Quick Summary

I spent most of the day at City of Hope and then came home for a one-hour snooze. Here's a brief summary:

• The CT scan shows infiltrates in the lungs.
• My eosinophil (EOS) counts are still high.
• I'll return to CoH tomorrow for a bronchoscopy and biopsy of tissue sample.
  
• I'll see Dr. Forman again on Monday and we'll figure out the treatment plan.
• All of the same symptoms are persisting.
  

You got it - that means that I have to lay low this weekend because I won't get any drugs until Monday at the earliest. I'm sick of being sick, but this is only temporary.

Gasping for Air

As I sit typing while watching Hoda and Kathie Lee on the Today Show, I think, "I feel pretty good. My body is slowly healing on its own."

But then I can no longer hold Betty at bay. She is barking and nudging me and crying out, "What's going on, Mom? Why haven't you fed me?" I take a few tentative steps. So far so good. I descend the stairs. No problem. I reach the kitchen and start gasping for air. I feed Betty and gather food for myself. I collapse in a chair.

I climb back up the stairs and, by the time I reach the top, I'm trying desperately to get enough oxygen into my lungs.

As bad as that may sound, I think I'm doing a little better than yesterday. And I'm definitely doing better than the weekend.

I won't need to exert myself for another two hours, when I'll start getting ready for my afternoon scans and x-rays at CoH.

Tomorrow I'll return at 10 am for pulmonary testing, appointment with pulmonologist, blood draw and, finally at 2 pm, another visit with Dr. Forman.

How much do I owe you?

If you're reading this post, no doubt you can see the little "Light the Night" widgets in the left column. I wonder how many of you have clicked on the widget. I wonder if any of you have thought, "I'd like to give a little something, but I don't know how much." I wonder how much the woman at Dosa paid for her orange Hermes bag.

If you've also wondered about how much to donate, I'd like to offer a few giving guidelines today.

I suggest that you consider your Cancer Banter experience. Have you ever been:

• Enlightened
• Entertained
• Informed
• Inspired
• Thankful

For each experience, consider donating $10 to Light the Night. For example, If you've thought, "I'm thankful I don't have cancer," and "That was really funny when Susan couldn't get her skirt off," that's 20 bucks for the LLS.

On the other hand, if reading Cancer Banter has been a real downer for you, consider subtracting $10 from that total for each time you have been:

• Disgusted
• Disappointed
• Filled with regret
  
• Angry

If you come up with a negative number, let me know.

A Tribute to Bob

Bob traveled around the world as a member of the Katherine Dunham dance troupe in the 1950's.

Below are a few videos of Ms. Dunham's troupe:

Floyd's Guitar Blues (silent) (We think Bob is the male dancer in this clip.)
http://www.youtube.com/watch?v=In1KtD8Wz9g

Charm Dance (silent)
http://www.youtube.com/watch?v=J1aMxkMo19E

Carnival of Rhythm
http://www.youtube.com/watch?v=FetuMAGOzBc

Stormy Weather
http://www.youtube.com/watch?v=W23MYjH92co

Cumbia
http://www.youtube.com/watch?v=rkVuVagvBAU

Documentary
http://www.youtube.com/watch?v=7vyx6ue7K6o

Mambo pt.1
http://www.youtube.com/watch?v=8W9LA7JTtew

list of additional youtube search results for "katherine dunham"
http://www.youtube.com/results?search_query=katherine+dunham&page=1

Thank you to James for providing these links.

Happiness is a warm blanket.

If I could give new City of Hope patients one piece of advice, it would be, "If someone offers you a warm blanket, take it."

There's nothing like a fresh warm blanket, straight out of the oven, to turn a cranky patient into a cozy one. If someone could figure out how to bake chocolate chip cookies in there at the same time, patients would flock to the City of Hope like preteens to a Miley Cyrus concert. Even patients without cancer would be begging for admission.

Today, I just couldn't bear to walk from the hospital, where I had my x-ray, to the clinic, so I requested transportation (aka wheelchair service). I knew what was coming next.

The technician's first question: "Would you like a warm blanket?"

My answer: "You betcha!"

The Final Thank You

I just received a call from Bob's nurse practitioner at the VA Hospital Hospice. Bob was found not breathing at 4:20 pm on Saturday.

