at Eric's convotation. David & Amy-Leigh enjoying a laugh.)
Arnie & Brenda
Yesterday we had one last visit with Sandra and David Mandzuk and got to meet their son Will. What a great kid! He kept himself amused while we talked boring adult talk for hours. David has completed his treatment here in Seattle and they are packing to return to Saskatoon. They are so happy to be heading home and shared all kinds of tips and several boxes of handy supplies with us. We are praying Arnie's treatment is as successful as David's has been.
It's Sunday evening. We've been on the phone with my parents in Yorkton, Arnie's Mom in Regina and Eric & David in Saskatoon. Everyone is doing fine and it is wonderful to hear their voices. So in closing, here are photos of our handsome sons and their beautiful girlfriends. The photos are a few years old, but they make me smile.
(Eric & Krystle at Eric's convotation. David & Amy-Leigh enjoying a laugh.)
Arnie & Brenda
Friday, February 6, 2009
Prescription Toothpaste & Bari Shakes
It's the end of another week of tests and procedures. We took the shuttle to the University of Washington Medical Centre on Thursday for a lumbar puncture. This can often result in a real pain in the head but, instead of pulling the cerebral spinal fluid out, they used gravity and let it drip out into the collection tubes. It takes longer but feels better. I now know what a Sugar Maple feels like in the spring.
Today was a CT Scan. When I asked for the traditional 'chalk water' used as a contrast media in Saskatoon, the nurse said they only have berry flavour and indeed they brought me a creamy thick berry smoothie (with barium and a chalk after taste). The breakfast of champions.
A few days ago, we saw the dentist at the clinic. They did a careful examination and pronounced my mouth in good shape. The dentist highly recommended an electric toothbrush and then gave me a prescription for toothpaste!! It has 10 times the fluoride of a regular store toothpaste, so watch out for my dazzling smile when I get home.
We've managed to drive out to the closest mall twice now to pick up supplies at Target. Our apartment has an adequate supply of dishware, pots and pans but we needed all the little extras like food storage containers, cutting boards, dishtowels, plastic wrap etc etc etc etc. Brenda had a tough day this week. She managed to set off the smoke alarm twice in one day, making toast both times! She's convinced the toaster is possessed.
We did manage to spend one lazy afternoon wandering through Pike's Market. It's a huge market on the waterfront, with a wide variety of shops, stores & boutiques. There was an abundance of fresh fish and seafood for sale and fresh produce at really good prices. There were some beautiful crafts and woodworking to look at as well. We went mid-week, so the market was fairly quiet. We enjoyed watching the fellows working the fish markets throw huge fish from the display case to the cashier when someone made a purchase. We will definitely be back.
So long for now.
Arnie & Brenda
Today was a CT Scan. When I asked for the traditional 'chalk water' used as a contrast media in Saskatoon, the nurse said they only have berry flavour and indeed they brought me a creamy thick berry smoothie (with barium and a chalk after taste). The breakfast of champions.
A few days ago, we saw the dentist at the clinic. They did a careful examination and pronounced my mouth in good shape. The dentist highly recommended an electric toothbrush and then gave me a prescription for toothpaste!! It has 10 times the fluoride of a regular store toothpaste, so watch out for my dazzling smile when I get home.
We've managed to drive out to the closest mall twice now to pick up supplies at Target. Our apartment has an adequate supply of dishware, pots and pans but we needed all the little extras like food storage containers, cutting boards, dishtowels, plastic wrap etc etc etc etc. Brenda had a tough day this week. She managed to set off the smoke alarm twice in one day, making toast both times! She's convinced the toaster is possessed.
We did manage to spend one lazy afternoon wandering through Pike's Market. It's a huge market on the waterfront, with a wide variety of shops, stores & boutiques. There was an abundance of fresh fish and seafood for sale and fresh produce at really good prices. There were some beautiful crafts and woodworking to look at as well. We went mid-week, so the market was fairly quiet. We enjoyed watching the fellows working the fish markets throw huge fish from the display case to the cashier when someone made a purchase. We will definitely be back.
So long for now.
Arnie & Brenda
Tuesday, February 3, 2009
Both Sides Now
I'm trying out the washer & drier tonight. It's the perfect activity to undertake while writing to you.
