Celebrate the day!
Thursday, October 31, 2013
Friday, October 25, 2013
Bob's voice: Mewlings from Savoy
One month post stem cell transplantation!
The “Wizard of Oz” used an interesting cinematographic technique by
commencing and ending with the mundane scenes from Kansas in
black-and-white, whereas the fantastic middle portion utilized brilliant
and sharply contrasting colored scenes. My amazing adventure into and
through the valley of the shadow of death was colored in just the
opposite manner. Those portions of my treatment prior and subsequent to
the transplantation were vividly colorized, whereas the hospitalization
was as bleak as the setting of Babette’s Feast or southern Sweden as
filmed in the Wallander series. The anticipation of the transplant was
as classical an example of an approach-avoidance conflict as marriage.
Once the hemlock was administered, there could be no turning back. But
my engraftment was swift and dramatic, allowing me to be discharged
about 5 days earlier than most other patients. I rested for several days
in the hotel in St. Louis before our daughters flew in from Burlington
and Las Vegas. We were rewarded with spectacular weather which we
enjoyed during afternoons in the botanical gardens and the world famous
zoo and at sidewalk cafes on “The Hill,” the Italian section of St.
Louis, and throughout the Central West End District adjacent to the
hospital and our hotel. I forgot to buy a baseball cap and so my newly
bald head was sunburned. Ceiling lights reflected on my reddened scalp
giving my short gray hairs an eerie pink cast, making me think of myself
as an Easter chickee peep. My grandson, Noah, who is a freshman at
Washington University in St Louis, gave me a Wash U cap which I both
needed and wanted.
The wonderful world of bright colors
resumed upon discharge from the hospital to the hotel. I had feared that
the chemotherapy had killed my taste buds until I had my first
wonderful meal with pasta and butterflied shrimp on the Hill, al fresco,
toasting in the afternoon sun. The bland hospital food had nearly bored
my taste buds to death, but they had not died. Meals thereafter became
the highlight of my days and evenings. The drive back to Savoy included
the plethora of colors from the autumn leaves and the ripening crops. I
had safely navigated the most treacherous part of my cancer journey,
with the assistance of many prayers and kind thoughts from so many
caring friends.
But now the colors are different, not as
vibrant as before. I realize that I have been changed by this
experience. I look at life a little more seriously now and am less free
with my rapier wit and invaluable opinions about everything.
Sunday, October 20, 2013
Saturday, October 19, 2013
We're home and resting - Day +25
I'm doing laundry in our own machines and watching the college football games on our big screen TV. Life is good.
We drove to Savoy on the 16th and I was so tired, physically and emotionally, that I missed our exit. I didn't really need those additional miles to the airport. Ah, but how good it was to finally be home. Bob collapsed into bed, and after I unpacked the car, so did I. Heaven.
I've been running needed errands while Bob pays the bills. When we're tired, we stop and catch up on our HBO and Showtime series. Little Snickers, Zoe's best friend, who is acting as nurse and grief counselor, has visited two days, and so we get outside to walk her and enjoy the cooler temperatures and falling leaves. We're getting back into a few routines.
Truly, there is no place like home.
We drove to Savoy on the 16th and I was so tired, physically and emotionally, that I missed our exit. I didn't really need those additional miles to the airport. Ah, but how good it was to finally be home. Bob collapsed into bed, and after I unpacked the car, so did I. Heaven.
I've been running needed errands while Bob pays the bills. When we're tired, we stop and catch up on our HBO and Showtime series. Little Snickers, Zoe's best friend, who is acting as nurse and grief counselor, has visited two days, and so we get outside to walk her and enjoy the cooler temperatures and falling leaves. We're getting back into a few routines.
Truly, there is no place like home.
Tuesday, October 15, 2013
Great News - Day +21
It was back across the bridge and into the medical complex again. Bob had a blood draw, and we met with his physician 45 minutes later. It was all good news. The Keebler elves are still in overdrive, and Bob was told that it was safe for him to return to Savoy. Packing and jumping for joy! Oh, to be in our own bed...
