When I checked in to Hotel Hope, I was like a good Boy Scout - hoping for the best but preparing for the worst.
Given my past history of slacker blood rebounding and near disastrous stem cell harvesting, it was realistic for Dr. Forman and me to expect a four to five week stay at Hotel Hope.
So how do you explain the fact that I'm home after just three weeks? I know that there are hundreds of people praying and thinking good thoughts for me - many are dear friends, others are friends of friends, but many more are complete strangers.
I'm humbled by and grateful to all of you.
Friday, November 30, 2007
Home Sleep Home
No, that's not a typo. The sweetest thing about being home again is the sleep.
I realize now that my need for daytime ZZZs had little to do with the killer chemo or low blood counts. I was feeling the cumulative effects of three weeks of sleep deprivation.
During week one, staff monitored my vital signs every 30 minutes on at least three nights. The other nights were interrupted with heavy-duty nausea and/or throwing up until I received sleep-inducing doses of Benadryl or Atavan. Sleep often came in 20 minute increments, if it came at all.
During week two, my physical health improved significantly. I no longer needed continuous monitoring of vitals, and the worst of the nausea had passed. But run-of-the-mill insomnia set in. I couldn't turn off my racing brain after my head hit the pillow. I fixated on family issues, such as "Can an 18-year-old daughter die from a steady diet of Spaghetti-Os?"
From there, I'd move on to the "I wonder" fixation category. "I wonder when 20th Century Fox became just Fox? (Or did it?)" "I wonder if they thought about becoming 21st Century Fox?" "I wonder if the name 2oth Century Fox had a modern ring when it was first conceived." Before I knew it, the nurse was in for my 4:00 am blood draw, and I realized I hadn't slept a wink. (These may be interesting questions, but hardly worth losing sleep over.)
By week three, I'd learned how to turn off my racing brain. I fell asleep by 11:30 pm and slept peacefully. That is until I received a "bladder call" three to six times a night. Or vital checks twice a night. Or the 4:00 am blood draw. Or a beeping IV pole at least twice a night. My sleep was interrupted anywhere from eight to 12 times a night.
Rita, a fellow hematology patient in my exercise class, told us that her husband came to spend three nights with her. After the first night of continuous interruptions, he decided to sleep in his truck on nights two and three. I'm not surprised that he got a better night's sleep in a truck than a hospital room.
Now I'm enjoying the benefits of home, sleep home. An hour after returning from Hotel Hope, I settled in for a one-hour nap from 5:00 to 6:00 pm. I fell asleep by 11:00 pm and, still programmed for the 4:00 am blood draw, woke up at 3:45 am. I answered a bladder call and fell immediately back to sleep again until 7:30 this morning.
Sweet, deep, uninterrupted sleep. There's nothing like it.
I realize now that my need for daytime ZZZs had little to do with the killer chemo or low blood counts. I was feeling the cumulative effects of three weeks of sleep deprivation.
During week one, staff monitored my vital signs every 30 minutes on at least three nights. The other nights were interrupted with heavy-duty nausea and/or throwing up until I received sleep-inducing doses of Benadryl or Atavan. Sleep often came in 20 minute increments, if it came at all.
During week two, my physical health improved significantly. I no longer needed continuous monitoring of vitals, and the worst of the nausea had passed. But run-of-the-mill insomnia set in. I couldn't turn off my racing brain after my head hit the pillow. I fixated on family issues, such as "Can an 18-year-old daughter die from a steady diet of Spaghetti-Os?"
From there, I'd move on to the "I wonder" fixation category. "I wonder when 20th Century Fox became just Fox? (Or did it?)" "I wonder if they thought about becoming 21st Century Fox?" "I wonder if the name 2oth Century Fox had a modern ring when it was first conceived." Before I knew it, the nurse was in for my 4:00 am blood draw, and I realized I hadn't slept a wink. (These may be interesting questions, but hardly worth losing sleep over.)
By week three, I'd learned how to turn off my racing brain. I fell asleep by 11:30 pm and slept peacefully. That is until I received a "bladder call" three to six times a night. Or vital checks twice a night. Or the 4:00 am blood draw. Or a beeping IV pole at least twice a night. My sleep was interrupted anywhere from eight to 12 times a night.
