A Personal Journey with Cancer

Pre-Operative Perspective of a Spouse From Steve's husband Todd  - January 6, 2008

 

Tomorrow Steve has his surgery. While I’m a bit anxious, knowing what “the plan” is and that this will soon be behind us helps a great deal. I thought I would share some of what I’ve been experiencing over the past few months prompted by Steve’s cancer.

 

1) The “rollercoaster” – It started with a phone call to my office in October in the middle of the day. “They want to do a biopsy.” And off we go! I lost my mother to lung cancer 15 years ago when she was 65. When she was finally diagnosed (no need for a chest X-ray since she was never a smoker!), my mother was already Stage IV with an inoperable tumor and small cells throughout her system. She died four months later. So I had ridden the rollercoaster before, and it was not a ride I wanted to go on again. The waiting period with Steve for his diagnosis and the quest for more information began. As someone who works in hospital administration, I was aware that the PSA test often led to false positives in elevated values. The next few weeks we had lots of ups and downs – but these were more mood swings of anxiety, depression, anger, and avoidance while we waited for data. The fact that Steve had some bloody complications from the biopsy did not help either of us. I hope some day in the future with improvements in diagnostic imaging we will look back at the crudeness of biopsies like we do at certain medieval surgical procedures. Steve and I were driving back together from a conference he had in Washington, DC when the time came for the biopsy results to be available. This had seemed like an eternity to wait for. Steve phoned the nurse, and the report was “unremarkable” – a term you usually don’t like to hear about reports, unless it happens to be about cancer. This was good news. As part of their protocol, they went ahead and sent the slides to be re-read at Johns Hopkins, the Mecca of urological pathology. But we could relax, so we took at detour to Manhattan and celebrated with a nice lunch. A few days later it was Steve’s follow-up appointment with the urologist. There was no need for me to be there because we’d already gotten the news. Later the phone rang again in my office. “I have cancer. Johns Hopkins found cancer!” And, off we go again on the cancer rollercoaster; again the anxiety, the depression, the anger, the avoidance; time for more information. After the research, the decision was made – Steve would have a robotic radical prostatectomy (described elsewhere in this blog). I accompanied Steve to Brigham & Women’s Hospital in Boston to meet with the surgeon. He had looked over all the records that had been forwarded and started off by saying that there were conflicting reports – was it cancer or pre-cancerous? He was inclined not to operate but to wait another 3-6 months and then do another biopsy. The rollercoaster lurched forward again – wasn’t expecting that curve! After we talked more fully with the surgeon about it, and as he examined more of the information, he decided to proceed with scheduling the surgery, but he would check one more time with Johns Hopkins to clarify the pathology report. Now the anxiety and uncertainty of the rollercoaster was leading me to wish this were cancer so that it could be removed. In fact, after a few more days of waiting, we got the confirming report – yup, it really was cancer – full speed ahead.

 

2) “It’s not lung cancer!” – One of the other issues I’ve wrestled with over this period is how to put Steve’s cancer into perspective. Initially, based on my non-clinical hospital experience, my understanding of prostate cancer was that it’s something a lot of older men die with but do not die of. Unfortunately, in retrospect, that made me minimize Steve’s experience, knowing that this wasn’t going to be the four-month decline I went through with my mother’s advanced lung cancer. While this gave me hope, I don’t think the comparisons helped me support Steve very well. I started to recognize this as I shared news about Steve with others and the responses back sometimes were fairly brief comments about prostate cancer as a non-event – “Don’t worry about it!” Well, cancer is cancer! Please don’t minimize or dismiss it. I think the most helpful response I got that did put this in perspective for me was from the medical director at the hospital where I work. When I told him about Steve he said, “It’s a cancer with a surgical cure.” That didn’t reduce it to a non-event but very clearly framed the next steps with expectation.

 

3) Use your resources – Steve and I are both lucky to have colleagues we can share our lives with and who have been so supportive. This blog is an example of how the Goddard community has come together to support Steve. I similarly asked for help from a woman I work with at my hospital in Physician Relations. What are the best technologies? Where are the best hospitals? Who are the best doctors? She returned with an Internet download that introduced us to Dr. Hu at Brigham & Women’s, the surgeon Steve will be with tomorrow. Don’t be afraid to ask your colleagues for help when you need it.

 

4) Put the supports in place – As we looked ahead to the surgery date and considered the stresses and communication challenges already experienced within our family, it was important that we move ahead with counseling for all of us. I’ve not spent much time in therapy – other than living with a psychologist for almost 20 years. This was a new experience for me to have someone (other than Steve) who I could work with through the anxiety I’m living with, to learn new ways to manage my stress and anger. We also initiated family therapy for the boys. To use words from my therapist, this is one of the unexpected “gifts” of the cancer (sounds like a therapist, doesn’t it!) I agree and, in fact, have many gifts still in my mind from my experience with my mother’s cancer 15 years ago. The other area for support has been from the community-at-large. Our mailbox has been overflowing with cards and well wishes and prayers. Thank you, too, visitors to this blog. This support makes a difference!

 

5) What about me? – The last area I’ve been struggling with is the general lack of information directed at or recognition of the issues relating to the partners of gay men with prostate cancer. With most diseases and conditions, there’s so much information and support just a click away. We found some great resources and support on-line, including for gay men, but not much for their spouses or partners. I’ve read the literature (all of two articles, unless I missed something!) You graduate students out there, please consider this a possible research topic. While I’m not facing the same anxieties that Steve is with “going under the knife” tomorrow, I am anxious about the after-effects. Steve has already spoken quite openly in this blog about this. Let’s face it – the prostate is a funny organ. Impotence and incontinence are possibilities – short-term for sure, long-term hopefully not but we just don’t know. I feel guilty that I’m concerned about the impact on our sex life when Steve’s the one actually suffering physically (yes, I know, more for my therapist!) I raise this just to point out there’s not much help for us gay partners. Our issues are different from the patients and also different from heterosexual wives. Thanks for the opportunity to share…we’ll let you know how things are going.

 

-- Todd




Trackbacks

Trackback: http://www.goddard.edu/blog/trackback_receive.php/id/1534