Kiki and I left his room at 3:10, so the actual time of death must have been shortly after we left. I'm so grateful that we got to lavish two hours of love, affection and thank yous on him. (And, of course, just so he knew us, we had to throw in a few barbs and teases as well.) He could no longer speak, but we know he heard every word and would occasionally squeeze one of our hands.

I think I mentioned in an earlier blog that I wouldn't have gone to SF had I known how sick I was. I'm glad I didn't know.

EOS SOS

Where do I begin?

As predicted the x-ray of my chest is worse and the eosinophils (EOS) are still out of control. So. . . . what's going on?

Dr. Forman knows I'm a researcher, so he first explored how much I know about illnesses related to eosinphils. I told him, "From what I've read, the elevated EOS and my symptoms seem consistent with either Idiopathic Hypereosinphillic Syndrome (HES) or Chronic/Acute Eosinophillic Leukemia. They present the same way, but the leukemia version has clonal cells."

It turns out, that's what he was thinking/fearing too. Both are rare conditions, but for the disease to follow on the heels of MCL (another rare cancer) would be as likely as being struck by lightning. Twice.

Nonetheless, time is of the essence in arriving at the correct diagnosis, and Dr. Forman knows this. Those out of control EOS can start to invade and damage all the organs of the body, including the heart. He immediately wrote up orders for another chest x-ray and chest CT scan, and I'll revisit him on Thursday. I'm also waiting to find out when I'll be scheduled to see the pulmonary specialist. Dr. Forman said the specialist would do a biopsy to find out if EOS are in the lungs.

It's so comforting to have the kind of care where things are happening immediately and I don't have to exert any of my own energy to make them happen. And I'm grateful that all of this is being done on an out-patient basis.

I guess I need to keep hitting the chocolate milkshakes because I'm still losing weight. (Did you know that a Jack in the Box choco shake has 880 calories?) I'm down to a scrawny 113 pounds.

I was looking forward to going back on the steroids so that I could once again become a fully functioning human. But the steroids would affect both the blood and chest results and cloud the diagnosis. (As a matter of fact, Kiki was encouraging me to contact Dr. Forman for steroids while we were in SF, and I told her pretty much the same thing about not wanting to distort what Dr. Forman would see today.)

Darn! I had the most fun and interesting week planned, starting with dinner at Tender Greens in Culver City and an IWOSC meeting tonight. Later in the week, I'd planned to have lunch at Larkin's with three girlfriends, drinks with friends I haven't seen for years and Mojitos on the lawn at the Caltech Athenaeum. I was also going to be a guest on Shirlee Smith's Talk About Parenting cable show. I don't think I want to be gasping for air while I'm on the air, so I'll have to call in my backup.

Bottom line is that we still don't know what "it" is, but we have our suspicions and the brilliant Dr. Forman is on the case.

It was the 'roids

Since we didn't know if my lung infection was viral or "other," my doctor put me on both an antibiotic and a steroid. I felt increasingly better each day, but I didn't know which drug to thank for the improvement.

Now we know. I continued the antibiotic, but, per my doctor's orders, phased out the Prednisone on Thursday. I crashed on Friday.

I've had difficulty breathing since Friday afternoon. I can take no more than 50 steps before collapsing. I "black out" after taking about ten steps, so I apparently am having trouble getting oxygen to the brain. I try to stay calm while I talk because I start hyperventilating if I get too excited. My temperature has risen to 101 for the last two nights.

If I had known this was going to happen, I would not have made the trip to SF. I'm so grateful that my friend Kiki was with me. She waited on me and made my life easier by dropping me off and picking me up (at the VA, hotel, restaurants, etc.) so that I never had to walk far. She's a very nurturing friend.

I have a couple of theories about what's going on with my lungs, the whacky eosinophils and my GI symptoms. It seems clear to me that it's all related, but I'll discuss this with Dr. Forman this afternoon.

I have appointments for a chest x-ray, blood draw and consultation with Dr. Forman this afternoon. I'll keep you posted.

I need a home!

If anyone in the Los Angeles area is interested in adopting Nelly, please email me at susancarrier@sbcglobal.net and I will provide contact information for Nelly's care takers.

A Quick Update

Not much new to report, but I thought I'd do a quick update before leaving for SF with Kiki:

- Bob is spiraling down, but is hanging in.
- Puss and Betty (our dog) can sit on a couch together, incident free, as long as I'm in the middle.
- I'm feeling stronger and less fatigued every day.
- I'll have another chest x-ray, blood draw and appt. with Dr. Forman on Monday.

