Saturday, April 28, 2007

I'll have a side of fatigue with that chemo.

After my doctors at City of Hope first recommended the Hyper CVAD protocol, they immediately cautioned, "You'll need to quit your job." I was led to believe that the side effects of this dose-intense chemo would be so debilitating that the most I could expect to do was watch "I Love Lucy" reruns while eating rice gruel.

Imagine my delight when I sailed through Round 1 (Course A) with few side effects. Best of all, I had the ability to lead a full life during my two-week home pass. I drove myself to doctor's appointments, shopped, ran errands, made dinners, met friends for lunch and brunch, did laundry and kept the house picked up, went to several dinner parties and a Dodger game, attended a Japanese cooking class, did Pilates classes on Tuesdays and Thursdays and yoga on Saturday, walked regularly, gardened, completed some work for my former employer, attended two writers meetings, helped out at a Hillside's event, paid bills, did a lot of reading and writing and, occasionally, took a nap. I know this sounds like a lot, but I felt like I was doing a good job of pacing, not pushing, myself.

I didn't fare as well after Round 2 (Course B). I checked out of Hotel Hope on Sunday and had difficulty pulling myself out of bed on Monday to take Cindy to school and make it to the CofH by 8:45 for my blood draw and shot of Neulasta (to increase white blood cell counts). (George usually takes Cindy to school now, but since her school is on the way to CoH, I took over that morning.) By the time I got home, it was nearly noon, and I gave myself the rest of the day off.

On Tuesday morning, I felt a little better, but was disappointed that I couldn't rally to attend my 9 am Pilates class at the Pasadena YWCA. That evening, I managed to make dinner and took Cindy to her confirmation class. I noticed that I felt winded while puttering around the kitchen and that my heart rate shot up after I walked up a flight of stairs.

I feared that I wouldn't be able to pull myself out of bed again on Wednesday and rescheduled breakfast with a friend. I managed to take Betty to her grooming appointment, picked up the house and did laundry, but it took a toll. After I walked from the basement laundry room to the second floor, my pulse jumped from 60 to 120. I took a quick nap before my friend Ellen arrived that afternoon from Colorado.

I was so happy to see her that I felt my energy surge. We walked two and a half blocks downhill to our swim club. But I was a "big bad wolf," huffing and puffing for the entire two-flight stair climb and 2.5 block uphill return trip home. Again, I needed a nap to recover.

But, once again, I bounced back and we had dinner out.

By Thursday morning, I felt that I had completely recovered. I picked up Ellen at her hotel in Old Pasadena so that we both could attend the 9 am Pilates class. The teacher was out ill, but we took a short walk and then did our own workouts. I stretched while Ellen did an energetic NIA dance routine. When KC and the Sunshine Band started blaring, I jumped up and improvised a high-energy, 7-minute dance routine. After all, who can resist "Shake, Shake, Shake" and "Get Down Tonight"?

I dropped Ellen off at her hotel, came home to shower, and then picked her up for lunch out and appointments at the CoH. When I missed the exit and then got lost on the way to lunch, I blamed "chemo brain," but I knew full well that I was like this before a single drop of chemo surged through my veins.

I was still feeling full of energy when we arrived for my 1 pm blood draw at the CofH. As I mentioned yesterday, I fully expected to learn that my blood counts (red blood cell, white blood cell, hemoglobin, platelets, etc.) had soared through the roof.

I was shocked to find out that all my counts were in the toilet, and Dr. Forman was even more shocked to learn of my activity level.

Now it's time for a chemo side effects refresher. The chemo is designed to attack those nasty, fast-growing, blastic-variety Mantle Cell Lymphoma cancer cells. It is doing an excellent job at this, but, at the same time, is indiscriminately attacking other fast-growing cells. The attack started with the hair follicles and then moved on to the skin cells (my skin is full of unhealed sores) and every component of the blood cells.

When my white cell count drops, I'm especially vulnerable to infections. A drop in red blood cells causes anemia and assoicated fatigue and irritability. The drop in hemoglobin (a component of red blood cells) explains the shortness of breath and elevated heart rate. (I had to review how the hemoglobin - the oxygen and CO2 carriers of the blood - tie in with the heart and lungs of the circulatory system.) A fall in platelet count is worrisome because these yellow components are responsible for blood clotting.

My white cell count should recover soon because of the Neulasta shot on Monday, but my low hemoglobin and platelet counts called for that Thursday afternoon blood transfusion.

Again, I don't understand why I felt so good on Thursday in spite of the low counts. I compare it to my "fearless" attitude when it comes to people and places. I'm missing that piece of DNA that makes others naturally suspicious. Over time, my brain, not my gut, has learned to pick up on danger signals, but it doesn't come naturally and sometimes may miss a beat. For example, many of the female tenants in our Old Pasadena office building felt threatened because a homeless man had taken up residence in the fenced dumpster area of our parking lot. Some reported him to the landlord, but I felt he was harmless and covertly left blankets by the dumpster.

If my gut and my body don't naturally tell me to SLOW DOWN, I'll have to rely on other signals, such as lab results, pulse rates and help from family and friends.

Last week I reread a 2003 Time story about West Virginia war "hero" Jessica Lynch. I particularly liked this quote: "When it's all over," says her father Greg Lynch, "she'll just be an old country girl"—the label a shorthand for the virtues that matter, like kindness and toughness.

I feel the same way about this chemo process. When it's all over, I'll still be a kind and tough country girl, but I just have to make sure that the same tough quality that will get me through doesn't kill me in the process.


