Some people can sleep any time and anywhere. I envy them.
Take the 20-something young woman I saw at The Coffee Gallery the other day. She plopped herself down on an overstuffed couch while she waited for her boyfriend. Since she had nothing to do, she stared up at the fans spinning lazily overhead. Soon, she was as mesmerized as a six-month-old. The next thing I knew, she was sleeping like a baby.
“Oh, to have such a simple life,” I thought as I pretended to write. And then I realized that I was entertained by watching someone watching spinning blades. And then I stared some more as she slept. And then I Twittered about it. And now I'm blogging about it. Does it get any simpler than that?
Apparently so. Today I watched a patient at the City of Hope fall asleep while he leaned against a wall. I hopped up, tapped him lightly on the shoulder and offered my seat. He refused and I insisted until I had offered and he had refused three times (that’s the secret number of times one must insist, in case you were wondering). I felt a little bad about waking him and slinked back to my seat.
Within seconds, he was asleep again. I spent the next ten minutes watching him sleep standing. At one point, his head jerked violently back, but, otherwise, he was as unmoving as a corpse. I thought only horses could do this.
I took a break from my sleep-watching to have my vital signs taken. When I returned, I was happy to see the man still slumbering . . . in my vacated seat.
Warning: The next few paragraphs may cause drowsiness and should not be read while operating heavy machinery. However, if you or someone you know is taking Rituxin, the information may have the opposite effect.
I recently read that Rituxin, the monoclonal anti-body that I take every quarter by I.V., can lower resistance to infections, especially pulmonary infections. A blood test can measure the number of infection-fighting immuno-globulins, and, if the numbers are low, patients can receive a special transfusion.
I asked my doctor about this today, and he agreed that it was a good idea to draw a little more blood so that we could look at the immuno-globulin numbers. He also said that oncologists continually debate the merits of maintenance Rituxin because a) it can lower resistance b) the efficacy is debatable and c) Rituxin can no longer be used in relapse cases after it's used for maintenance. I knew about the efficacy debate, but I didn't know about the other two issues.
If I wasn't insured, I would skip the Rituxin. I called billing recently because the cost for one dose of the drug was $18,000. I thought that had to be a mistake, but it wasn't.
My EOS are creeping back up again, so we've delayed any further tapering of the Prednisone. Something else I learned today: I'm my doctor's only patient with eosinophillic issues. Oh, how I love being the one and only.
Alright. You can wake up from that snooze now. I'm just sorry I wasn't there to watch you.
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March 2008 - Sometimes I feel like a wig.
Sometimes I don't.
Up a tree and feeling on top of the world
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What does a writer do when she finds out she has stage 4 Mantle Cell Lymphoma? She blogs. Because, as everyone knows, cancer sucks, but blogging rocks.
On January 26, 2007, I was diagnosed with Stage 4 Mantle Cell Lymphoma (blastic variety), a rare, aggressive and treatment-resistant form of non-Hodgkins Lymphoma.
My team at the City of Hope decided to bring out the big guns - six rounds of Hyper CVAD followed by an autologous stem cell transplant. I bounced back after each round of chemo, but my blood counts didn't.
After four rounds we called chemo quits and started collecting stem cells for the auto stem cell transplant. The harvesting took three tries, two drugs and eight weeks, but I finally eked out the minimum two million stem cells.
After megadoses of chemo, I received my stem cells on November 14 and 15, 2007. I bounced back almost immediately. Best of all, I achieved complete remission from the Mantle Cell Lymphoma.
In January 2008, I was hospitalized for 11 days for chemo-induced pneumonia. I bounced back.
In the summer of 2008, my eosinophils (a component of the white blood cells) rose to dangerous levels and infiltrated my lungs and GI tract. My weight dropped to 105 pounds, and I was incapacitated for nearly three months. Once again, I bounced back.
I continue to make monthly visits to the City of Hope for blood tests and check ups, quarterly visits for maintenance Rituxan and semi-annual visits for scans.