And I just wanted to give a big thank you to Cynthia, who brought me dinner in bed when I was feeling at my worst. The menu, which included her favorite beef ramen noodles, may not have been the most nutritious, but the presentation (very important to me) was perfect and the love priceless!

Prednisone, pounds, parasites, passings & pie

I had another chest x-ray and visit with Dr. Forman this morning. My chest is clearing up and I'm feeling significantly better today. Not 100% yet, but much better. I think I have the Prednisone steroid to thank for my new-found energy.

I was already on a downward weight trajectory before the Prednisone, but now I'm losing at an even faster rate - four coveted pounds in one week. I wanted those pounds. I needed those pounds, but now I'll have to earn them back. (I'd like to gain a total of 14.)

I was eager to find out if I'm the "hostess with the mostest." That is, am I the host to a parasite? Alas, the results haven't yet come back from the lab. I told Dr. Forman, "I never thought I'd say this, but I hope I have worms." He hopes so too, since that will be an easy explanation for
a multitude of unexplained symptoms.

I received a call yesterday from James, my cat-napping partner in crime in SF. He saw Bob on Tuesday and Friday and fears that he only has days to live. He has stopped eating and refuses a feeding tube.

My friend Kiki and I plan to drive up together to SF this weekend for a final goodbye. I'm not good at goodbyes (are any of us?), so I'm struggling with this. I found something helpful while reading the comments on Roy Siever's My Cancer blog this morning. The commenter recommended saying "thank you" instead of "goodbye."

With that in mind, I'll amend my previous sentence to read "a final thank you."

(Now, in an effort to pack on pounds, I'm heading down to Pie 'n' Burger in Pasadena for a chocolate milkshake and a burger. I may even spring for a slice of pie.)

FAQ

How are you feeling? Either the steroid or the antibiotic is working its magic. The prednisone gives me a little artificial boost of energy. I'm coughing much less and walking a little farther before I start gasping for air. All in all, much better.

How is Puss getting along with the other Carrier pets? I try to do at least two "meeting of the mutts" sessions per day. At first, Puss would let out one continuous hiss when she encountered any of the creatures. Now she pauses for several long seconds between hisses. And she's no longer lashing out with her claws at Betty. Good signs! (Since I wrote this, we had a hiss-free encounter between Betty and Puss this morning.)

When are you going to post on your food blog again? After a two-week dry spell, I just posted on Open Mouth, Insert Fork this morning. Click here if you're ready for a slice of fresh peach pie.

You're beautiful and I love you

When I was going through treatment last year, my friend Bob would leave a lavish message for me once a week: "This message is for my dear and beautiful friend Susan to tell her that I love her."

Call me easy, but these words in Bob's mellifluous voice would melt my heart every time.

Is it any wonder I make mad dashes to SF? Now that Bob is fading, I never miss an opportunity to tell him, "You're beautiful, and I love you." The words always bring a smile to his face.

The titles on Bob's bookshelf reveal his beautiful mind.
I love the title "Black Intellectuals, Black Cognition and the Black Aesthetic."

Off to CoH

After a couple of weeks of low grade fevers (99.9), my temperature spiked last night to 102.3.

I avoided a late night trip to the emergency room, but I'm heading off this morning for blood work, a chest x-ray and an appointment with Dr. Forman. Something's going on in my body. I just don't know what it is.

1:25 pm UPDATE: X-rays of my lungs look like they did when I was hospitalized in January. We don't know if it's pneumonia or lung damage from the bleomycin chemo drug that I received before the stem cell transplant. I have meds for both (antibiotics and steroids), so my bases are covered.

We don't know how or if this ties in with the high EOS count. I return to CoH on Monday.

Where can I get this?

Maybe Megan Fox and I can split a case of Kelp-a-Malt.

While you were sleeping . . .

Mothers of young infants are frequently told, "Nap while the baby naps."

I often take this same approach during visits with my friend Bob. After he fell asleep, I curled up on the love seat in the room and attempted to join him in slumber.