Today, Arnie & I attended a food safety course and a class on "managing your transplant at home" where we learned that bleach will soon be our new best friend. Tomorrow's schedule involves fasting bloodwork, a MUGA scan and an MRI plus a couple of consults to fill the day. This is typical of our time since arrival. The most invasive test thus far has been Arnie's bone marrow biopsy, last Friday. This can be a very uncomfortable test, and the team offers a variety of pain medications and anti-anxiety meds. Arnie prefers lots of local anesthetics to numb the area (backside/hip). The biopsy went very well and the lab tech was impressed with the number of 'spicules' they found. At SCCA, they biopsy the marrow of both hips. After the local anesthetics wore off, Arnie described the sensation like "being kicked repeatedly by heavy boots". He had a bilateral hobble for a few days, so climbing the hills around here was somewhat of a challenge.
We also met with the transplant coordinator last week to get a little more information on the stem cell donor. Arnie's donor is a (wonderful, generous) 20 year old male living somewhere in the U.S. He is a 10 out of 10 match for Arnie and has the same blood type (A). The donor is undergoing some final tests, and if everything goes well, he will donate peripheral blood stem cells on February 19th. The fresh cells will be flown to Seattle that day and given to Arnie. :)
On Monday afternoon, we took advantage of the 'drop-in labyrinth walk' at the SCCA. They use a giant cloth with a painted labyrinth, unrolled on the floor of a meeting room. The volunteer attendant was very excited to hear we had a labyrinth at our home church. In the evening we had a wonderful meal out with David and Sandra Mandzyk. They are very excited about their pending release and return to Canada and spent a good part of the evening passing on tips, tricks and other information they have gathered over the last four months. A driving tour of the city chauffeured by David capped the evening.
I think it's time to clean out the lint basket.
Talk to you soon.
Arnie & Brenda
Today, Arnie & I attended a food safety course and a class on "managing your transplant at home" where we learned that bleach will soon be our new best friend. Tomorrow's schedule involves fasting bloodwork, a MUGA scan and an MRI plus a couple of consults to fill the day. This is typical of our time since arrival. The most invasive test thus far has been Arnie's bone marrow biopsy, last Friday. This can be a very uncomfortable test, and the team offers a variety of pain medications and anti-anxiety meds. Arnie prefers lots of local anesthetics to numb the area (backside/hip). The biopsy went very well and the lab tech was impressed with the number of 'spicules' they found. At SCCA, they biopsy the marrow of both hips. After the local anesthetics wore off, Arnie described the sensation like "being kicked repeatedly by heavy boots". He had a bilateral hobble for a few days, so climbing the hills around here was somewhat of a challenge.
We also met with the transplant coordinator last week to get a little more information on the stem cell donor. Arnie's donor is a (wonderful, generous) 20 year old male living somewhere in the U.S. He is a 10 out of 10 match for Arnie and has the same blood type (A). The donor is undergoing some final tests, and if everything goes well, he will donate peripheral blood stem cells on February 19th. The fresh cells will be flown to Seattle that day and given to Arnie. :)
On Monday afternoon, we took advantage of the 'drop-in labyrinth walk' at the SCCA. They use a giant cloth with a painted labyrinth, unrolled on the floor of a meeting room. The volunteer attendant was very excited to hear we had a labyrinth at our home church. In the evening we had a wonderful meal out with David and Sandra Mandzyk. They are very excited about their pending release and return to Canada and spent a good part of the evening passing on tips, tricks and other information they have gathered over the last four months. A driving tour of the city chauffeured by David capped the evening.
I think it's time to clean out the lint basket.
Talk to you soon.
Arnie & Brenda
Monday, February 2, 2009
Life and Lawn Care
How wonderful to sign on tonight and read all your messages! Thank you all so much.
So much has happened over the past few days. We moved into our apartment on Saturday. It is a short 5 minute walk from the Seattle Cancer Care Alliance (SCCA) Clinic which is where we have all our outpatient appointments. The apartment couldn't be handier, although we do have to climb a steep hill to get to the end of the street. In fact, it seems everywhere we go involves climbing hills. It's quite an adjustment for prairie dwellers like us. Remember the old joke....'When I was a child we walked miles to school and it was uphill both ways.' Well....the walk from our apartment to the clinic is truly uphill both ways. The apartment is furnished and has all the basics we need. I do wish I had remembered Brenda Skerett's advice to bring along my favorite knife and frying pan when I packed to come. We had a bit of confusion regarding our apartment phone. It is (206) 264-1943. Please remember there is a 2 hour time difference between Saskatchewan and Seattle.
The weather continues to be sunny and very mild here. We're quite comfortable wearing a light jacket and sweater. We've had very little rain since our arrival. Arnie is experiencing his first side-effect since moving here. The humidity from being near the ocean makes his hair very curly.
