Wednesday, July 17, 2013

Cancer - The Beginning


I can't recall how many times, during the months that I was going through my divorce and its aftermath, that I had said to Mark through tears as he held me, "I am so weak now, but I promise you that I am strong and, someday, I will be strong, strong for you." We met nine days before I was served with divorce papers, about two and a half months after I had lost my job of ten years. I couldn't have gotten much lower. In some ways, I had lost everything.

But, I gained everything.

Mark was there for me, every step of the way.

Now, the day has come for me to be strong for him.

On Friday morning, April 5th, Mark received a call from his urologist. Results from a biopsy of his prostate had come back. He had cancer. Advanced. The statistics were not good, given his Gleason Score and the fact that every one of his biopsy samples had been cancerous. There would be more tests and scans run on Monday.

I wanted to scream after the call came. Could this be real? Why was this happening? What kind of cruel trick was this that life had played on us? We had gone through our whole lives, much of them in the closet, we had met and fallen in love in our mid-50's and had planned to spend the next 20-30 years together. 

Mark stared off into space, his whole world suddenly changed, as if everything had suddenly, abruptly, violently, gone out of focus. Which it had.

Did I mention I wanted to scream? Perhaps I did scream. I remember wailing as I called my daughter and my sister to tell them the news. It all seemed so grossly unfair. I haven't been able to write about it until now. But I think the time has come. 

The thought of losing Mark was devastating. I couldn't imagine being left to live out the last 20-30 years of my life alone. I thought of the past 20 months with Mark, and if ever I had had any doubts or regrets about the investment I had made in my relationship with him, those doubts and regrets vanished. I had followed my heart, and I had no regrets. None.

Prostate cancer typically spreads from the prostate to the bones. As we approached the scans Mark would take on the following Monday, we hoped for the best but feared the worst. Would they indicate that the cancer had spread? What would that mean?

After spending an entire day at LDS Hospital, after having gone over scans with radiologists and other specialists, there was hope that the two boney masses that had been discovered were benign. But a hastily arranged MRI confirmed that they were almost certainly cancerous. A biopsy could not be taken, and it was possible - just possible - that they were benign. We would have to wait a couple of months to be sure.

The next morning, we found ourselves sitting in a conference room at the Huntsman Cancer Center at Intermountain Medical Center - a hospital where Mark had worked countless hours in its emergency department as an ER physician. A series of doctors who had met that morning to go over Mark's tests came in to talk to us. The prostate could not be removed, or at least doing so would provide no benefit. Radiation was not an option at that point, but the radiologist who talked to us was quite optimistic that this might be an option further down the road. The consensus of the Tumor Board which had just met was that hormone therapy would provide the most hopeful treatment.

I had gone on a crash course within the past few days to learn as much as I possibly could about prostate cancer. I had learned that cancer is spread from the prostate by testosterone. The purpose of Mark's hormone therapy would be to kill his testosterone. Totally. He received an injection that very afternoon and was also put on oral medication that would finish off the job - and would continue to do that ... until the therapy failed.

This was of course devastating to Mark. To a man who had spent his life cycling, skiing, working out and being physically active, the prospect of losing the testosterone that fueled that activity was daunting. Then of course, there were the other side-effects, such as killing his libido. He would be, as Mark bitterly remarked on a number of occasions during those first days, chemically castrated.

We had no idea whether the hormone therapy would work. We would just have to wait and see whether Mark's body would react positively to the therapy, thus driving down his PSA. 

In the weeks ahead, we would learn that there would be much of waiting and seeing, of roller coasters of hope and despair, of questions left unanswered.

What we knew, now more than ever, is that we had each other.

************


As soon as Mark's full diagnosis came down, we were confronted with many decisions, not the least of which was whom do we tell and when do we tell them? There was Mark's family. My children. Friends. Colleagues.

Mark, as soon it was revealed that the cancer had spread to the bone, made the decision to retire from his emergency physician work. That necessitated telling people the reason for this decision. Mark hated to be the center of attention, but was comforted as words of encouragement, love and support came in from his colleagues and friends.

Then, he had to face the decision of when and how to tell his siblings and his mother. I'll leave that story for another post.

