Friday, November 30, 2007
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.
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
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 firstname.lastname@example.org.
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
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
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.
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
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)
Before I check out, I thought I'd take you through a day in the life at Hotel Hope.
Monday, November 27
7 am to 11am: Met with Dr. Forman, ate breakfast (tea and fresh orange), watched the Today Show, entered blood counts in spread sheet, posted blog, took meds and Benadryl, received platelets, took nap. I discovered that the oral form of Benadryl leaves me much less groggy than the drip. Received at least ten visits from nurses and PCA to check vitals, share blood count results, give meds, change IV bags, calm beeping IV pole, administer platelets, check toilet contents, etc.
11am to 11:45 am: Hematology patient exercise class. This was a blast. While we worked out, we shared laughs about the many indignities of being a patient.
11:45 am to noon: Pole danced.
Noon to 1 pm: Visited with Dave, my mantle cell lymphoma (MCL) mirror image. (We're both one-in-a-million MCLers with the disease manifesting itself around our eyes - his left, my right.) He's now two years post transplant and was at CoH for his six-month CT scan and blood test. He's a funny guy and had me in stitches with his "war stories."
1 pm to 2:00 pm: Ordered and ate lunch (patient-made tuna salad: tuna, boiled egg, relish, mustard, mayo on saltines). Watched the Food Network. Checked email and favorite blogs. Talked on phone. Received multiple visits from nurse and PCA.
2:00 pm to 2:30 pm: Napped.
2:30 pm to 3:05 pm: Got unleashed from my dance partner. Did a 1.5 mile walk. I found out last week that I'm allowed to enter the door that says "Authorized Personnel Only," making it easier to make a big lap around the entire floor. If I throw in a mini jaunt around the lobby, ten laps equals 1.5 miles.
3:05 to 3:30 pm: Showered, groomed, changed clothing.
3:30 to 3:45 pm: Received an in-room haircut. Got rehooked to dance partner.
3:45 pm to 5:00 pm: Watched end of Oprah and all of Ellen Show (I love Ellen) while catching up on email.
5:00 pm to 6:00 pm: Read NY Times online. Fixated on article about over 50's volunteering for the Peace Corps. Talked on phone.
6:00 pm to 7:00 pm: Ordered and ate dinner (hamburger patty with grilled tomato and onions, carton of milk).
7:00 pm to 8:00 pm: Tired. Watched mindless sitcom reruns. Didn't attempt to multi-task.
8:00 pm to 10:00 pm: Enjoyed Christmas Caroling by the City of Hope Singers. Surfed food blogs and worked on my list of "things to eat" when I return home. Caught up on email. Talked on phone. Revised IWOSC's evite for holiday party.
10:00 pm to 11:00 pm: Watched Seinfeld reruns while reading LA Times.
11:00 pm to 11:30 pm: Contemplated the many things for which I'm thankful; fell asleep.
Monday, November 26, 2007
My white counts more than doubled since yesterday to an astounding 2.8, and my red blood cells are still maintaining their levels. As I predicted, my platelets fell to 15, so I'll need another transfusion today. Dr. Forman said that platelets are always the last to rise.
The great news is that I may be able to go home THIS WEEK. The stubborn platelets are not an issue because Dr. Forman said that I can easily come in to CoH for transfusions. This is the best, most unexpected news ever!
Sunday, November 25, 2007
That's right - I'm finally responding to Neupogen, the WBC booster I've received for six days in a row. I was discouraged on Thanksgiving morning when I discovered that my count had plummeted to .3. Then I remembered that WBCs are a lot like a bad drunk - they have to hit bottom before they can pull themselves up. After falling to their nadir, my WBCs have now risen to an impressive 1.3.
My red cells and hemoglobin are also holding their own. I received a transfusion on Thanksgiving Day, and instead of a one day boost followed by a fall, the reds have continued to slowly multiply.
The platelets are a different story. I had a transfusion on Friday, but it looks like I'll need another one tomorrow.
What is it with me and little plates? You may recall that my platelets had the most difficulty recovering after previous chemo sessions, taking four to five weeks instead of the requisite two.