Monday, October 14, 2013
It's a family affair - Day +16 to Day +20
Bethany arrived in St. Louis from Vermont on Wednesday the 9th (day +16), and the three of us caught up over an Italian dinner at Anthonino's. The next day we ambled through the Missouri Botanical Garden. The fall colors still hadn't much appeared, but other signs of the changing season were evident. We found some fountains turned off and drained and Christmas lights being hung high in the trees.
Amy's plane from Las Vegas came in that evening. The sisters shared a corner room with two views, including one of the downtown and Arch. They also had the good treats - wine and Amy's homemade cookies - so we dubbed it "party central."
Friday afternoon (day +18) we expected the St. Louis Zoo to be quiet, but the school children must have had the day off because there were families everywhere. From the bales of hay, plenitude of pumpkins, and gigantic inflatable black cat, the fall and Halloween decorations were abundant. We strolled through the habitats of the "lions, tigers, and bears," the monkeys and apes, and the zebras and giraffes before Bob finally admitted that he was tired.
Yes, tired. Over these two days, he'd done an incredible amount of walking compared to his usual three laps around the hospital floor. He also hadn't brought a cap with him to St. Louis and refused to buy one or some sunscreen, so his hair-challenged head, having never seen the light of day, became a bit sunburned. The pink of his head made his white fuzz look pink too, and he called himself a "pink chickie PeeP." We decided to "dine in" that evening and ordered two small deep-dish pizzas to go from Pi Restaurant at 400 N. Euclid. One was the south side classico with mozzarella, sausage, mushrooms, green bell peppers, and onions, and the other was the kirkwood with mozzarella, Italian meatballs, red peppers, and basil. The pizza has won many awards and the company claims that it's President Obama's favorite, and it was good but not as good as Papa Del's in Champaign.
Amy had a wedding in Champaign that she wanted to attend on Saturday afternoon, and she and I drove north. While she enjoyed her friends, I was able to clean to make the house Bob-friendly (dust free). Sunday before we trekked back to St. Louis we visited with Dave and Kathy to wish them a happy 17th anniversary, and stopped by Kent and Lana's to give our birthday wishes to Kent.
Meanwhile, Bethany got to see Noah start in the Washington University varsity soccer game. Bob and she were able to share time and meals with Noah over the weekend. And, Noah gifted Papa Bob with a Wash U cap that Bob badly needed and loves.
Bethany flew back home Sunday afternoon, and Amy left a few hours later. Then Bob fell into bed. He slept for twelve hours, was up for less than an hour, and then slept five more hours. Yes, he admitted he was tired but said it was all such fun that he wouldn't have changed a thing.
Amy's plane from Las Vegas came in that evening. The sisters shared a corner room with two views, including one of the downtown and Arch. They also had the good treats - wine and Amy's homemade cookies - so we dubbed it "party central."
Friday afternoon (day +18) we expected the St. Louis Zoo to be quiet, but the school children must have had the day off because there were families everywhere. From the bales of hay, plenitude of pumpkins, and gigantic inflatable black cat, the fall and Halloween decorations were abundant. We strolled through the habitats of the "lions, tigers, and bears," the monkeys and apes, and the zebras and giraffes before Bob finally admitted that he was tired.
Yes, tired. Over these two days, he'd done an incredible amount of walking compared to his usual three laps around the hospital floor. He also hadn't brought a cap with him to St. Louis and refused to buy one or some sunscreen, so his hair-challenged head, having never seen the light of day, became a bit sunburned. The pink of his head made his white fuzz look pink too, and he called himself a "pink chickie PeeP." We decided to "dine in" that evening and ordered two small deep-dish pizzas to go from Pi Restaurant at 400 N. Euclid. One was the south side classico with mozzarella, sausage, mushrooms, green bell peppers, and onions, and the other was the kirkwood with mozzarella, Italian meatballs, red peppers, and basil. The pizza has won many awards and the company claims that it's President Obama's favorite, and it was good but not as good as Papa Del's in Champaign.