Our first inclination was to not tell the Quads, our (my) four younger children who range in age from 10 to 6. I felt it would be best to keep it from them as long as possible because they had already been through so many changes in their lives. They had come to love Mark and look upon him as a second dad. (In fact, Levi (my eight year old) had started referring to us as "J-Dad" and "M-Dad.") The thought of telling them that Mark has cancer and what that meant, this terrified me.

But when I talked to my counselor about this, she suggested that we tell them sooner rather than later, the rationale being that it would be better for them to have the knowledge now and feel like they had some sense of control.

I wrote about my feelings in my journal toward the end of April:
"During the past two and a half years, it feels like I have gone from one closet to another - the gay closet, the Invictus Pilgrim closet [my blogging persona that I created in the blog I started when I came out], the Mark closet (in the initial stages of our relationship), the resignation from the LDS Church closet (when I felt I had to keep my resignation a secret), the divorce closet, my other blogs' closets, my financial situation closet, my 'fear of my children's reaction' closet, and now most recently, the cancer closet. 
"In each case, I was afraid of being open for fear of what people would think. And in each case, as I was afraid of being open, I was afraid of being myself, as if my 'real' self behind all the secrets didn't deserve to come out into the full light of day and of disclosure. 
"I think what I have found these past few weeks is that cancer changes everything. Mark and I are much more openly affectionate in public than we would ever have allowed ourselves to be before the diagnosis. It's like, 'Why do we care what people think?' And in ways that I cannot fully articulate, I think I have become more accepting of myself.   
"Cynthia [my counselor] told me that she imagines that Mark and I have drawn closer together, which is true. We are more in love now than we have ever been, and I see us drawing even closer and closer as time goes by. 
"I guess one way of expressing what I'm feeling right now is that another layer is being peeled off the old me and I am becoming more a person, rather than a cipher, an actor on a stage who is going through the motions ... I had a realization yesterday that, because I never trusted or valued my own convictions (because I was afraid of what people thought of me), I never developed a strong sense of self. Living in various types of closets makes one hollow inside. I am continuing to learn to love myself, affirm myself and to appreciate who I am."
Stripping away is one of the side-effects of cancer. There is no time to live in closets in anymore - of any kind. So, perversely, another side-effect of cancer is healing.

4 comments:

  1. So sorry, having lost my wife to cancer I know it's terrifying. Cherish every moment and stay positive

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  2. Thank you. I know something of your journey. Thanks for your best wishes and counsel. They are appreciated.

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  3. Joseph, Martin asked me to read this as I knew nothing about Mark's diagnosis until tonight. I am so sorry you are having to go through this. I lost my father to prostate cancer; but he had the very aggressive kind. The doctors (early on in the treatment here in Jackson) committed some really dumb blunders that was very unhelpful to dad. That was back in the mid-80's. He got help from the medical community in California and on the East Coast but the research was in its infancy then. His cancer had moved from his prostate to his bladder which was really difficult and he had several surgeries but like I said they really didn't have the knowledge they have now. He passed on in the early 90's.

    The research and treatment of prostate cancer has come a long way since then. Mark has a lot of help and support that they did not have back in the 1990's that can really be amazing and offer a great deal of hope. Prostate cancer is not all that unlike what women experience when they have breast cancer. Many of the same genetic markers are also there in both prostate and breast cancer. Both are often treated hormonally now too. I'm sure Mark has provided his family history and if there are any cases of cancer (among either men and/or women on both sides). There are many factors and no cases are exactly alike.

    Also there is gene therapy that can be promising in some cases. My sister-in-law had an aggressive form of breast cancer and her cancer has been in remission for over 6 years now. She has to take medicine but it has been highly effective in shutting off the defective gene. Huntsman's an amazing place and Mark will get top notch support.

    Please keep us posted Joseph. Martin and I are with you and our thoughts and prayers go out to you and Mark daily.

    Love,

    Benjamin Clark

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  4. Thanks so much, Benjamin. The hormone therapy seems to be working well at this point. We have our fingers crossed that it will continue to work for a long time to come. Meantime, thanks for your love and concern, both you and Martin. It is much appreciated.

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