I'm still in remission and have more energy than ever. And about that perfect purse? I keep looking.
Here are a few other things keeping me busy:
My food blog, Open Mouth, Insert Fork
My consulting business, A New Leaf Communications
The Orange Cat, a site for family fun in the San Gabriel Valley
A3M - Asians for Miracle Marrow Matches
YWCA Pasadena-Foothill Valley
IWOSC - Independent Writers of Southern California
On January 26, 2007, I was diagnosed with Stage 4 Mantle Cell Lymphoma (blastic variety), a rare, aggressive and treatment-resistant form of non-Hodgkins Lymphoma.
My team at the City of Hope decided to bring out the big guns - six rounds of Hyper CVAD followed by an autologous stem cell transplant. I bounced back after each round of chemo, but my blood counts didn't.
After four rounds we called chemo quits and started collecting stem cells for the auto stem cell transplant. The harvesting took three tries, two drugs and eight weeks, but I finally eked out the minimum two million stem cells.
After megadoses of chemo, I received my stem cells on November 14 and 15, 2007. I bounced back almost immediately. Best of all, I achieved complete remission from the Mantle Cell Lymphoma.
In January 2008, I was hospitalized for 11 days for chemo-induced pneumonia. I bounced back.
In the summer of 2008, my eosinophils (a component of the white blood cells) rose to dangerous levels and infiltrated my lungs and GI tract. My weight dropped to 105 pounds, and I was incapacitated for nearly three months. Once again, I bounced back.
I continue to make monthly visits to the City of Hope for blood tests and check ups, quarterly visits for maintenance Rituxan and semi-annual visits for scans.
I'm still in remission and have more energy than ever. And about that perfect purse? I keep looking.
Here are a few other things keeping me busy:
My food blog, Open Mouth, Insert Fork
My consulting business, A New Leaf Communications
The Orange Cat, a site for family fun in the San Gabriel Valley
A3M - Asians for Miracle Marrow Matches
YWCA Pasadena-Foothill Valley
IWOSC - Independent Writers of Southern California
March 2008 - Sometimes I feel like a wig.
Sometimes I don't.
January 2009
Up a tree and feeling on top of the world
Cancer Banter
I can't die. I still have to find the perfect purse.
14 comments:
Enjoyed reading your sleepy post. Beyond the content, I am inspired by your positive outlook and happy spirit. Your immune system my be affected by the drugs, but you certainly are not depressing your immune cells with a negative, depressed outlook. I think you offer a wonderful model for others facing life-threatening illness. Thank you.
Susan:
As always, I enjoy anything you write. It tickled me to read about a man who was able to sleep standing up. I have trouble sleeping in my own bed let alone in public!!
Prayers that your EOS counts regain stability and that the steroid effects are minimal.
Cancer can be such a roller coaster ride. It's gratifying to know that even during the dips and sharp turns, you are able to remain dedicated to enjoying and appreciating every aspect of life...even something as simple as a stranger asleep in public.
Susan, I knew you were special the moment I met you, but I wish that you weren't so special to have these unusual EOS issues. Why are these problems still plaguing you? I wish the wonderful Dr. Forman would get to the bottom of it. What happened when you went for the outside opinion a few months back?
Well, I'll catch up with you Saturday. Looking forward to seeing you! n
Those pesky EOS. Always trying to rain on your parade. I'm glad you won't let them. Sweet dreams.
I have to brag. I am excellent at falling asleep anywhere. I can just sit in a chair and fall asleep. Riding the bus or subway home growing up in NY I could fall asleep and automatically wake up at my stop. The downside is that sometimes I get so sleepy driving, I start to feel like I'm going to fall asleep at the wheel. Then I have to stop for coffee if possible or shake myself awake. Sorry about your pesky eos. Your eos and my platelets! I know what you mean by being the only one. Sometimes they tell me that about various things and I always wish I wasn't "unique."