At least while my platelets are recovering, the yellow mask will allow my world to expand slightly. I'll be able to participate in the hematology patient exercise class and will be allowed to attend the repeat performance at the Comedy Center on Wednesday.
(Numbers in parentheses are normal ranges.)
WBC 1.3 (4.0-11)
RBC 3.06 (3.8-5.2)
HGB 10.2 (11.5-15.5)
PLT 23 (150-350)
CALL FOR ASSISTANCE: Does anyone know if it's possible to attach a spreadsheet to a blog post?
Saturday, November 24, 2007
A week ago, my scalp became tender to the touch. I knew what this meant: I was about to go bald again.
Sure enough, my hair has been shedding like a cheap rug. Clumps of hair swirl down the shower drain. Tufts of hair cover my pillow case. Strands of hair sweep across the floor. Every day, a nurse encourages me to go ahead and take it all off, but I'm hanging on until Monday for the clipping ceremony.
I'm thinking of forming a "bald again" club (although it sounds like a cult) for those who have gone bald twice in the same year. I think our numbers are relatively small because it's unusual to have enough time between treatments for the hair to grow back.
But I'll have to be careful about setting up the criteria for membership. What if Britney says, "Oops, I did it again" and takes the clippers to her scalp one more time.
Friday, November 23, 2007
Yesterday I realized that, in the past, my answer to this question depended on the succulence of the turkey breast, the tastiness of the stuffing (my favorite part of the meal) or the flakiness of the pie crust. A well-executed vegetable dish, such as roasted Brussels sprouts, could elevate the meal and the memories to mythic proportions.
Based on these criteria, I would have declared yesterday an unprecedented disaster, the worst Thanksgiving since 1621. The turkey slice was pressed, the vegetables frozen, the potatoes instant and the pumpkin pie crust flakeless. Even if I had an appetite, this meal would have been inedible. After two forced bites of each food, I discovered that my hair was shedding on the plate. That was the only excuse I needed to stop.
Thanksgiving dinner at the City of Hope
(If you click to enlarge and look closely, you can see my shedding hair.)
Thank God, I now have a new set of criteria for answering the question, "How was your Thanksgiving?" By my new standards (including depth and breadth of thanks), I declare Thanksgiving 2007 one of the best ever.
But before I came to this declaration, a few challenges nearly derailed me. First, of course, was my loss of Internet access. Then Cindy called pleading with me to budge on a non-negotiable boundary. I held my ground, but gee whiskers, it was exhausting. And then I woke up on Thanksgiving morning expecting my blood counts to be on the upswing. Instead, my white blood cells had plummeted to .3 and my reds were crying out for a transfusion.
My first thought was, "Why is this happening? Isn't it enough to be recovering from killer chemo?" And then I realized that I had become a little smug about my "attitude of gratitude." Could I still be grateful when the edges appeared to be unraveling?
When I started thinking about everything I have to be thankful for, the answer was yes. Family. An abundance of good friends. The many angels at the City of Hope. The kindness of strangers. Health. (I could keep going and going.)
You may be surprised to see "health" on the thanks list of a cancer patient. The truth is that, except for this mantle cell lymphoma thing, I'm in excellent health. A recent night of eight hours of chemo-prompted throwing up and blood pressure levels near comatose make me really appreciate that good health.
That health was good enough yesterday to enjoy a long visit with George and Cindy and shorter visits with three other friends. I also talked with more than a dozen family members and friends during the day. All of the stimulation called for a 6 pm nap, the first non-Benadryl-induced slumber I've enjoyed since arriving at Hotel Hope.
The magnificent view from my room at City of Hope.
Cindy brought me the beautiful leaves as a Thanksgiving present.
The Carriers are now a two-Mac family. I'm the proud owner of a spankin' new MacBook, and Cindy is the beaming owner of a slightly used iBook. We're both thrilled.
After my unfortunate incident on Wednesday, I was devastated. I focused on trying to figure out the fastest and easiest way to pull off the minor repair to my iBook. At the same time, I explored wireless service options so that I could at least use the laptop in the lobby. I found out that Verizon, my cell phone provider, wants $69.95 a month AND a one-year contract for the privilege. No, thank you.