We had an appointment with our tranplant physician the other day. She spent 90 minutes with us, explaining the transplant process planned for Arnie and answering all our questions. We are definitely in caring, capable hands.
Arnie is scheduled for a 'mixed chimeric' or 'mini' tranplant. In this type of transplant, the stem cells will be donated by an unrelated person. Arnie will receive a moderate dose of chemotherapy and radiation to eliminate his cancer and damage his own immune system. He will then receive donated stem cells which will settle into his bone marrow and form a new immune system. The goal of the new immune system is to have the donor cells attack the cancer and keep it in check. The 'mixed chimeric' transplant is a type of allogeneic transplant because it involves transplanting stem cells donated by an unrelated individual but the conditioning chemotherapy and radiation is less intensive than the typical allogeneic transplant. The chief benefit of the mini transplant is the milder pre-transplant chemo and radiation which should make the complications and side effects milder as well. In fact, the plan is to do all of Arnie's care as an outpatient.
Arnie likens the process to redoing the lawn. A full allogeneic transplant would bring in a bobcat to remove all the sod, leave the barren soil and then seed the new lawn. A mixed chimeric transplant or mini transplant is more like spraying weed-killer over the old lawn, allowing the weeds and quack grass to die off and then reseeding. With proper care and attention, the new grass will grow in and sqeeze out the weeds.
Our transplant physician described the full allogeneic transplant as 'the full meal deal' and the mini transplant as the 'happy meal'. Both types of transplants cause the patient to develop 'graft-versus-host disease', but more about that another time.
When was the last time anyone thought of Arnie and mini together? The times they are a-changin'.
Enough technical talk for one night.
Thanks so much for your caring thoughts and prayers. We love you all.
Arnie & Brenda
So much has happened over the past few days. We moved into our apartment on Saturday. It is a short 5 minute walk from the Seattle Cancer Care Alliance (SCCA) Clinic which is where we have all our outpatient appointments. The apartment couldn't be handier, although we do have to climb a steep hill to get to the end of the street. In fact, it seems everywhere we go involves climbing hills. It's quite an adjustment for prairie dwellers like us. Remember the old joke....'When I was a child we walked miles to school and it was uphill both ways.' Well....the walk from our apartment to the clinic is truly uphill both ways. The apartment is furnished and has all the basics we need. I do wish I had remembered Brenda Skerett's advice to bring along my favorite knife and frying pan when I packed to come. We had a bit of confusion regarding our apartment phone. It is (206) 264-1943. Please remember there is a 2 hour time difference between Saskatchewan and Seattle.
The weather continues to be sunny and very mild here. We're quite comfortable wearing a light jacket and sweater. We've had very little rain since our arrival. Arnie is experiencing his first side-effect since moving here. The humidity from being near the ocean makes his hair very curly.
We had an appointment with our tranplant physician the other day. She spent 90 minutes with us, explaining the transplant process planned for Arnie and answering all our questions. We are definitely in caring, capable hands.
Arnie is scheduled for a 'mixed chimeric' or 'mini' tranplant. In this type of transplant, the stem cells will be donated by an unrelated person. Arnie will receive a moderate dose of chemotherapy and radiation to eliminate his cancer and damage his own immune system. He will then receive donated stem cells which will settle into his bone marrow and form a new immune system. The goal of the new immune system is to have the donor cells attack the cancer and keep it in check. The 'mixed chimeric' transplant is a type of allogeneic transplant because it involves transplanting stem cells donated by an unrelated individual but the conditioning chemotherapy and radiation is less intensive than the typical allogeneic transplant. The chief benefit of the mini transplant is the milder pre-transplant chemo and radiation which should make the complications and side effects milder as well. In fact, the plan is to do all of Arnie's care as an outpatient.
Arnie likens the process to redoing the lawn. A full allogeneic transplant would bring in a bobcat to remove all the sod, leave the barren soil and then seed the new lawn. A mixed chimeric transplant or mini transplant is more like spraying weed-killer over the old lawn, allowing the weeds and quack grass to die off and then reseeding. With proper care and attention, the new grass will grow in and sqeeze out the weeds.
Our transplant physician described the full allogeneic transplant as 'the full meal deal' and the mini transplant as the 'happy meal'. Both types of transplants cause the patient to develop 'graft-versus-host disease', but more about that another time.
When was the last time anyone thought of Arnie and mini together? The times they are a-changin'.
Enough technical talk for one night.
Thanks so much for your caring thoughts and prayers. We love you all.
Arnie & Brenda
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