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.