And then the obvious hit me. Two hours before the accident, Cindy had requested her own laptop for Christmas. I acknowledged that she needed one, confessed that I was longing for the new MacBook and asked how she felt about inheriting my iBook. She agreed that it sounded like a great plan. The "great fall" just moved up our time line a few weeks.
George braved the Pasadena Apple Store on "Black Friday," the second busiest shopping day of the year. (Busiest is the Saturday before Christmas.) Apple NEVER has sales, so I was stunned to find out that my MacBook was $100 cheaper, today only. After a few phone exchanges between me and salesman Troy, George sealed the deal
He delivered my new MacBook, adding "The important thing is that we get you online again ASAP." In that spirit, I wasted no time in tearing the Mac out of its box and booting it up.
I was thrilled to find out that I had an option of automatically transferring files from Mac to Mac. That is, I could if I happened to have a FireWire cable. George headed for the closest Target and returned in less than an hour with the appropriate cable. 30 minutes later, the file transfers were complete and my new Mac was ready to go online.
George was my hero today.
Wednesday, November 21, 2007
She was using her computer while a nurse was, er, examining a boo-boo in her tush region. The phone rang and, since she was expecting a call from an old pal, she lunged for the receiver. This experience showed her that:
a) Mac laptops do not bounce when they crash to the floor, and
b) if even a microscopic tidbit of the Ethernet socket gets damaged, you can't get Internet access.
The computer works fine, but getting online is a no-go, at least for now. Her Mac can work with a wireless connection, so she plans to hoof it downstairs and figure out how to log in to the rumored WiFi signal in the lobby. But not tonight.
So it may take her a day or more to check her email and blog again. Do not be alarmed! She sounds chipper, and is really concentrating on EATING—whether she feels like it or not.
Keep the comments coming. Happy Thanksgiving to everyone on Team Susan!
Right now, I'm force feeding myself Cheerios, milk and banana. Eating is still a long, laborious and unpleasant process, often followed by a second coming.
I'll keep this post brief because my physical therapist (PT) is returning in 15 minutes to bring me to the gym. My white counts are still too low to do the hematology exercise class or go to the comedy night, but I'm permitted to hit the treadmill.
I'm gonna' try to eat five more bites of my Cheerios before my PT returns. Let's hope the little O's stay down!
PS My PT just checked in with me, and we decided to wait until 10 am for the workout. I need to be back in the room by 10:30 am for a blood draw.
This morning's blood numbers:
(Numbers in parentheses represent normal ranges.)
WBC .6 (4.0-11)
RBC 2.79 (3.8-5.2)
HGB 9.4 (11.5-15.5)
PLT 43 (150-350)
Tuesday, November 20, 2007
This photo reminds me that I haven't changed that much either. With life being one big hair cycle, I once again have the same 'do a quarter of a century later. (Believe me, neither the bad 70's perm nor my current '07 Kewpie doll curls were intentional.)
I may look "heavy" in the above photo, but it's misleading because I'm standing next to a buff Kate Moss. I was actually just three pounds heavier than my current chemo-chic body.
Monday, November 19, 2007
Yes, I'm A-OK, but I did start developing a slight fever (100 to 101) yesterday, which has thrown me into a busy day of the patient's life today.
My morning started with pre-meds that included Benadryl, a drug that is guaranteed to knock me cold for two hours and keep me groggy for an additional two. But I multi-tasked while napping, taking in lots of antibiotics and more red blood cells.
And then it was time for a chest X-ray and more lab tests. Late in the afternoon, I finally got unleashed from my pole so that I could take my shower, do my private dance of freedom and then get in some walking on the floor.
This floor walking just isn't cutting it as a form of exercise, so I met today with my Physical Therapist (PT). It turns out that there's a daily 11 am exercise class for hematology patients. We'll also be working on developing a separate strength training program and treadmill workouts. Of course, all of this is dependent on my daily blood counts. As the PT warned, "Your strength and energy levels will outpace your blood levels."
