Saturday, August 28, 2004

The normalization of our lives continues. The longer that I continue to feel so good, the more Bob and I are getting back to our former lives of working sometimes long hours and focusing more and more of our conversation on our work. We now less frequently slide into emotional outpourings. We’re slowly beginning to accept the present and realize that we can not predict the future.

As for the present, although it is very “non-clinical”, I have the distinct feeling that my immune system is beginning to get the upper hand in this battle. Within a few days of the second vaccine boost, various non-descript unpleasant feelings “below the diaphragm” seem to have disappeared and my mental state is now very optimistic. I realize that I am less than 6 intense months into this diagnosis and that we have a long way to go. But at least we’re getting some breathing room. I start each day with a 2 mile run with our dog Kiara – a celebration of being alive! My oncologist says that I am the healthiest patient he has ever treated, and I’m trying my best to make sure that it stays that way.

Meanwhile we’re overjoyed to be reaching one benchmark after the other. We celebrated Bob’s birthday on August 14th. And on August 22nd we celebrated our 40th wedding anniversary with a perfect weekend at the beach with my sister and brother-in-law. We had to “endure” a 1964 Barolo to maintain a tradition, but fortunately also had some excellent champagne and a spectacular Zinfandel to wash it down!

The week ahead is highly significant. On Wednesday my lab will be site visited and the transition to our new lab chief will be complete. This is a huge hurdle for me. Next to my family, nothing means more to me than to assure the future of my lab. Then on Friday morning I get the third and last vaccine boost to complete the first phase of the immunotherapy protocol. We will celebrate by having Greg and his family join us at the beach for the holiday weekend. One month later on October 1st I will have another CT scan and endoscopy, as well as assessment of my immune response. If all goes well, I will become eligible to continue on the study with monthly boosts. That would likely mean that we have indeed found a spot on the mountaintop protected at least temporarily from the storm. Compared to the effects of chemo, having to endure a sore and swollen injection site for a few days is actually pleasurable, because it’s a sign that the vaccine has sensitized my immune cells.

On our walk tonight the almost full moon was just rising in the sky with a golden glow. Mr. Moon was actually laughing at us. It’s a wonderful life.

Monday, August 16, 2004

Lately, Bob and I find ourselves asking how long we will be able to stay on the mountaintop? Is there a nice plateau where we can hunker down and camp out for a while? Or are we walking on a knife-edge ready to fall off our precarious perch with hardly a moment’s notice? Good that we don’t have the answers to these questions.

Today at work I was so mentally consumed in preparing for the site visit and feeling so much like my former self that I actually was shocked back to reality when I saw myself in the mirror in the ladies room and realized that this was still me, the cancer patient with the fuzz-top hairdo – a sure reminder of where I have been and what still lies ahead. Meanwhile, we’re happy to be up on the mountaintop – and the view is magnificent.

Saturday, August 14, 2004

Back in March, when I was first made aware of my dismal prognosis, I said to Bob that he must do two things. First of all, I said that if I were to die, I wanted him to remarry, since I strongly believe that life’s moments are meant to be shared and that each of us needs a soul mate. Secondly, I told him that I wanted him to buy golf clubs so that he would have an outlet for the rollercoaster of emotions sure to be part of the journey ahead. Well, I am proud to announce that we finally have attained one of these goals – the second, of course!

With strong advice from our youngest son, Karl, Bob just bought a set of “super clubs” for his birthday (Callaway - the kind that are advertised to put the ball into the hole). Now he is so excited that, in his mind, I can tell that he is considering retiring from his job and joining the PGA tour! Our family room has turned into a putting green. Bob and John Letterio have been joking about golfing together ever since they sat together through my first chemotherapy session and again through the first vaccine administration. Now we will see if they really will get up as early as they say and hit the “links”. I am truly thrilled to see Bob have some diversion. He always plays with Karl when they are together and this should now really fuel the friendly father/son competition. For my part, I could never “relax” by playing a game where the feedback comes from having to get that little ball in the hole. I need more degrees of freedom. Rather, I’m hoping that this will give me some free time, now that we have both severely cut our travels!!

Friday, August 13, 2004

Demons of the night. I generally feel quite good physically and upbeat mentally during the day, when my brain is occupied with ongoing activities, but at night, when I am attempting to sleep, I am haunted by thoughts of progression of my disease and of the consequences to Bob. It’s almost as if a switch is flipped to throw my brain into hyperactivity when my head hits the pillow. It was better when I was being beat up by the chemotherapy. Now that I am recovered from that sledgehammer blow and into the immunotherapy trial, my head is filled with worry whether I am mounting an immune response to actively engage my tumor cell antigens, or whether the cells are now dividing happily, unchallenged by either chemo or my own virtual immune cell army. I’m slowly coming to realize that I am never going to escape these thoughts. As a scientist, I desperately want some quantitative indicator of my progress, but none are available. So I am gradually trying to adjust to the fact that I will have to come to some sort of compromise in my quest for information that simply cannot be provided to me on a daily, or even a monthly basis.