Rita, a fellow hematology patient in my exercise class, told us that her husband came to spend three nights with her. After the first night of continuous interruptions, he decided to sleep in his truck on nights two and three. I'm not surprised that he got a better night's sleep in a truck than a hospital room.
Now I'm enjoying the benefits of home, sleep home. An hour after returning from Hotel Hope, I settled in for a one-hour nap from 5:00 to 6:00 pm. I fell asleep by 11:00 pm and, still programmed for the 4:00 am blood draw, woke up at 3:45 am. I answered a bladder call and fell immediately back to sleep again until 7:30 this morning.
Sweet, deep, uninterrupted sleep. There's nothing like it.
Thursday, November 29, 2007
Let Sleeping Dogs Lie
With my newly reinfused stem cells, I have the immune system of a baby. To protect that infant immune system, my nurse practitioner, Barbara, went over my discharge instructions - the lists of daily dos and dont's. I plan to follow the instructions to a Tee because I don't want a repeat visit to Hotel Hope.
I do, however, have trouble with one of the guidelines:
I'd love to hear from other pet-loving post-transplanters, both auto and allo. How have you handled the "close physical contact" clause? And how do you kick out a dog from its "rightful" place at the foot of the bed?
If you don't feel comfortable leaving a comment, please email me directly at susancarrier@sbcglobal.net.
Thanks in advance from me and the Carrier family pets for any advice you can provide.
UPDATE: I just spoke with Dr. Forman, and he said that this is not an "absolute" since my white counts are high. I just have to make sure that I'm vigilant about washing my hands and that I avoid "kissy kissy" with Betty. I'd still love to hear other pet stories.
I do, however, have trouble with one of the guidelines:
"If pets are allowed to stay with you, you should avoid close physical contact with them and they should not sleep in the same room with you."First of all, what's the point of having pets if you have to "avoid close physical contact." Second, our dog, Betty, has slept at the foot of our bed for 11 years. Our cat Heather likes to sleep curled up near my face. (Tiger chooses not to join the family bed.)
I'd love to hear from other pet-loving post-transplanters, both auto and allo. How have you handled the "close physical contact" clause? And how do you kick out a dog from its "rightful" place at the foot of the bed?
If you don't feel comfortable leaving a comment, please email me directly at susancarrier@sbcglobal.net.
Thanks in advance from me and the Carrier family pets for any advice you can provide.
UPDATE: I just spoke with Dr. Forman, and he said that this is not an "absolute" since my white counts are high. I just have to make sure that I'm vigilant about washing my hands and that I avoid "kissy kissy" with Betty. I'd still love to hear other pet stories.
Wednesday, November 28, 2007
Got Platelets?
This is a first. I need platelets again today, but my nurse informed me this morning that there's a shortage and I'll have to wait until the hospital gets a fresh supply. The need is dire, both at City of Hope and at the local Red Cross.
Click here to find how you can spend two hours of time to help relieve the shortage. (And if you can designate the platelets for me, I won't have to worry about this happening in the future.)
City of Hope may not offer the same luxury service offered by UCLA (as described in an earlier comment from Margaret), but you can be assured of the following perks:
Click here to find how you can spend two hours of time to help relieve the shortage. (And if you can designate the platelets for me, I won't have to worry about this happening in the future.)
City of Hope may not offer the same luxury service offered by UCLA (as described in an earlier comment from Margaret), but you can be assured of the following perks:
- A wide selection of savory or sweet snacks and fruit juices
- A warm blanket
- A video screened on your own private TV
- A City of Hope Blood Bowl T-Shirt
- A $5 In N Out git certificate and movie coupon for AMC Theatres OR a pint of ice cream from Baskin Robbins
- The chance to win dinner for two at Outback Steakhouse (before November 30)
- A "get out of housework" (or cooking or any other chore you abhor) free card (It's every bit as good as the "cancer card.")
- My undying gratitude
Elf Yourself
George has long had a secret fantasy about becoming an elf. Thanks to Elf Yourself, his dream has come true.
