Sunday, July 25, 2004

This state I am presently in is almost surrealistic.  I am no longer worrying that feeling good might contribute to my tumor growth.  Instead I now have to consider that my mental and physical well-being might contribute in a positive manner to boosting my immune system to defeat the cancer – especially my immune cells stimulated by the PanVac to recognize the tumor cells.  This change in my mindset together with the relief of no longer having to worry about the uncertainty of the protocol approval process is having a very positive effect on my outlook.  At dinner tonight (possibly aided by an exceptional Zinfandel – Ridge Geyserville 1990) both Bob and I found ourselves projecting plans for September and even October, something we would not have done even a few days ago. Regardless of the outcome, this is a very pleasant state to be in for the immediate future.

Saturday, July 24, 2004

Part 2 of the journey:  Today I became the first person to be treated at the NIH with the PanVac vaccine. This represents a significant change in the approach to my treatment and even more, requires a totally different mental approach on my part. With the chemotherapy, my goal was to survive the treatment and to use my mind to minimize the awareness of effects of these poisons on my body. I actually never truly was conscious of the impact of some of the side effects of the chemotherapy until the recovery period after the last round when I realized how much of my energy and zest for living was returning. Compared to what I feel was a “passive” response to the chemotherapy, this immunotherapy now requires an “active” response on my part.  This is now MY playing field – my immune cells against my tumor cells – all “self”, even though some of it has escaped normal regulation. I have to hope that my immune cells – antigen presenting cells and lymphocytes- can get sufficiently “superactivated” by this therapeutic approach to find the addresses of these tumor cells and destroy them.  The concept has my psyche totally involved in the process – I want to win this battle. I now have to focus all of the wasted mental energy associated with the frustration and anger of the waiting period into positive and aggressive thoughts about the teamwork of my immune system to get this job done.

In terms of the actual administration of the PanVac it is thus far totally insignificant compared to the apprehension and immediate side effects associated with being pumped full of poisons.  I received a single injection of the vaccinia virus vaccine into my leg followed by an injection of the immune booster GM-CSF into the same site. I did the GM-CSF injection myself and will continue to do so for the next 3 days. I will then get boosts with avian Poxvirus at two week intervals for a total of 3 boosts. Bob and John Letterio, who worked very hard to get me into this trial, were there for the grand event. The NIH personnel who have been involved in my treatment have been superb – confident, competent, and caring.

Tuesday, July 20, 2004

Live the life and do it with gusto!  Tonight I came home exploding with frustration and anger over the fact that CTEP is still “reviewing” the amendment to allow me to be treated and that “if no problems are encountered, it may be signed by the end of this week”.  Since this was our night to go to the YMCA to do the Nautilus circuit, we “one-upped” it by biking there and back.  When we got back, we found a surprise package waiting for us on the doorstep from my cousin Ridgely in California. Ridgely and his wife Colleen founded the DaVera olive farm and now also produce some wonderful Rosso wine from grapes from the surrounding Sonoma vineyards. So I whipped up some delicious tomato sauce with fresh basil and rosemary from the garden and Bob and I sat eating for 2 hrs, laughing and crying and drinking the wonderful gifted wine.  I haven’t been able to drink more than a few tablespoons of wine for the past two months, since my chemo-stripped mouth reacted badly to them.  But tonight……we drank the bottle dry.  Life is indeed good!

Monday, July 19, 2004

This has been an indeterminably long week of waiting. With the goal and the diversion of the wedding now behind me, the anxiety of remaining off treatment has become overwhelming.  It has consumed my brain and put my emotions on edge. When I heard that the FDA had signed off on the primary CEA/MUC1 PanVac protocol last Tuesday I went into hyperspace and was so pumped up that I did 5 extra pounds on each component of the Nautilus circuit. Then I got quite depressed reading some of the articles in the Science focus issue on immunotherapy, realizing how little we actually know about the function of the human immune system, and – even closer to my way of thinking – how little we still know about how molecules like TGF-beta interfere with immune surveillance of tumor cells. Now I am dealing with the good news that the protocol amendment to permit my treatment was submitted on Thursday and needs only one more signature. So sometime within the next week I should be able to start the next phase of my treatment.  Maybe I’m unrealistic, but despite all the naysayers, I have great confidence in my immune system, and in the ability of this vaccine to stimulate it to target my tumor cells, even though it failed miserably in recognizing two huge metastatic tumors fed by the goodies in my ovaries. I am also optimistic because even if this therapy fails, there is evidence that it may make subsequent chemotherapy more effective.
Bob and I came to the beach this weekend to get our thoughts together.  Somehow the physical activity of biking, running, and swimming is able to stabilize my brain and reduce my anxiety. We have had a glorious weekend and have high hopes for the week ahead. 
My hair has now started to grow back – it’s only about 1/8” long but I get a thrill when I rub my now fuzzy head.  So does Bob. Losing my hair was never a major concern to me, but getting it back is actually quite exciting. In fact, it is just another sign that I am recovered from the chemotherapy and ready for chapter 2 of this journey with an insatiable appetite for life and for living it to the fullest. 

Saturday, July 10, 2004

Drea-ea-ea-ea-eam, dream, dream, dream……Everly brothers (All I have to do is dream)
I feel as if I am living in a dream world – in a space not previously available to me. From the beginning of this odyssey, I set as a goal what no one would promise me – to be alive and well at Kathy’s wedding. Now it is all behind us – as perfect from beginning to end as one could dream. The wedding was beautiful, outdoors in a most peaceful setting with chirping birds in the background– the weather absolutely perfect. And Bob and I danced and cried our hearts out to the lyrics….whenever I want you, all I have to do is drea-ea-ea-ea-eam, dream, dream, dream. I am totally recovered from all effects of the chemotherapy and was able to play in the pool and hike with our grandchildren. Matthew, who was initially taken aback by seeing me without hair, told me on the hike, “Nana, you look really, really old without your hat on, but when you wear your hat, you look much younger!” The only “imperfect” aspect of the weekend was the fireworks on Sunday night, when all of us trudged up to an open field on a hill above the hotel and watched one of the purported “10 best displays” in a torrential downpour with lightning flashes which accented the memorable event. But a hot shower and some hot tea fixed everyone up!

The visit with our dearest friends from Germany was extended after the wedding by 4 glorious days at the beach - again the stuff of dreams. The weather was perfect – not too hot or humid – and we reveled in swimming in the ocean, running/ walking on the beach (reaching our goal of 7 miles each day), going on boat rides in the bay, and talking and laughing over wonderful meals together on the patio overlooking the canal, all topped off by singing old German folksongs in perfect harmony.

On the medical front…..I returned from the beach late Thursday night so that I could be admitted to the NIH as a patient early Friday morning. After a complete physical, blood work, CAT scan, the good news is that I again remarkably have no detectable metastatic disease or ascites and my health is excellent. The only bad news is that approval of the exemption for my treatment on the PanVac immunotherapy trial will likely take another 2-3 weeks. While I am terribly frustrated by this wait, both of my doctors agree that this is the right course for me. I am now taking Celebrex (a COX2 inhibitor) as there is some evidence from juvenile polyposis that there may be some synergism between the immunotherapy and this drug.

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