Returning to Normal

I suspect that many Cancer Banter readers may have rolled their eyes (I saw that) after my last post, The Healing Power of Pecan Sticky Buns. Yes, I admit that I was so encouraged by my sudden progress that I figured I'd be my old self before McCain's acceptance speech at the Republican National Convention.

But reality set in over the weekend. After I wrote Paula that my recovery back to normal was going to be slow, she cautioned: "Please print this [my declaration of slow recovery] out and tape it to your bathroom mirror! I KNOW you--you'll start feeling peppy and decide you want a pool in the back yard and you'll just start DIGGING." She knows me too well.

Even though I continue to do just a bit more each day, I'm discovering that I still have serious limitations. I puttered in the kitchen for 30 minutes this morning - nothing more exerting than cubing a watermelon and loading the dish washer - but I was left breathless and tired.

Four friends came by with a beautiful brunch feast at 10 am. We had homemade lemon pound cake, chocolate brownies and fresh fruit galore (strawberries, blackberries, blueberries, bananas, watermelon, grapes), all washed down with freshly brewed strawberry-kiwi black tea. Most of the guests ate their fruit with yogurt, but I squirted loads of high-fat whipped cream on mine. I'm counting calories, ya' know.

I was having a delightful time, but after one hour, I was worn out. I had to excuse myself so that I could rest, but I encouraged the party to continue. I came down a little later to say goodbye to my friends and to show off the latest upgrades to the shade garden.

Our shade garden, beneath the redwood trees in the side yard, is a
refreshing retreat during the Dog Days of August. (Click to enarge.)

I was hoping that I would feel good enough today to make a brief appearance at a friend's house warming party. Scratch. I was thinking I might feel good enough to show up at a friend's Labor Day barbecue. Scratch.

The puttering and the small gathering were enough for me. I was content to spend the rest of the day with my LA Times (although the Sunday edition has become dismal), NY Times and take-out fried chicken, greens, mac and cheese and corn bread from Roscoe's House of Chicken and Waffles. The day was far from "normal," but it was good.

The Healing Power of Pecan Sticky Buns

I woke up this morning feeling better. Not just a little better, but a lot better, as in, "Ooh, I get to bake the Trader Joe's pecan sticky buns that were rising overnight." Better as in, "Yum, that was a tasty 390 calorie treat, but I think I need another one."Better as in, "Hey, the thought of going up and down the stairs does not intimidate me."

I've consumed my 900 calorie breakfast and taken my meds and fed and watered the animals and I'm ready to hop into the shower. What a lark! What a plunge! (I've been rereading Mrs. Dalloway.)

Up until now, I think I was lying when I said I felt a "little better." I was just so damn tired of sounding like a negative Nellie and I wanted to believe that I was improving, but I had no evidence of that. Saying I felt a "little better" satisfied the questioner and, I hoped, would convince my body that I really was getting better.

The astute Dr. Forman picked up on this yesterday. I had told the nursing staff that I felt a "little better," and he was excited by this report. But when he saw me, he said, "Define 'feeling better.'" Busted. The only thing I could come up with was that my cough has improved.

But today I am not delusional. I am feeling better* and I am jubilant. I may even go downstairs for another one of those pecan sticky buns.

(*More energetic, less shortness of breath, no dizziness)

Thank You, Friends

I have been so touched and moved to tears by all of the comments I received after my last post, "Sicko." Thank you for embracing me and holding me up. My Colorado friend Ellen also wrote a beautiful response, but she wasn't able to post it and called to read it to me. I was moved to tears again.

I've made some decisions in regard to making my life a little easier. My most challenging time is the morning. I have a dog and cats that need to be fed. I need to make sure that I eat breakfast so that I don't take my 9 pills on an empty stomach. These tasks can be overwhelming for me. Alas, I cannot depend on the teen in the morning because of her late sleeping habits.

I decided to hire someone to come by our house in the morning on her way to work. She'll pick up the newspapers, feed and water the animals, make and serve breakfast and tea and make sure I have a pitcher of fresh water. I let my cleaning lady do these things for me yesterday (I usually refuse personal assistance), and it was a great relief.

When I went out to the City of Hope today, my goal was to be wheel chair free. I had it all plotted out in my mind how I would do it. But on the way to my blood draw, I had one of my dizzy spells. Luckily, my friend Mary was nearby, and I latched onto her.

A nurse came by with a wheel chair and announced to me, "You'll need to use this today." So much for being ambulatory.

Dr. Forman and I discussed the dizziness and fainting spells and how they have increased in intensity and frequency. Could it be related to low blood pressure? I now have a prescription to raise blood pressure. Could it be heart related? I have an appointment with a City of Hope cardiologist. I'm relieved to be seeing the cardiologist. I've been corresponding with a few people with eosinophillic illnesses, and they all have advised me to get an EKG because the EOS often infiltrate to the heart.