Click here to watch the Carrier family elves. (This takes a few seconds to download.)
You're not seeing double if you think you see two Smookie elves - one with short hair and glasses and the other with long hair (a wig) and no glasses. I was experimenting with different photos and couldn't figure out how to delete one.
Click here to watch the Carrier family elves. (This takes a few seconds to download.)
You're not seeing double if you think you see two Smookie elves - one with short hair and glasses and the other with long hair (a wig) and no glasses. I was experimenting with different photos and couldn't figure out how to delete one.
Special Die(t)
I could have died when I got the word from my dietitian yesterday: NO restaurant or take-out food for one month after discharge. I'll have to continue my quest for the best dim sum, Chinese tea house and banh mi (Vietnamese sandwich on fresh-baked baguette) in the San Gabriel Valley after Christmas.
As a consolation prize, my Taiwan-born foodie-dietitian has promised to write down HER recommendations in two of the categories, along with a list of her favorite food bloggers. (In the San Gabriel Valley, it seems that the best food bloggers are Asian-Americans in their 20s or 30s.)
I will be allowed to have restaurant tea, as long as it's hot. (Dr. Forman had given me permission last week to bring in passion fruit tea from Au 79. Had he realized that the tea was iced and included bits of fresh fruit, it would have been a no-no. Oops.) My dietitian recommends (and permits) the Tea Station's almond green tea (green tea with hot almond milk.) Friends: Get ready for a lot of field trips with me to Alhambra, Arcadia, San Gabriel and Temple City for tea.
The good news is that I am permitted home-cooked food, as long as my healthy friends can attest that the vegetables and fruits were well washed and that the food was not contaminated with coughs or sneezes.
I think I know someone who makes a killer sweet potato pie. I'll bet it will taste great with almond tea.
As a consolation prize, my Taiwan-born foodie-dietitian has promised to write down HER recommendations in two of the categories, along with a list of her favorite food bloggers. (In the San Gabriel Valley, it seems that the best food bloggers are Asian-Americans in their 20s or 30s.)
I will be allowed to have restaurant tea, as long as it's hot. (Dr. Forman had given me permission last week to bring in passion fruit tea from Au 79. Had he realized that the tea was iced and included bits of fresh fruit, it would have been a no-no. Oops.) My dietitian recommends (and permits) the Tea Station's almond green tea (green tea with hot almond milk.) Friends: Get ready for a lot of field trips with me to Alhambra, Arcadia, San Gabriel and Temple City for tea.
The good news is that I am permitted home-cooked food, as long as my healthy friends can attest that the vegetables and fruits were well washed and that the food was not contaminated with coughs or sneezes.
I think I know someone who makes a killer sweet potato pie. I'll bet it will taste great with almond tea.
Tuesday, November 27, 2007
Nap time WILL be enforced!
Hi! It's your faithful Cancer Correspondent checking in on behalf of certain local members of Team Susan who are a tiny bit concerned that once Smooky gets home she'll:
a) take up skydiving since she doesn't have to worry about messing up her hair,
b) start training for the L.A. Marathon, or
c) offer to double-check the holiday lights on Christmas Tree Lane by climbing up each tree like a monkey.
Let's make it easy for Susan to take it easy during the holiday season. When you have a moment, email Janet Aird to update your availability to hang with our favorite multi-tasking lymphomaniac for an hour or two.
She may need a ride to CoH or help running errands. (Note: if she wants to re-roof the house "just for fun," you have permission to tie her to a chair and call for reinforcements)
a) take up skydiving since she doesn't have to worry about messing up her hair,
b) start training for the L.A. Marathon, or
c) offer to double-check the holiday lights on Christmas Tree Lane by climbing up each tree like a monkey.
Let's make it easy for Susan to take it easy during the holiday season. When you have a moment, email Janet Aird to update your availability to hang with our favorite multi-tasking lymphomaniac for an hour or two.
She may need a ride to CoH or help running errands. (Note: if she wants to re-roof the house "just for fun," you have permission to tie her to a chair and call for reinforcements)
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