Amy had a wedding in Champaign that she wanted to attend on Saturday afternoon, and she and I drove north. While she enjoyed her friends, I was able to clean to make the house Bob-friendly (dust free). Sunday before we trekked back to St. Louis we visited with Dave and Kathy to wish them a happy 17th anniversary, and stopped by Kent and Lana's to give our birthday wishes to Kent.
Meanwhile, Bethany got to see Noah start in the Washington University varsity soccer game. Bob and she were able to share time and meals with Noah over the weekend. And, Noah gifted Papa Bob with a Wash U cap that Bob badly needed and loves.
Bethany flew back home Sunday afternoon, and Amy left a few hours later. Then Bob fell into bed. He slept for twelve hours, was up for less than an hour, and then slept five more hours. Yes, he admitted he was tired but said it was all such fun that he wouldn't have changed a thing.
Wednesday, October 9, 2013
Life on the outside, Day +16
It is wonderful having Bob back in the hotel room with me. Life seems as it should be! He spent the first days sleeping a lot. Perhaps it was the relief of having the transplant behind him, but we also wondered if he had switched day and night (easy to do in the hospital). Sunday while I spent the afternoon with my dear cousins Nan and Jean (the YaYas) at the Missouri Botanical Garden, Bob concentrated on staying upright, and it seems to have helped.
It was a perfect sunny afternoon at the Garden, in the 60s, and the Best of Missouri was displayed in huge outdoor tents, everything from pottery to chocolates to lawn art and mink teddy bears. I did think Bob needed some of the dark chocolate coffee bark from a local chocolatier, Kakao Chocolate (www.kakaochocolate.com). Yum, artisan chocolate at its best.
For the most part, we women ventured through the garden following no particular route, just strolling toward anything that caught our eyes. Various divisions include children's, boxwood, rose, home, Victorian, Japanese, and so on. There are numerous sculptures and water features. It is absolutely lovely, and I'm hoping for a return visit tomorrow with Bob and Bethany.
Jean brought hair clippers with her and when we got back to the hotel, I gave Bob a prison-like crewcut. Not the best. He's not had hanks of hair fall out, but he is doing some good shedding (we need to quit wearing dark clothes:-). The doctor assured him that he would not escape losing his hair, so we decided on a preemptive course of action. He looks great but needs a little sunshine on his scalp.
Monday, Day +14, was the earliest date we thought Bob would be released from the hospital. Instead, it was the first of many celebrations. St. Louis has an area south of I-44 (south of Forest Park) called The Hill. It's an Italian neighborhood with family-owned restaurants on many of the corners. Kathryn recommended Anthonino's Taverna (www.anthoninos.com, 2225 Macklind Ave.), where authentic Italian and Greek food is served. It has even been visited by TV's Guy Fieri. We went early, 4:00 p.m., sat at an outside table in the sun, and enjoyed an indescribably delicious dinner.
We were back to the Siteman Cancer Center for Bob's follow-up visit on Tuesday. Blood tests first and then a meeting with his physician's nurse practitioner. Those Keebler elves are continuing to work overtime to produce the blood cells that Bob needs. The medical team had set up a platelet transfusion for him that he didn't even require! Instead he was sent to Interventional Radiology to have his catheter/port removed, a more involved procedure than either of us anticipated, but all went fine. (No more Press 'n Seal with loads of tape to keep it covered during Bob's showers.) We also had prescriptions to pick up at two different pharmacies, and a very nice lady in optical fixed his bent glasses' arm from when he had rolled over on it in the hospital.
In the evening we stayed in the Central West End and walked to the Brasserie (4580 Laclede Ave., www.brasseriebyniche.com) for dinner. Again, we sat outside at the end of a row of tables. Everything seemed to be authentically French from the round cafe tables and black and tan woven chairs outside to the dress of the wait staff as well as the preparation and presentation of the food. Bob had the braised beef, carrots, bacon, horseradish, mint, potato puree, while I indulged in the roasted chicken, mushrooms, bread, jus. Both delicious. And we even feasted on dessert: caramel pecan tart with brown butter ice cream for Bob, and chocolate mousse with hazelnut shortbread for me. A very romantic celebration.