Yes, I need to raise my blood pressure. I need to gain weight. It's as though I live in the backward land of Bizarro. Let's see . . . maybe I should raise my cholesterol too. Perhaps I should take up smoking while I'm at it.

Sicko

Last year, while going through Hyper CVAD and an auto stem cell transplant, I discovered that I'm stronger than I thought.

This year, while battling my mystery illnesses, I'm discovering that I'm weaker than I thought.

Seeing myself as strong and resilient was a big part of my image during chemo treatment. My goal was to keep the pep in my step and to never look or act like a "sick" person, regardless of how I felt. I was able to throw a baby shower for my god baby on a Saturday afternoon and then drive myself to the evaluation and treatment center at CoH for bloodwork. I found out that my hemoglobin had hit an all-time low of 7.6 (12 is low normal). Who knew? Certainly not me. So I spent my Saturday night getting a transfusion while the staff played disco tunes from the 70's. Memorable evening!

As strange as this may sound, I especially didn't like my doctors and nursing staff to see me as "sick." The nursing staff often joked, "Is she a patient or visitor?" because I always wore comfortable but stylish yoga-inspired clothes, not hospital gowns or pajamas during my stays at Hotel Hope. God forbid that I should look like a patient. I loved it when Dr. Forman said things like, "I thought you would look sick as a result of (fill in the blank), but you don't."

But all of that has changed. A couple weeks ago Dr. Forman saw me for the first time being transported in a wheel chair. I was mortified and half jokingly hid my face from him.

Last week my friend Karen brought me out to the City of Hope. I walked on my own steam to the clinic exam room and then asked one of the staff to let Karen know where I was. She and the nurse came in with the wheel chair. I asked the nurse to please remove the incriminating device, but she explained that they used it to carry Karen's bags. I did not want Dr. Forman to think that I had to be wheeled into the exam room. Finally, I said to Karen, "Please, you have to get that out of here. It's very distressing for me." I look at it as a mocking symbol of my weakness.

Now when I say that I don't want my doctors to view me as "sick," I mean that I don't want to LOOK sick. I think I've been very good at communicating all of my symptoms, but I do it in a clinical way, as though I'm talking about someone else. But with my stick-thin frame and low energy level, I'm not fooling anyone. I no longer look like a "well" person.

After I recovered from my lung damage in January, I felt invincible. After nearly a year of treatment and a successful remission, I felt I could do anything. I pushed myself physically, professionally and personally. I took risks. I was not afraid of failure. I decided to start my own marketing consulting business. I made a life-changing personal decision about a relationship. I pole danced in front of 300 people.

All of that suddenly changed in July, at the onset of this illness. Now I'm plotting how to get up and go to the bathroom without passing out.

I know that there must be a lesson in all of this somewhere for me. I just don't know what it is.

To Walk or Not to Walk

I do believe that my lungs are improving. The progress is slow, but it's there.

I am still so far away from being a fully functioning human being. I still have to elaborately plot out trips to the bathroom to avoid a blackout spell. I'm still out of breath after a flight of stairs. Even pleasurable activities, like going for a mani-pedi with a friend, tire me out.

With that being said, I'm looking at my September calendar and trying to figure out which engagements to keep and which to strike. The most important date is September 14, the night of the Leukemia & Lymphoma Society's Light the Night Walk. That's a little more than two weeks away. Will I be up to an action-packed evening that culminates in a 2.8 mile walk? Ordinarily, that would be nothing, but I haven't walked for more than 200 paces without a break for the last month.

I should be in high recruitment mode, trying to build up my team of walkers, but now I don't know what to do. I don't know whether to forge ahead under the assumption that I will have bounced back completely by then, or just say, "I raised $550 and that will have to be good enough." Maybe I should see how I feel in one week. Maybe I should recruit walkers with the caveat that I may not be there.

I would really appreciate your thoughts on this.

Ironic Death

Dave Freeman, author of 100 Things to Do Before You Die, didn't get to complete his bucket list before kicking the bucket. At age 47, he died as the result of a fall and head injury.

He had only completed half of his list.

(For my take on the "Before You Die" publishing mania and my quest for the perfect purse, click here.)

I need fat!

I frightened myself tonight. After emerging from the shower, I caught a glimpse of my naked body in the mirror. I wasn't prepared for what I saw - a skeleton with skin.

Yes, I continue to lose weight, in spite of my attempts to consume at least 2,500 calories a day.

I have at least two ideas to put on pounds fast:

Go back to college: Is it true what they say about the "freshman fifteen"? I went from 115 to 135 in my first two months at a small Southern college. Biscuits and gravy. Grits and gravy. Gravy with gravy. Fried gravy. And lots of butter on homemade rolls fresh from the oven. I couldn't get enough.

Eat, Pray, Love: Author Elizabeth Gilbert gained 23 pounds while eating her way through Italy. I can't think of a lovelier way to fatten up.