I'm also hoping that my white counts rise by Wednesday evening so that I can attend a comedy performance at the Hope Village Comedy Center. I think the real comedy will ensue when all of these patients with poles start vying for seats. I'll post more details tomorrow, in case any of you want to join me.
Good night, friends!
Saturday, November 17, 2007
Why do I bring this up? I'm thinking of getting a T-shirt that reads, "No shoes, no sushi, so surfing," to sum up my life for the next few months. (Well, technically, it should read "no shoelessness," but that would ruin the poetry.)
I'm developing a better understanding of this auto stem cell transplant (ASCT) process. (And, yes, even though I've received the reinfusion of my stem cells, the "process" is just beginning.) As you may recall from a former post, the ASCT is performed as a "rescue procedure" to recover from the massive doses of chemo. I thought it was a linear procedure: slam down blood with chemo, build up blood with reinfused stem cells.
In reality, the chemo is continuing to slam down the blood, even as I type this. And the stem cells are getting ready to learn to produce their own blood components at the same time. In the meantime, I have daily blood draws and receive transfusions when my counts fall below doctor-specified limits. I received my first red blood transfusion this morning.
For the next couple weeks, these daily blood count reports will provide my daily drama, so I'm going to start posting them on the blog as well. (Numbers in parentheses are normal ranges.)
WBC .4 (4.0-11)
RBC 2.3 (3.8-5.2)
HGB 8.7 (11.5-15.5)
PLT 24 (150-350)
Yesterday I experienced a few hours of the proverbial, mowed-over-by-a-fleet-of-Mac-trucks exhaustion, but today I've felt wonderfully "normal" all day.
Now I'm feeling run-of-the-mill, haven't-slept-more-than-three-hours-a-night-for-a-week tired. And guess what? That's a glorious feeling. I'm looking forward to lots of peaceful ZZZs tonight.
Friday, November 16, 2007
Here's the latest:
She received her second infusion of stem cells today, apparently STRAIGHT FROM THE FRIDGE. For some unknown reason, CoH does not have a stem cell warmer. So..imagine getting a grape Slurpee injected into your veins. Brrrr.
Heck, you'd think the Crock Pot people would come out with a model for medical use!
The blankets didn't help much, so during her infusion Susan ended up shivering like the poor little match girl in those Victorian novels. Can one drink a hot toddy during a stem cell infusion? Must Goggle for answers, stat!
Susan got a laugh from this: I read story in People magazine today about a morning show anchor who has breast cancer. She has a good attitude, but sometimes she feels sorry for herself. When this happens, her family calls her Chemo Sobby.
That is all for now.
Keep those comments coming. Smooky would prefer to skip the morphine, but she is ADDICTED to comments.
Thursday, November 15, 2007
But my my dream life is another story. After a round of morphine (my first and, I hope, my last), I swirled in and out of psychedelic dreams. Last night, without the aid of pain meds, I had wild adventures involving myself in boy-type underwear and nothing else with a group of pre-prepubescent Japanese-American boys in Little Tokyo. We ingeniously fashioned clothing from burlap, mud and tar. We rolled in mud and slid down bacteria-ridden water slides, all forbidden activities for patients with repressed immune systems. The finale was jumping off a roof. (All dangerous and mischievous activities, but none sexual in nature.)
Today I was convinced my dream was real. I escaped from the hosptial and looked down and saw that my leg was injured and sought help at the Pasadena Macy's. I was stylishly dressed, but had no hose on my legs or shoes on my feet. I've never been so happy to wake up and realize I was in my hospital bed watching an episode of Martha.
Martha's pumpkin center piece never looked so good.
Yesterday afternoon was better for me, but an intermittent computer server and an intermittent stomach kept me from the blog keys. If any of you have sent me emails, I'm slow right now in returning them, so bare with me.
Tuesday, November 13, 2007
Tomorrow is another "day off" to recover before we start reinrfusing my stem cells on Thursday and Friday.
Monday, November 12, 2007
But I'm almost done. I can do this. Thank you again for all of your support.
