Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
The important thing about cancer is what it teaches us about living. It gives us the chance to set things right, to make plans "just in case." It allows us the opportunity to cherish the small pleasures of the everyday. Even though we believe the ending will not necessarily be a good one.
I've known that the day would come since the beginning of June, 1996. He had been diagnosed with prostate cancer after a biopsy in January. Referred to the Naval Hospital in San Diego, we had decided on radiation therapy as a treatment. Prior to radiation, the Urologist wanted to perform a lymph node dissection to make sure that the cancer had remained in the prostate gland. Since he had a very low PSA (9.7) but a fairly high Gleason score of 7 (out of ten) which provided mixed signals, we thought that a prudent step. (Low PSA number was a good sign, while the high Gleason score said the cancer was aggressive.)
At the time of surgery, the biopsy was negative for spread. However, two weeks later we learned that additional testing turned up a positive result meaning that the cancer had already spread to the nearby abdominal lymph nodes. There was no longer any point to radiation or surgery since the cancer was now considered systemic. In 1996 the only treatment was hormonal manipulation or surgical castration. Neither therapy would result in a cure.
At that time there was little to no research being done to cure late stage prostate cancer. The popular opinion seemed to be that it was a disease of old men and that it was slow growing. And that opinion is true for some prostate cancers, but not for all. When we found how little money we, as a nation, were spending on research we were appalled. So we became politically active in the effort to earmark funds in the DOD budget for research into a cure for prostate cancer. Fortunately for us, President Clinton ordered the VA to include prostate cancer in its Agent Orange category in 1996.
But all of that aside, for two weeks after receiving the results I was numb, paralyzed by fear of the impending loss. No, I was afraid of more than that. I was afraid that I would not be able to help him in the coming battle. I was afraid I would fail to hold it together long enough to get to the finish line. That I would fail him and fail myself. We had just bought a house and a new car and now a doctor was saying 18 months.
Weeks passed, and then months as we immersed ourselves in research and therapies, and learning how to lobby. He joined a clinical trial that used a new technique of administering hormonal therapy on an intermittent basis. And then years passed and doctors started to marvel. He should have died. Why hadn't he? Repeat biopsies confirmed the aggressive nature of the cancer, but still he continued to fight it. And he survived. And we grew much closer for our shared battles.
We knew how it would end. We knew that sooner or later the cancer would overcome the therapy and eventually begin to thrive on it and spread to the bones. Probably the pelvis first. We knew that bone cancer is one of the most painful of all ways to die. But we were ready to face that battle when it came. We had done all that we could to see research dollars invested in new therapies and alternate strategies. According to our doctor, the current state of medicine would guarantee us a good eighteen months to two years after the cancer metastasized to the bones.
For sixteen years we knew the end was coming. There were times when his PSA rose while he was on therapy and we were sure that the final stage had begun, only to have it recede once more. We learned to live with fear and hope simultaneously. And we decided to use what time we had to create memories for the future.
Throughout those 16 years I envisioned my widowhood. I rehearsed it in my mind. I thought about what I would do and how I would live once he was gone. We talked about finances. He wanted to make sure that I would be able to live in this house that we had made ours. We knew that in the worst case scenario we would have time to tie up loose ends.
What we didn't know was that the cancer wouldn't kill him. What we didn't plan on was a murderous infection that robbed him first of his ability to communicate and then of his regular heartbeat. And finally of his ability to breathe.
It wasn't supposed to end this way. It was supposed to be the cancer that killed him, not a careless hospital aide, or nurse, or doctor, who failed to take appropriate care when treating an elderly patient with a bad back. We really did not see this coming.
But as a result of our 16 year journey, when the end did come we were at least better prepared than we would have been otherwise. Cancer gave us that. It gave us the opportunity to prepare to live our lives the best way that we possibly could. It made us address issues that most couples refuse to even consider.
The first few years were very hard and the stress level was very high. Therapy and anti-depressants helped, but we actually gained our strength from each other. As the years passed we grew stronger, and if possible, more in love. We had a mutual enemy, and in fighting that enemy we found out just how capable we were as individuals.
I know that that sounds like a making-lemonade-from-lemons type of story, but it wasn't. It was mostly a hard fought war with some very ugly battles along the way. It was painful and it was frightening. And it was hard.
But the benefits include the fact that I was able to pay off our mortgage yesterday and the car last week, which is what he wanted. I will no longer have the same income, though I will have more than enough to stay in our home. Careful planning and a lot of good fortune is responsible for that.
More importantly, the awareness that cancer was a constant presence in our lives forced us to try to live each day like it was the last. No one, of course can sustain that over time. But that the effort is made, and even a few times achieved, makes the life more worth living.
Although I must say, even with all of that, no planning, no envisioning, no mental rehearsal has really prepared me for the widowhood thing. But that is a different diary.