Sunday, April 25, 2004

About smiling.....I remember commenting one time to my Grandmother, Mutti, that she always looked so happy. Her reply to me was that not only did she "look" happy, but that she also felt happy inside. So now I want to say that the reverse also works...that is, if you smile, then you also feel better inside.

Friday, April 23, 2004

Infusion of Cycle 2 of chemotherapy is now behind me – of course, that’s the easy part. My only symptoms tonight are again the sensitivity to cold (manifested already half-way through the oxaliplatin infusion when I tried to drink some cold juice), weird eye contractions, and tingling hands and feet – not very difficult to live with! I spent most of the time working on a manuscript and doing email with Bob beside me doing the same (yes, two computers!). I went into this so confident and relaxed that my blood pressure was 104/64 – a far cry from the sky high reading at my first meeting with the oncologist. My blood counts showed a good rebound from last Friday, so my general good health is still working in my favor. Good news today is that Dr. Marshall said that he was quite confident that I will make it for Kathy’s wedding in July. I think that’s the first time he has projected ahead for me, so it made me very, very happy. We discussed the CEA/MUC-1 vaccine trial. Dr. Marshall thinks that it will be effective ONLY if I respond positively to the chemo – so we still have to hope for that result in a few weeks.

Last night my personal barber (yours truly) gave me the “chemo bob”. I wasn’t going to spend money for hair that might be “hair today and gone tomorrow”! Anyway, I seem to have lost about 80% of my hair so far, but now the drop-out rate has slowed. Since I started from such a thick mop, it still (mostly) covers.

Wednesday, April 21, 2004

It’s been a long time since I’ve made an entry. I think it’s because I am feeling too good and very close to “normal”. I took my last Xeloda (5-FU prodrug) Friday morning and celebrated the beginning of my “drug-free” week of recovery before the next chemo treatment this Friday. It has been glorious. My appetite has returned as has my taste for good food and even (excellent) wines!

The good times started by our flying to Atlanta to spend a long weekend with Greg’s family. Suzanne kicked off the good eating with an exceptional Cioppino with blue crabs, mussels, and shrimp.The best! And, of course, it was special to be Nana and Papa to Alyson and Max. The weather was perfect and we spent a good part of Saturday at the gorgeous botanical gardens – a highlight of which was the orchid house with thousands of totally unique and sometimes bizarre flowers. Even outdoors the variety of blooming plants was astounding – Atlanta is several weeks ahead of us in the advent of spring. Sunday was highlighted by “projects” with Bob and Greg installing a stovetop and Suzanne and me painting their bedroom. The last evening was highlighted by Greg’s performing a Native American Sage Smudge purification ritual on Bob and me – if I survive this cancer, no one will be able to figure out why! Before returning home on Monday we spent the morning at Greg’s Playmotion office and got to view some of the prototypes – very creative and very exciting (

As if that weren’t enough good living, upon our return home Monday afternoon we were contacted by friends in Washington for the FASEB meeting and actually entertained with relaxing dinners on the patio both Monday and Tuesday evenings. Now we’re crashing at work to get some things done before the next Chemo on Friday. Oh yes – I’ve lost about 2/3 of my hair and will probably be “breezy” by chemo time. While yet another change to adapt to, it’s hardly a major concern in the context of the battle still looming before us.

Thursday, April 15, 2004

Oh I am so high tonight I could fly! And I feel so normal finally - like this has all been a bad dream. This afternoon I met with Jeff Schlom and two young oncologists in the NCI. Jeff described his vaccine trial directed against two tumor antigens - CEA and MUC-1. My cells have already been shown to be positive for CEA so I qualify. This is an approach that might be possible for me to pursue after I complete the present chemotherapy regimen and some of the results with very advanced cancers are very promising. It's not a cure, but it might forstall or even prevent progression, which is an acceptable compromise. So while I have always been optimistic, I now truly have HOPE.

Since I am feeling so happy tonight I finally had the courage to drink one of Seong-Jin's extracts of Korean herbs, plants, fungi, mushrooms, etc. Seong-Jin had all of this sent from Korea and than had some friends in a Chinese medicine facility distill it in a special clay pot and package it for me in 60 packets (about 1/3 cup each). I am instructed to drink 2 per day to boost my immune system, suppress the development of ascites, and probably beat the tumor into submission. why? because it smells and tastes like an extract of cow dung! I am confident that those cancer cells in my stomach cringed when it hit them. Anyway, I washed it down with a beer (my first since all of this started) and popcorn! So life is truly taking on the semblence of normalcy!