Didn't sleep a wink last night. It's 8:40 am, so maybe I'll catch a wink now. Hard to type.
Sunday, November 11, 2007
I'm finished with the three-day course of Carmustine and will move on today to Etoposide before a much-needed day off tomorrow. I'm 3/5 of the way done!
Friday, November 9, 2007
Great! I have the dreaded yellow warning banner outside my room. Today I had low blood pressure - a common side effect of the chemo. Combine that with the pre-meds-induced drowsiness and we have a whole lot of woozy wobblin' goin' on.
And, tomorrow, during my Benadryl and Atavan-induced slumber, a staff member will be sitting with me in my room for at least four hours, just to make sure I don't try to do anything wild and crazy (like go to the bathroom).
I couldn't stand the sight of that overgrown sapling and instructed the gardeners to yank her out. "No, Mrs. Susan," they pleaded with me. "It is not dead yet. Just give it time and you will see new growth because the tree can now see the light." I responded, "Grumble, grumble."
Two weeks went by, and I still saw no signs of growth. I asked them once more to remove the sickly sapling, but, again, they refused.
A week later, I started to notice new shoots of limbs and leaves. A month later, the tree was green all over, and it continues to grow.
I can't help but make comparisons with my own scalp. Within months, I went from bald to budding to bountiful swirls of curls. It's the circle of hair life. I call it my "kewpie doll" look, but one of my friends says I have a "faux hawk," kind of like a mohawk wanna' be.
I'll soon lose my hair once again, thanks to the massive doses of chemo prior to the "rescue procedure." I'll go from bountiful to bald to budding and back to bountiful because, as everyone knows, everything grows.
Thursday, November 8, 2007
Wednesday 11/07/07 (Dilantin*) Check in for hydration
Thursday 11/08/07 (Dilantin, Benadryl, Atavan, Zofron)* Carmustine
Firday 11/09/07 (Dilantin, Benadryl, Atavan, Zofron)* Carmustine
Saturday 11/10/07 (Dilantin, Benadryl, Atavan, Zofron)* Carmustine
Sunday 11/11/07 (Benadryl Atavan, Zofron)* Etoposide
Monday 11/12/07 DAY OFF
Tuesday 11/13/07 (Benadryl, Atavan, Zofron)* Cyclophosphamide
Wednesday 11/14/07 DAY OFF
Thursday 11/15/07 (Pre-meds) Reinfusion of Neupogen-primed peripheral stem cells
Friday 11/16/07 (Pre-meds) Reinfusion of Neupogen-primed periipheral stem cells
Tuesday 11/20/07 Begin Neupogn injections for white cell count.
Day Zero refers to the day I receive my stem cells on 11/15/07. Days prior to the reinfusion are counted with negative numbrs. (e.g. Thursday, 11/08/07, is Day -1; Friday, 11/09/-7, is Day -2, etc.) After the reinfusion, we start counting with positive numbers. stem cells is returned is Day 1 and we continue numbering the days after that. (e.g. Friday, 11/16/07, is Day 1; Saturday, 11/17/07, is day 2, etc.)
I hope that this post doesn't put you to sleep faster than the Benadryl coursing through my veins before the chemo. It's not even 10 pm, but I can't keep my eyes open any longer.
I have a fabulous, Central-Park-style view from my window; my favorite patient care assistants (PCAs) and nurses have been taking good care of me and I'm learning how to survive on "spa" food. (For breakfast, you can't go wrong with a bowl of Cheerios, milk and banana, the only fresh fruit I'm allowed.) So far, so great.
Wednesday, November 7, 2007
Please call the main number for the City of Hope, 626-256-4673, touch "0" for the operator and then ask for me by name or Room 5111.
I'll have my cell phone with me to make outgoing long distance calls and will check for messages, but I don't plan to use the cell for incoming calls.
Yes, I can have visitors. Click here for the City of Hope guidelines. You'll find me in Room 5111 in the Helford Hospital (aka the "new" hospital).