Unfortunately, Bob was reminded of the treatment he'd received and was up with nausea, reflux, and gastro distress throughout the night. We had been told that his recovery would be like this - peaks and valleys - but in the larger picture this is small potatoes.
We're looking forward to Bethany's arrival late this afternoon, and the celebrations will continue.
It was a perfect sunny afternoon at the Garden, in the 60s, and the Best of Missouri was displayed in huge outdoor tents, everything from pottery to chocolates to lawn art and mink teddy bears. I did think Bob needed some of the dark chocolate coffee bark from a local chocolatier, Kakao Chocolate (www.kakaochocolate.com). Yum, artisan chocolate at its best.
For the most part, we women ventured through the garden following no particular route, just strolling toward anything that caught our eyes. Various divisions include children's, boxwood, rose, home, Victorian, Japanese, and so on. There are numerous sculptures and water features. It is absolutely lovely, and I'm hoping for a return visit tomorrow with Bob and Bethany.
Jean brought hair clippers with her and when we got back to the hotel, I gave Bob a prison-like crewcut. Not the best. He's not had hanks of hair fall out, but he is doing some good shedding (we need to quit wearing dark clothes:-). The doctor assured him that he would not escape losing his hair, so we decided on a preemptive course of action. He looks great but needs a little sunshine on his scalp.
Monday, Day +14, was the earliest date we thought Bob would be released from the hospital. Instead, it was the first of many celebrations. St. Louis has an area south of I-44 (south of Forest Park) called The Hill. It's an Italian neighborhood with family-owned restaurants on many of the corners. Kathryn recommended Anthonino's Taverna (www.anthoninos.com, 2225 Macklind Ave.), where authentic Italian and Greek food is served. It has even been visited by TV's Guy Fieri. We went early, 4:00 p.m., sat at an outside table in the sun, and enjoyed an indescribably delicious dinner.
We were back to the Siteman Cancer Center for Bob's follow-up visit on Tuesday. Blood tests first and then a meeting with his physician's nurse practitioner. Those Keebler elves are continuing to work overtime to produce the blood cells that Bob needs. The medical team had set up a platelet transfusion for him that he didn't even require! Instead he was sent to Interventional Radiology to have his catheter/port removed, a more involved procedure than either of us anticipated, but all went fine. (No more Press 'n Seal with loads of tape to keep it covered during Bob's showers.) We also had prescriptions to pick up at two different pharmacies, and a very nice lady in optical fixed his bent glasses' arm from when he had rolled over on it in the hospital.
In the evening we stayed in the Central West End and walked to the Brasserie (4580 Laclede Ave., www.brasseriebyniche.com) for dinner. Again, we sat outside at the end of a row of tables. Everything seemed to be authentically French from the round cafe tables and black and tan woven chairs outside to the dress of the wait staff as well as the preparation and presentation of the food. Bob had the braised beef, carrots, bacon, horseradish, mint, potato puree, while I indulged in the roasted chicken, mushrooms, bread, jus. Both delicious. And we even feasted on dessert: caramel pecan tart with brown butter ice cream for Bob, and chocolate mousse with hazelnut shortbread for me. A very romantic celebration.
Unfortunately, Bob was reminded of the treatment he'd received and was up with nausea, reflux, and gastro distress throughout the night. We had been told that his recovery would be like this - peaks and valleys - but in the larger picture this is small potatoes.
We're looking forward to Bethany's arrival late this afternoon, and the celebrations will continue.
Tuesday, October 8, 2013
Now, a political message
My post to "The Office of John Boehner" Facebook page:
You've discussed all of this to death. Bring it to a vote. We want the government up and running and our country's debt paid. Now, throw out the tea and try some coffee.
I welcome you to post, too.
You've discussed all of this to death. Bring it to a vote. We want the government up and running and our country's debt paid. Now, throw out the tea and try some coffee.
I welcome you to post, too.
Friday, October 4, 2013
Blessed, Day +11
October 4th has been a sad day for me since my mother passed away on this date. However, now it holds a new and better memory as it is the day Bob was released from the hospital following his stem cell transplant! It's now a jump for joy day.