Tomorrow we fly to Atlanta for a weekend with Greg's family. With that and a chemo free week ahead, life is truly sweet!

Tuesday, April 13, 2004

We experienced a defining moment tonight – hopefully an omen. Just as we were crossing the WMAL field on our after-dinner walk, the sun emerged from the stormy sky and cast the most intense oblique golden rays resulting in a full double rainbow with a foreground of sparkling soaked grass, trees in their spring foliage, and a few houses cast in a warm yellow. It was magical. Since we were in the middle of an open field we had an unobstructed 180 degree view. It turned around an otherwise very down day for me – a day that was inexplicably as low as yesterday was high. Maybe it was the barometer.

The weekend at the beach with Dorrie and Jeff was restorative with long walks on the beach both during the day and after dinner when we could watch all the planets emerge before the stars. The company was also great. My sister thinks that it’s easier to live with me in my present state of reduced energy ! So maybe there’s a positive side to this afterall.

Thursday, April 08, 2004

Today I actually felt quite normal and have finally gotten over the nausea. Now I have 2 good weeks ahead of me. THAT is truly exciting if not totally exhiliarating!! Today I went to Jimmy and got my wig cut to look like my usual - in preparation for the supposed hair loss next week. That will be something new to get used to. Otherwise Bob and I are enjoying long walks in the spring air and both feel generally upbeat. Hard to feel otherwise when you are feeling good and enjoying your work and life! Tomorrow we head to the beach for Easter weekend with Dorrie and Jeff and some ocean therapy! I thank all of you for your continued support.

Tuesday, April 06, 2004

I'm back!! I'm me again!! Got myself into the lab this morning feeling still very weak, but Lalage gave me some anti nausea pressure-point wristbands used by the British Navy that have really helped me and Kathy baked me some brownies (first time I have been able to enjoy eating anything since the chemo) and I'm almost giddy I feel so happy. I definitely made the right decision to be treated here - for better or for worse, this is where I belong (at home and in the lab). Tonight Bob and I had our first "real" dinner since the chemo and then took a beautiful walk colored by a lovely sunset. Life is to be treasured.

Monday, April 05, 2004

So - Greg says that I have to make an entry! I wanted to wait until I felt back to myself after the chemo, but that has not happened yet. Still I am optimistic that I will soon be getting back to that state. As you know I am a very impatient person and have high expectations for my resistance to whatever might "attack" me. However, I have not been a match for these poisons! However, if it knocks down the cancer, then I'm in for the run of it. Bob and I have still managed long walks everyday and Saturday was cheered up by the visit of my sister, brother-in-law, and nephew to watch the Duke game (they are all affiliated). But then I guess you know the outcome of that! I'm still hoping to get back to the lab tomorrow.

Friday, April 02, 2004

Day 1 of chemo went perfectly smoothly. John Letterio showed up as a surprise to help ease us into this. It was much appreciated. Did some work, listened to Faure on the IPOD and it was done! The sensitivity to cold from the oxaliplatin is amazing! One teaspoon of ice cream felt as if I had bitten into a cactus with a million pricklies! Later I forgot (I'm a slow learner) and tried to take a casserole out of the refrigerator with my bare hands. It sent so many zaps through my hands that I almost threw it on the floor. My palms still tingled 15 min later. Then on our walk tonight I found that I had to keep my mouth shut (with great difficulty) because the cold rain really hurt my tongue. All a part of life's new adventures. The important thing is that it is still life and very much worth living!

Thursday, April 01, 2004

Today was a special "ladies' day" with Dorrie and Kathy. We had great fun shopping for Kathy's wedding shoes (Kathy in her hiking shoes was as reluctant a "fancy" bride as I was 40 years ago!) and then Dorrie treated us all to a pedicure. It was my first and I caused quite a scene in the place since I kept giggling and reflexibly pulling away my foot whenever the lady tried to massage or brush my feet. I think that I should go into my chemo tomorrow barefoot and wow them all with my red toenails! The war with the crablords begins!

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