But sleep wouldn't come, and the dismal hospice room was depressing without Bob's presence. You see, the VA is in drastic need of a cosmetic overahaul. Much of the medical equipment looks rusty, the bare walls are dirty and the floorboard mouldings are cracking and peeling away from the walls. But the hospital, located on a bluff in Lincoln Park above the Pacific Ocean, is surrounded by beauty.

So I slipped out of the room and drove a few blocks east to visit the Women Impressionists exhibit at the Legion of Honor Fine Arts Museum for my transfusion of beauty. The exhibit features the four major women artists of the Impressionist era.

The Legion of Honor is just a few blocks away from the VA.
I love the way the bridesmaids' dresses coordinated with the glass sculpture by Chihuly.



This magnificent view is from the entrance to the Legion of Honor museum

These were taken in front of the VA Medical Center's dining facility. The food sucks, but the view rocks.

Bob was still sleeping when I returned an hour and a half later. I curled up on the love seat and day dreamed about my favorite memories with Bob and the surrounding beauty of Lincoln Park.

The "To Don't" List

Our new cat Puss is still in solitary confinement in our bathroom while we slowly integrate her into a household with a dog and two other cats.

I expected her to be screeching and complaining the whole time, but she's not. The only time Puss lets out a soft "meow" is when she's ready for another can of Fancy Feast. Even when it's not feeding time, she's happy to see me and moves in for a scratch between the ears or a pat on the rump.

Perhaps this is an advantage of adopting an older cat. She's not wasting energy kicking up her paws or engaging in noisy protests. And she's not trying to bite the hand that feeds her.

I dig that cat's attitude. There are certainly times when we should be outraged by circumstances in our lives, scratching and clawing and screeching for all we're worth. But there are also plenty of times when we just need to settle in and make the best of our circumstances, just like Puss is doing.

I was listening to the audio book "Good to Great" on the way back from SF. The management book by James C. Collins aims to describe how companies transition from being average to great. While it's debatable if this is a "great" book, at least one point has stuck with me. Collins said that the CEOs of great companies did pretty much the same things as CEOs of average companies. The difference was what they weren't doing.

Collins calls those activities the "stop doing" list, but I like to call it my "to don't" list. On top of my list is the energy I expend in futile scratching and screeching that gets me nowhere. I haven't yet listened to the audio tape I found online about six ways to "stop doing" the things on my to don't list, but I will.

I don't aspire to be the CEO of a "great company," but I would like to become a cool cat like Puss.

How about you? What's on your to don't list?

Those wacky eosinophils

For the last three months, I've been writing about my elevated eosinophils (aka EOS). The EOS are a component of the white blood cells, and usually kick into high gear to fight a parasite or an allergy. The norm is 0-6%, but mine have been hovering around 55%.

In May when we first discovered the high count, we talked about the possibility of a parasite. But since I was symptom-free, we figured it was just a temporary allergic reaction.

In June, we thought the rise in EOS may have been due to the Minocyclin I was taking for my cutis laxa (lax skin). Minocyclin has been known to cause elevated EOS counts, so I went off the antibiotic.

I figured that I would go in today for my appointment with Dr. Forman and find out that my EOS count had settled down. But it hasn't.

The EOS was at nearly 55 and my overall WBC count has risen from 9 last month to 15 today (11 is high normal). And, lest anyone with leukemia start shaking, Dr. Forman, said that the elevated WBC was in direct correlation to the EOS, so not to worry.

So . . . I'll be collecting three stool samples this week and then revisiting Dr. Forman on Monday. If it's a parasite, I'll be referred to a GI specialist. If not . . . I'll cross that bridge next week.

It will be a relief to treat whatever this is. I've been experiencing a lot of troublesome symptoms for the last month, and I've felt especially sluggish for the last two weeks:

- Fatigue
- Unexplained weight loss (six pounds in two months)
- Dizzy spells
- Shortness of breath
- Chronic cough
- Lots of mucus in stool (and other GI complaints)

(With all this in mind, aren't you amazed that I drove solo to SF and pulled off the great cat-napping caper?)

The Great Cat Napping Caper

My mission, which I decided to accept, was to get one pissed off Puss into her cat carrier in SF and back to her new home in LA.

Luckily, Bob's dear friend James, agreed to be my cat-napping partner in crime. When James isn't busy trying to pull off the purr-fect crime, he's spinning discs at some of San Francisco's finest underground gay night clubs.