SAMO Calling said...

Do you have appropriate coverings (i.e. masks, gloves, etc) for your visitors at home? I'm concerned that you keep noogies away while you're at home.

4vrAmber said...

i haven't had a chance to check in until now...i just got caught up on all your posts. I want you to know that I think of you often and you are always in my prayers.
Also, since I live at Macys I am determined to find you the perfect hat!
P.S. bald is beautiful, just ask my little Lolita.

xoxo, amber

4vrAmber said...

i haven't had a chance to check in until now...i just got caught up on all your posts. I want you to know that I think of you often and you are always in my prayers.
Also, since I live at Macys I am determined to find you the perfect hat!
P.S. bald is beautiful, just ask my little Lolita.

xoxo, amber

Piper Robert said...

As I said in an earlier comment, you have strong qualities. But don't let the infamous "Highland charge" or "Banzai attack" be your last. Strength and hard work are great virtues. So is your intelligence. Please rest, even when you THINK you don't need it. Listen to big brother. If you don't, I'll tell everyone about the time Grandma gave you a spanking. If you're good, I'll take you to Sushi Gen. Love ya!

Proverbs 3:5,6

Piper Robert said...

I repeat, rest when you don't THINK you need it. REST.

Repeat after me.

Rest is good.

Naps are good.

Having George do it all is good.

Smiling is good.

Lisa Cooper Keil said...

Slow down, you're moving to fast, gotta make the energy last now, take time time to pamper you, while the chemo does what it's supposed to do.

In other words, skip doing dishes and take a nap!

Love and Hugs, Lisa

Karen said...

I second those cautions! Passion exists both in the sudden burst of energy, and the slow, steady, ineradicable burn (think of love). It sounds like now's the time for slow and steady.

I know it's hard to hear the words "slow down". I've been saying them to Don all week, to no avail -- and he only has a bad cold (which he has graciously loaned to me).

When you feel exhausted after a couple of flights of stairs, remember to listen to your body.

Have you ever read anything by the Vietnamese Buddhist monk Thich Nhat Han? His books are all, in one way or another, inspiring meditations on the awesome beauty of small and humble things. I love his way of seeing things. It's peaceful and quiet, yet deeply passionate.

Quiet passion may be just the thing you need right now.

John Morcos said...

Susan, it was wonderful and peaceful to see you and Terry doing Yoga on Saturday (Terry has pictures).

Now, I am back in Kuwait... and I miss life at home dearly. I should be back on May 18th.

Let's make sure you save some of that energy for a nice walk on the beach... and maybe even dinner.

Thinking of you and family from the other side of the planet.

Susan Carrier said...

I'm taking all of your comments to heart!

SAMO Calling said...

I'm going to do the Revlon 5K in a couple of weeks. I'll be doing it with you in mind. It's not an MCL walk, but it's a good cause and my heart's in in for YOU.

Joyce K said...

I have been among the missing in responding to your blog postings. Among other things, I have been in Oregon and when I go there I seem to fall of the edge of the world. I am catching up on your progress now. One thing that becomes obvious is your strong and positive attitude. You Go Girl! But the other "theme" of your writing is the amazing number of friendships you have established. I think you should write about how you have achieved that talent. I am sure it comes naturally but there must be 10 Tips to share. You seem to make connections at every turn and manage to maintain a growing network - more numerious than a Cell Phone Company Support Gang. You certainly need more than the "Five Closest Friends" Phone Feature. Joyce K

Karen said...

samo calling - is that Rose? If you're doing the Revlon 5K I'll donate to the cause, in honor of Susan.

Mrs. Duck

Karen said...

Susan, how are you feeling today? Stronger I hope. If you're looking for something interesting to read, I have a suggestion (I'm home sick with a bad cold and asthma today and just picked it up): a book called "1491" , about life in the Americas (from Alaska to Tierra del Fuego) just before the white man arrived. It's for a mass audience -- both fascinating and easy to read. Turns out (suprise, surprise) our history books when we grew up grossly underestimated the length of time humans had inhabited the Americas, and the extent of their settlements, civilization and impact on the environment. The author attempts to give you an idea of what it felt like to live here long ago, at certain times and places, before people here knew anything about Europe, Asia or Africa.

Also, if you like detective/thrillers, a good one is "Hostile Witness" by William Lashner. Terrific characters and atmosphere -- it feels totally real and is quite well written.

SAMO Calling said...

Yes Mrs Duck, Samo calling is Rose.

I'm happily accepting pledges.
from anyone wanting to pledge "with Susan in mind".
Contact me at

Run/Walk is May 12th. Make Pledge payable to:
REVLON Run/Walk for Women

Suzy Keleher said...

Kind and strong...yes, Susan, you are definately that way...and then some! generous, intelligent, well read, well travelled,experienced yet fresh and face value, adventurous, creative, spiritual,fun, finds the fun, loves to laugh, listener, caring, loving wife and mother, positive, peace loving, pathmaker, change agent, proactive, planner, organized- mostly, gourmet, lifestyle friendly, people friendly, culture friendly, sharp and friend, the friend of many...please take it easy, Susan. You are amazing and so much an inspiration, in any state of health! Like one of my favorite movies( As Good As it Gets) says: "You make me want to be a better man"- but in my case: Susan, you make me want to be a better woman! It is ok to take care of yourself! That, I say for the both of us...all of us! Love you! Suze

Suzy keleher said...

Susan, You are such an inspiration to any state of health! You make me want to be a better woman. Please take care of yourself! love You! Suze