Nurse Kathryn gave Bob his stem cell transplant and was the one to discharge him from the hospital. His blood tests showed another big jump:
white blood cells - 10.9
absolute neutrophil count - 9701
platelets - 40
A day of thanksgiving. A day of hugs to nurses. A day of best wishes to those still receiving treatment.
Time to leave and continue recovery in a St. Louis hotel room.
Blessed.
Nurse Kathryn gave Bob his stem cell transplant and was the one to discharge him from the hospital. His blood tests showed another big jump:
white blood cells - 10.9
absolute neutrophil count - 9701
platelets - 40
A day of thanksgiving. A day of hugs to nurses. A day of best wishes to those still receiving treatment.
Time to leave and continue recovery in a St. Louis hotel room.
Blessed.
Thursday, October 3, 2013
Look at the numbers, Day +10
Day White Blood Count Neutrophils Platelets
+6 0.1 35
+7 0.1 0 22
+8 0.3 0 9
+9 0.6 30 31
+10 5.1 4335 32
+6 0.1 35
+7 0.1 0 22
+8 0.3 0 9
+9 0.6 30 31
+10 5.1 4335 32
ENGRAFTMENT!!!
Bob may be moving in with me at the hotel tomorrow where his recovery will continue.
God is good. Amen.
Wednesday, October 2, 2013
The Best Day Yet, Day +9
Best day yet! As soon as Bob awakened, he felt like it was going to be a good day. He did his laps around the floor, his self-imposed motivation to "earn" that first cup of coffee. While sipping it in the family lounge, he chatted with a patient's husband, hearing about the plans this thirtysomething couple is making for the next year. He added a few pieces to the puzzle we're enjoying working on there - a White Mountain Puzzle entitled Lunch Boxes, that includes everything nostalgic from Care Bears to I Love Lucy to Flipper.
Back at the room, he called me and found out that David was on his way to St. Louis, an unexpected surprise. And, so the day went. In the afternoon, we attended a meeting for patients and their families called Recovery that discussed the information we had received in printed form about Bob's life after the hospital. Let's see...no driving, no feta or blue cheese, no live cultures in yogurt, no drinking...but these are all temporary and in the small potatoes category after what he has been through.
Before Dave left, he walked to Tortillaria Mexican Kitchen (8 1/2 S. Euclid) and picked up dinner for us. We enjoyed a gracious plenty, from chips and salsa to tacos. Bob and I feasted on our favorite Caribbean Shrimp Tacos but without the margaritas. After this nourishment, Bob challenged his next-door-neighbor to three laps and then settled for the evening.
It was a day of joy. It was a taste of the future. Thank you, thank you, thank you. Amen.
Back at the room, he called me and found out that David was on his way to St. Louis, an unexpected surprise. And, so the day went. In the afternoon, we attended a meeting for patients and their families called Recovery that discussed the information we had received in printed form about Bob's life after the hospital. Let's see...no driving, no feta or blue cheese, no live cultures in yogurt, no drinking...but these are all temporary and in the small potatoes category after what he has been through.
Before Dave left, he walked to Tortillaria Mexican Kitchen (8 1/2 S. Euclid) and picked up dinner for us. We enjoyed a gracious plenty, from chips and salsa to tacos. Bob and I feasted on our favorite Caribbean Shrimp Tacos but without the margaritas. After this nourishment, Bob challenged his next-door-neighbor to three laps and then settled for the evening.
It was a day of joy. It was a taste of the future. Thank you, thank you, thank you. Amen.
Tuesday, October 1, 2013
And so it goes, Day +8
There are many days I don't go outside. I take the third floor walkway from the hotel to the hospital parking garage, continue across the walkway over Euclid Avenue into the Center for Advanced Medicine (CAM), and finally end up in Barnes-Jewish Hospital North. Then I take the elevator to the 5th floor, Stem Cell Transplants and Leukemia. When I'm lucky I hear musicians serenading all of us from their first floor position at the bottom of the atrium in the CAM. One late night I caught two male hospital employees in blue scrubs playing piano. I cheered them on.