If you can't reach me before a visit, you may want to call the main number for the City of Hope, 626-256-4673, touch "0" for the operator and then ask for the RN or PCA on duty for Susan Carrier. She'll be able to tell you if I'm awake or if I've already had a barrage of visitors.
Be prepared to wash up and wear a CoH-provided mask and gloves. And if you think that you may be coming down with a cold or have been recently exposed, then it's best to save your visit until the germs have settled down.
Sending Mail to Susan:
You may send mail to: City of Hope, Helford Hosptial, Room 5111, 1500 East Duarte Road, Duarte, California 91010 ATTN: Susan Carrier OR at my home address at 1338 Hull Lane, Altadena, CA 91001.
Preparing Food for George and Cindy:
Food for the fam. will be greatly appreciated. If you'd like to drop off food, please call George at work at 213-253-7333 on weekdays or at 626-797-1897 on weekday nights and weekends to make arrangements.
Preparing Food for Susan:
I'm now on a special low-bacteria diet, so food from the outside world is forbidden. Believe me, I'd kill right about now for anything that doesn't come served on a tray. (Yep, I'm officially sick of "spa" food already, and I've been here less than four hours.) And the second that I get the word that I'm allowed smuggled-in food, I'll pay top dollar to anyone who brings in a kilo of chocolate-orange gelato from Bulgarini in Altadena.
Currently, I have to approve a comment before it's posted. Since hours may now slip by between email checks, I've decided to abandon the approval process. Your posts will automatically appear, immediately after you've verified the random mix of letters that appear on your screen.
Some of you have subscribed to the notification service for new blog postings. A few have hit "reply" with your comments. These messages will come to me, but will not appear on the blog. If you'd like your comment to appear (and I love the comments on the blog so that I have a permanent record of your lovely thoughts), please click on the blog site and then add the comment.
That's all, folks!
I propose that each of us commit to 30 days of really boring activities. The kind of pursuits Susan would be happy to skip. It's the least we can do to show our support.
Here's what I plan to do during her stay at CoH:
1. Alphabetize my spices.
2. Organize my sock drawer.
3. Clean the grout in bathroom with an old toothbrush.
4. Memorize all the state capitals.
5. Color my gray roots.
In your comments, please share the really tedious and/or boring activities you have planned for Smooky's hospital stay.
Remember, keep any really exciting news to yourself. We just don't want to know.
Tuesday, November 6, 2007
"Everybody with Mantle Cell Lymphoma relapses": Actually, the Mayo doctor who spoke these words quickly corrected himself, "The vast majority of Mantle Cell Lymphoma patients relapse." Another doctor from the University of Minnesota Cancer Center repeated the sentiment a little differently. ("These diseases will come back at some point.") I had read this and had come to the same conclusion after spending hours poring over an Excel spreadsheet of more than 350 mantle cell lymphoma patients and their treatments. But it was the first time that I heard them spoken out loud by a doctor.
When I was first diagnosed, I thought I would do all the research, make the right decisions, get the best treatment, maintain a positive attitude and then this adventure would have a well-defined beginning and ending. Now I understand and am beginning to accept that this is a lifetime challenge.
There's power in prayer: Did you know that the Mayo Clinic has a department of Complementary and Alternative Medicine (CAM)? I always thought of CAM as herbs and mushrooms and special diets, but it's far broader than that narrow perception. Prayer, by both the patient and from others, is considered the most prevalent and powerful CAM. Yoga, meditation, music and massage also pack a powerful wallop in boosting the immune system.
Forbidden Foods: The transplant specialist warned us about certain forbidden foods, such as mushrooms and blue cheese, which are fungi and mold. When I raised my hand to ask about raw fish, I received a blank stare until I elaborated "sushi." "Oh, I don't eat that, so I forget about warning my patients, but I don't think very many of them eat that either," she responded. It's definitely a no-no post transplant, so I've been porking (or is it "whaling") out on the stuff.
There is always hope: A licensed clinical social worker from the Dana-Farber Cancer Institute in Boston shared this with us: "If you've lost hope, ask someone to hold it for you until you're strong enough to get it back." If I ever lose hope, please offer to "hold" it for me.