Bob and I have been discussing how to deal with this and have come to the conclusion that the best way to come to grips with an aggressive disease is with an aggressive pursuit of life! In fact, I am feeling better each day and the improvement in both my stamina and my mental focus and intensity amazes me. Both Bob and I are presently passionately involved in our work and I also have a strong commitment to continuing to improve my physical fitness. I am slowly coming to accept that instead of monitoring serum levels of some marker, I am just going to have to take daily stock of my “wellness” on both a physical and mental basis, and go with that. Hopefully my lymphocytes will take care of the rest! Now if only I can really accept this and start to get some sleep!

Sunday, August 08, 2004

The best treatment protocol… there is absolutely no better short term cancer treatment than a week of complete “normalization” with family. Our week at the beach had everything – first a quiet weekend with just Bob and me, then wonderful times with our son Karl and his family, and then, for the final weekend, a full house- being joined by my sister and Jeff, my nephew, and my newlywed niece and her husband. Our days were filled with boat rides, swimming, running, and long conversations on the beach, and of course, the grandchildren. The nights were filled with more talk and side splitting laughter around the dinner table till bedtime, leaving no room in my mind for thoughts about cancer. A great prescription!
Here are some comments on my “hairstyle” by my grandchildren:
Morgan (7) acknowledged that my ears are in fact very big!
Mikey (5) examined my hair quite carefully and then told me, “don’t worry Nana, your hair will get longer someday”. Another day he was drawing a stick figure picture of me. I pointed out that he had given me considerably more hair than I presently had. He said that it was necessary so that people looking at the picture “would know that I was a girl”!
Matthew (3) appears to have forgotten what I used to look like, so that when we were looking at pictures of the wedding when I wore my wig (which looks very much like my former hairstyle), he broke out in hysterical laughter.
No need to mention that this type of therapy is very well tolerated!

Sunday, August 01, 2004

Summer of 2004 – a summer to remember. Bob and I have been here at our “heaven on earth” Bethany Beach home since late Friday night. We’ve both been working hard in between adrenalin-rush bike rides and relaxing boat rides. The beach is not good for either of us at the moment since I (with my vaccinia virus inoculation) am not allowed to swim and since Bob (with his heel fracture) cannot walk. Tonight at dinner Bob told me that I looked “better than last year”. Amazing statement! It seems that he likes the slimmer version of me and apparently even the Marine-cut fuzz on my scalp. Plus – in my determination to recover from the effects of the chemo and put myself in a strong position for the immunotherapy – I am probably more physically fit than a year ago! Cancer does amazing things for you. It unquestionably makes your priorities clearer and your zest for life more intense.

I am now working on my presentations for the lab site visit September 1. This also represents a significant benchmark. After the initial diagnosis, I had thought that I would likely not be alive for the site visit. Then, during the third round of chemo, I thought that if I would be alive, I would likely be so weak that I would not be able to present. Now – to my delight and surprise – I think that I will be both alive and very well for the Site Visit and I find myself quite excited about the prospect. I have stepped down as Lab Chief and am relieved that the lab will have a new leader who has the energy and focus on future directions to keep the lab strong and make it even better. At the same time, I am excited by the thought that I can now concentrate on the research of my own group. I realized only this week – now that it is behind me – how much of my mental energy was drained by the period that I was “off treatment” and waiting for the protocol exemption to allow my entry into the immunotherapy trial. Now that I am temporarily at peace with my current treatment plan, I am experiencing a strong sense of well-being and am again totally engaged and energized by my science. These are truly times to treasure.

Tomorrow my youngest son, Karl, will arrive with his family and with them will come the joy of family togetherness and grandchildren. Greg and his family will visit with us at the beach on the Labor Day weekend. Bob and I will return to Bethesda Wednesday night for the lab testing and avian pox virus boost at the NIH Thursday and Friday mornings. After that, we will go back to the beach to be joined by my sister’s family. At that point we will be almost (minus Greg’s family) up to “full strength” with 12 “humans” and 5 dogs. There will be some wonderful loud and long evenings on the deck.

Last Thursday I met with Dr. Waun Ki Hong from MD Anderson – a renowned oncologist and champion of prevention of cancer and cancer recurrence. He told me that I had “scored a home run in the first inning, but now had to play the rest of the game”. Indeed, I realize only too well that I have an uncertain and probably rocky course ahead of me. But I will always remember the “summer of 2004”.

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