Our mission had its share of challenges, but we were ready for each cat-astrophe. (Sorry - can't resist. I watched way too much Batman with Adam West as a child.)

Obstacle one: We couldn't find a parking place within a one-mile radius of the apartment
Solution: I pulled out my temporary disabled parking pass, which is good until July 18, and parked confidently in a handicapped spot just a block away.

Obstacle two: We had no key to the outside door of Bob's apartment.
Solution: We hung out on the front stoop until a trusting couple let us in with them.

Obstacle three: Puss refused to come out from under the bed.
Solution: James lifted the mattress while I shooed her out. Of course, we first removed any impossible-to-reach cat hiding places.

Obstacle four: Puss slid under one of the book shelves and dug her claws into the carpet. She hissed and tried to bite when I came near.
Solution: We found a pair of ski gloves in Bob's closet. I pried Puss's paws away from the carpet and, with the help of James, crammed her into the cat carrier. I'm unscathed!

We brought Puss to see Master Bob at the VA Hospice for one last goodbye. Bob perked up as soon as he saw his precious Puss.

Puss was surprisingly calm (but not cat-atonic) during her time in solitary confinement in her cat carrier. After a six and a half hours car ride, she's adjusting to her new home with one dog, two other cats and no Bob.

Final SF Attraction

My dear friend Bob in SF, who was diagnosed with prostate cancer earlier this year, is fading. His primary care physician at the VA Hospital called me on Wednesday to let me know that Bob was moved from the hospital to hospice care. "Come sooner rather than later," he urged.

I'm driving up today for what I hope won't be my last visit with Bob. His beloved cat, Puss, will travel back with me on Sunday. Our dog Betty will not be happy to have a third cat in the household, but she'll just have to adjust. Like all of us.

Walk this way!

It's been almost 18 months since I heard those unexpected words, "You have lymphoma." My first thought was, "What the heck is lymphoma?"

It didn't take long for me to come up to speed on the differences between Hodgkin's and non-Hodgkin's lymphoma, indolent and aggressive diseases, auto and allo stem cell transplants.

I'm indebted to the Leukemia & Lymphoma Society (LLS) for the excellent resources they provided to help me understand my diagnosis and treatment options. Their ongoing educational seminars and tele-seminars have also been invaluable for keeping me educated on the latest and greatest treatments for relapsed mantle cell lymphoma.

More important, I owe them big time for their mission to find a cure for the full spectrum of blood cancers - leukemia, lymphoma and multiple myeloma.

To support the mission of the LLS and in memory of two friends who lost their lives to leukemia and myeloma, I've decided to be a team captain for the LLS's 2.8 mile evening walk and festival, Light the Night.

When: Sunday, September 14, 2008
Where: UCLA Campus, Westwood

Schedule:

4:30 p.m. Registration Begins

6:30 p.m. Opening Ceremonies

7:00 p.m. Walk Starts

To sign up to be a member of the Cancer Banterers walking team, click here.

If you're nowhere near UCLA or if you can't participate but would like to make a donation, click here.

To find out more about the event, click here.

This event will be a lot of fun with food, festivities and illuminated balloons during the walk. I hope you'll join me!

Road Trips and Lists

Check out the two latest posts on Open Mouth, Insert Fork:

• Road Trip!

• Makin' a List, Eatin' it Twice

Here's hoping your holiday 3-day weekend was filled with good times, good rest and good eats.

ONE YEAR AGO TODAY: I contemplated the meaning of surrender.

More Vita Interruptus

One year after a cord blood stem cell transplant, my friend Ann just discovered that she has relapsed with ALL (acute lymphoblasic leukemia). She and her husband Chris were scheduled to close escrow on a new house yesterday. Instead they're at MD Anderson (MD INNderson?) where they're waiting to find out the treatment plan.

Two years after a donor stem cell transplant, my friend Nancy developed pneumonia and is waiting to find out today if she'll be hospitalized at Hotel Hope.

I keep telling myself that these are just examples of life interrupted, not life ended. Just the same, I obsessively check the blogs of Ann, Nancy and Brad for updates. I hope you'll join me with your good thoughts and prayers.

At the same time, I'm dealing with the continued deterioration of my dear friend Bob in SF. His condition is not improving with treatment. He just turned 81, and I wonder if, at this stage, we are talking about a permanent interruption of life.