PS I'll get around to posting about the Stones party after I check in tomorrow evening.
That is until I saw "the slide" - the one with a giant sledge hammer that represented the effect of massive doses of high-potency chemo that precede the SCT. Geesh, could the doctor, a transplant specialist from the University of Minnesota Medical Center, have been any more subtle? I thought to myself that she should have used a slide of a giant anvil falling on an unsuspecting road runner. That would have gotten her point across.
But, of course, she went on to talk about the recovery - about how the stem cell transplant works as a "rescue procedure." (I like this terminology.) And how the patient will be supported with blood transfusions until the stem cells start producing their own red blood cells, white blood cells and platelets. That process generally takes about two weeks.
Now that I think about it, that slide of the road runner and the anvil doesn't sound like such a bad idea. After all, the road runner always emerges with a cheerful "Beep, beep," feistier and stronger than ever.
Monday, November 5, 2007
Please consider participating in this life-saving, student-run project. (See below for ways in which you can take part. )
And please share this information with as many people as you can.
My name is Jake Sachse and I'm a junior at Crossroads School. I would like to share with you my father's miraculous victory over his five-year battle with cancer. In 2002, when I was in sixth grade, my father, Ed Sachse, was diagnosed with Non-Hodgkins Lymphoma. He struggled through many treatments and two intense stem cell transplants. Now I am grateful that he is CANCER FREE, thanks to modern cancer research and especially to his personal angel.
What is an angel? The dictionary states that an angel is a messenger of God. In my dad's case this certainly proved to be true. An anonymous donor, an exact genetic match, gave her stem cells and in so doing became AN ANGEL and SAVED my father's life.
In an effort to give back, I have decided to launch an event with many high school students to register potential stem cell donors in the National Marrow Donor Program (NMDP). With a simple cheek swab, that literally takes only a few minutes, you can join the millions of donors who stand ready to give someone a future. This test in no way obligates you to be a stem cell donor; it only allows the National Registry to keep you on file for the possibility to “BE AN ANGEL + SAVE A LIFE”.
I have asked two incredible organizations to help make this event a huge success: “Phase One Foundation”, a charity whose mandate is to fund clinical trials and underwrite leading scientists who specialize in cancer research; and the “City of Hope”, a world renown leader in cancer research and treatments, a designated NMDP center.
My goals for the event are as follows:
1. Register and cheek swab --at no charge-- at least 500 people, aged 18-60, to put on the National Marrow Donor Program
2. To raise awareness and educate our community of the need for donors and give everyone a chance to make a difference;
3. To raise at least $25,000 by involving 25 companies in donating $1,000 and attaching their name to this wonderful cause to underwrite the costs of genetic testing.
4. To raise funds to support our “Sponsor an Angel Program” to offset the $50 genetic testing cost per “Angel”.
The event will be held on:
November 17, 2007
9:00 am – 3:00 pm
at Crossroads School in Santa Monica
(at the northwest corner of Olympic Boulevard and 18th Street.)
To make a donation or for more information, please go to www.BeAnAngelSaveALife.org <http://www.beanangelsavealife.org/> or make check payable to Phase One Foundation, Attn: Be An Angel, 256 26th Street, Suite 201, Santa Monica, CA 90402. All donations are 100% tax deductible.
To RSVP to the "Be an Angel" campaign, send an email to *email@example.com*
Please join us and *BE AN ANGEL + SAVE A LIFE*…and give the Gift of Hope!
BE AN ANGEL+SAVE A LIFE a 100% Student Run Organization invites you to join us November 17th and attend our First Stem Cell - Bone Marrow Drive. Your efforts to spread the word and join the registry will help reach our goal to register 500 people on the National Marrow Donor Program. To Make a Donation or for Information please go to www.BeAnAngelSaveALife.org or contact me at firstname.lastname@example.org.
Friday, November 2, 2007
Ever since I found out about my imminent stem cell transplant, I’ve been ready to put up my dukes at the slightest provocation. Why the edge? I figured that, after I return home from Chicago, I’ll have just 15-waking-non-doctor-appointment hours to tackle my “Things to do before my transplant” list. And, I’ll admit, I’m a little grumpy that I’ve been rejected from the Zevalin trial.