The temperatures in St. Louis have been at least ten degrees above normal most days with clear skies. But outside Bob's window is a tree that tells us fall is on its way. A couple of days ago I noticed a small patch of leaves had turned from green to red. Only a couple of other leaves have joined them, but perhaps we'll see more when it becomes cooler on Sunday.
If you picture a bell curve and then flip it upside down, Bob is right at the bottom. His absolute neutrophilic count is 0. (Neutrophils, a common type of white blood cell, are essential for fighting disease. Normal is over 1,000.) His white blood count is 0.1. (Normal is 5-10.) His platelets, which help clot blood, measure at 22,000. (Normal is 150,000-450,000.) His hemoglobin, which carries oxygen to the blood, is at 9.2 (instead of 12-16), and his hematocrit is 27.5 (instead of 36-45). The melphalan has done its job.
Bob has been receiving growth factor shots each day since Day +5, just like he did before the apheresis to stimulate stem cell development. Today he received his first transfusion ever, a bag of platelets. The bag looked like it held thick chicken noodle soup without the chicken or the noodles!
Only occasionally does Bob search for a word as he's speaking, a sign of chemo brain or chemo fog. It's extremely common. He also is having some difficulty maintaining his blood pressure when he stands up. It seems there is a very fine line between his intake and output of liquids so that his pressure is high enough but he doesn't have swelling in his legs and feet. He's being as careful as he can and has had no falls (although he is embarrassed by having to wear a yellow bracelet that says FALL RISK. He calls it his gomer bracelet.). Other than these specific things, he just has a general feeling of malaise and fatigue and continues to be bothered with the pain from the neuropathy.
I have nicknamed him Captain Courageous. (Yes, I know the real title of the book is Captains Courageous and the plot summary doesn't fit but the name sure does.) He has met all of this head on with an optimistic attitude and without whining. And, you won't be surprised by this, he has enamored himself with all of the staff and some of the patients. He teases and jokes and extracts their life stories, and soon they seem like friends. He's in his element and fighting for his life.
The temperatures in St. Louis have been at least ten degrees above normal most days with clear skies. But outside Bob's window is a tree that tells us fall is on its way. A couple of days ago I noticed a small patch of leaves had turned from green to red. Only a couple of other leaves have joined them, but perhaps we'll see more when it becomes cooler on Sunday.
If you picture a bell curve and then flip it upside down, Bob is right at the bottom. His absolute neutrophilic count is 0. (Neutrophils, a common type of white blood cell, are essential for fighting disease. Normal is over 1,000.) His white blood count is 0.1. (Normal is 5-10.) His platelets, which help clot blood, measure at 22,000. (Normal is 150,000-450,000.) His hemoglobin, which carries oxygen to the blood, is at 9.2 (instead of 12-16), and his hematocrit is 27.5 (instead of 36-45). The melphalan has done its job.
Bob has been receiving growth factor shots each day since Day +5, just like he did before the apheresis to stimulate stem cell development. Today he received his first transfusion ever, a bag of platelets. The bag looked like it held thick chicken noodle soup without the chicken or the noodles!
Only occasionally does Bob search for a word as he's speaking, a sign of chemo brain or chemo fog. It's extremely common. He also is having some difficulty maintaining his blood pressure when he stands up. It seems there is a very fine line between his intake and output of liquids so that his pressure is high enough but he doesn't have swelling in his legs and feet. He's being as careful as he can and has had no falls (although he is embarrassed by having to wear a yellow bracelet that says FALL RISK. He calls it his gomer bracelet.). Other than these specific things, he just has a general feeling of malaise and fatigue and continues to be bothered with the pain from the neuropathy.
I have nicknamed him Captain Courageous. (Yes, I know the real title of the book is Captains Courageous and the plot summary doesn't fit but the name sure does.) He has met all of this head on with an optimistic attitude and without whining. And, you won't be surprised by this, he has enamored himself with all of the staff and some of the patients. He teases and jokes and extracts their life stories, and soon they seem like friends. He's in his element and fighting for his life.
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