I dozed off poolside at the spa last week and awoke mid-snore. So embarrassing! ;-)
I know you love your doctor and all, but I find it a bit worrisome when you're telling HIM about your medical research findings and he agrees with you about further tests being necessary!
Shouldn't that be the other way around? On the other hand, you should write a book about do-it-yourself medical research, with all the wisdom you've gained.
Oh - I forgot to mention the guy at this morning's CG meeting who dozed off and on throughout until he finally pulled his cap down low over his face and went soundly asleep for the duration!
Barb and I got the giggles watching him. ;-)
I can usually only sleep at night. When I was being 'looked after' by my 85+-year-old mother in between chemo treatments a couple of years ago, she would always send me off to have an afternoon nap on my bed! But I only ever read or played on the computer ... :)
And as for sleeping on planes - well I really wish I could sleep on the long Australia to London flights but I have to be lying down flat to have any chance. And there's not often a spare row of seats!
And can you sleep on planes Susan? I can't - I'm talking long-distance - overnight flights.
Keep up your spirits (not that they seem to have any chance of drifting down!) Those eos (whatever they may be!) will get sorted sooner or later. And you may as well be happy and enjoy life while you wait I believe! (I do know this is sometimes easier said than done, but ... )
After I read $18,000, my mind went blank.
Susan,
First of all, I hope your immune system gets better soon!
Well, as to my sleeping story - usually a very light sleeper, once I stayed up very late when I was living in London, caught the subway (tube), and fell asleep. I fell asleep standing up while holding on to a subway strap, no lie! Luckily I woke up before my stop.
Lisa C.
Bonnie, Overall, I'm feeling pretty darn good and hope to stay that way.
Sue, "trouble sleeping in my own bed, let alone in public" LOL
Nancy, The specialist from Stanford wants me to taper off Prednisone and let them rise high enough again to do a bronchoscopy. I HATE that idea because I don't want to get that sick again. But, on the other hand, I know he won't subscribe the drug (another monoclonal antibody on clinical trial) that I want unless I go through the procedure he wants. Ugh!
Margaret, I just keep thinking of Eos, the goddess of the dawn.
Ronni, It's funny the things we have to brag about. I have my big veins and you have your sleeping ability. It really is a gift to be able to sleep anywhere.
And I used to think that being
"ordinary" was a curse. Now I feel like I could use a little more of that.
Karen, That's so funny about your waking up mid-snore. I once fell asleep mid-sentence. And funnier still about the CG snoozer.
I wish that doctors would just ROUTINELY check immuno-globulin levels of patients on maintenance Rituxan. It's a very cheap test.
Susie, I used to be able to sleep on flights, both long and short. I used to take frequent, early morning flights to SF for business. I would fall asleep the second I hit my seat, and the flight attendant would have to wake me up when we arrived. Now I can't do it. My theory is that the seats don't recline as much as they used to and the leg room is tighter.
Paula, I know; that 18 k blows my mind.
Lisa, That's an amazing story. In Japan, I often saw sleeping train commuters who trained themselves to wake up seconds before their stop. But I never witnessed it with a standing sleeper.
Gotta agree, $18k...then again, I don't see the bills for my treatment either, so I can only imagine what some of my meds, treatments and surgeries cost.
If I am tired enough, I can fall asleep almost anywhere. I was good at it in college, one hand on a cheekbone, the other with a pen in it. As long as I didn't drool or snore, I was fine.
I do have to agree about the testing---blood tests are usually not overly expensive. Figuring out what might save a life...humnn, priceless?
I'm tapering off my steroids too, but EOS is steady, at least at the moment.
Of course, now that I've read it, I'm sleepy and gonna have to take a nap.
Forget the $18K -- Sleep standing up? Doesn't compute. All my life I've had to sneak up on sleep.
Glad you're feeling pretty darned good.
Heck Susan, I'm one of those people who can fall asleep almost anywhere at anytime, except of course at bed time in my own bed.
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