This morning, while trying to get ready for my Minneapolis/Chicago trip, the phone rang nonstop from 8:30 am until I left the house at 9:15 am. Darn those annoying folks at the City of Hope calling to confirm appointments and prescription refills.
Once I got to the airport, the chip on my shoulder grew. As a rule, I’m extremely cordial to the good folks at TSA, particularly since my god-baby’s mom and her sister are former and current employees. But I almost lost it when an employee ripped my boarding pass from my hand after I walked through the human scanner. She was like a bully toddler yanking away my favorite stuffed bear.
“You’re supposed to show me your boarding pass,” she snarled while she bobbed her head like an out-of-control guest on the Jerry Springer show.
“There was no need for you to RUDELY grab it from my hand,” I snarled back, without bobbing my head.
“Well, that was RUDE OF YOU not to show me your boarding pass,” she hissed.
“Well, my rudeness was unintentional, but yours was INTENTIONAL,” I fumed, resisting the urge to add, "And your mama wears army boots."
“Well, you were rude not to show me your boarding pass,” she repeated. (Wouldn’t it have been just as easy for her to have said, “Excuse me, ma’am. May I see your boarding pass?”)
We were going at it like a couple of extras from “Mean Girls.”
I could see that our tussle was going nowhere fast. My inner Buddha said, “Breathe and let go,” but my inner bitch said, “Don’t let this bully get away with that.”
My inner chicken finally won out after I began to visualize myself in a federal holding tank instead of visiting “cell mates” (our affectionate name for fellow mantle cell lymphoma patients) in Minneapolis or getting Satisfaction at the Mick Jagger party in Chicago.
I calmed down after I boarded the plane, but slowly began to steam when I realized that the over sized individual in front of me was managing to recline his seat 5 degrees more than anyone else in his row. (Yes, I pullled out my protractor and verified the degrees.) My long legs needed those extra 5 degrees, so I engaged him in a push-pull tug-of-war. It was a losing battle.
Then I became silently iRate when the young man next to me played his iPod at full blast, drowning out the OMs that my inner Buddha was trying to generate.
Lunch service was no better. For $2, we Northwest passengers had a choice of Pringles potato chips or another junk food. I opted for the $5 luxury box, filled with enough empty calories and fat to sustain a flight to the other side of the planet.
We eventually landed, and I looked forward to relaxing at the hotel. But after waiting more than 40 minutes for our Hilton airport shuttle, I called the hotel. Turns out they were having “a little trouble” and advised me and the two other guests, who had flown from Melbourne (literally the other side of the planet) to take a cab.
It’s now nearly 8:30 pm. I’m less than a mile from the Mall of America, the world’s largest mall. Cindy would consider it sacrilege to choose not to travel to Mecca. But for me, a little ranting and writing therapy beats retail therapy every time. That and a perfect Manhattan, straight up.
Thursday, November 1, 2007
The team also decided against doing the Zevalin trial of radioimmunotherapy because of my blood's history of being unable to bounce back. They want me and my blood counts as high as possible before the pre-SCT high-dose chemo knocks them down to near nada.
I definitely would have liked to have done the radioimmunotherapy because of documented improvements in survival and remission times, but this is the time when I just need to trust and surrender.
(Insert drum roll here.)
On Wednesday, November 7, I'll be checking in to Hotel Hope for my month-long stay.
At the moment, I'm feeling a little light headed from this unexpected good news. I'm leaving tomorrow for the Minneapolis/Chicago trip and will return on Monday night. I'll spend a good chunk of Tuesday at CoH, so that doesn't give me much time to prepare. I still have a thousand and one items on my "Things to Do Before My Transplant" list (watch for the soon-to-be-released book and movie), but I may have to pare that down to a dozen or so.
"Play dates" for walks, hikes, coffee or lunch that were penciled in my calendar will have to wait until 2008.
And, you guessed it. I'll be having my Thanksgiving dinner at Hotel Hope. I can't wait to find out what the chef has whipped up.