Scroll forward eight years …. years filled with all the emotion of raising a bright, beautiful young daughter. It was her – always her – that kept us grounded; that kept us moving forward; that filled our lives with joy and pride and brought us to our knees in prayers for her health and happiness. We were so focused on her that we forgot to pay much attention to ourselves. Oops.
The next change started out slowly. While I cannot remember the exact date when we took that first trip to the hospital, I do remember being scared, so very scared. My big strong husband was a quiet man but that night he was not just quiet – he was still. He was stretched out on the couch, his hand on his heart. He called me over, ever so quietly, and told me that he needed me to drive him to the hospital. I tried to ask questions but he waved me away. In hindsight, it seems odd that it never even occurred to me to call an ambulance. He wanted to get in the car and go to the hospital. So off we went. Our daughter was at a friend’s house. Before leaving, I called the friend’s parents and asked them to hold onto her until I knew what was going on.
He wouldn’t talk. He just sat quietly, staring ahead, wincing every time I hit a bump in the road. Our local hospital is only about twenty minutes away from our house but it seemed an eternity to get there. But we did get there and he was taken right into the emergency room. The medical professionals were not fooling around. We all thought he was having a heart attack.
But it wasn’t a heart attack – it was angina. And this wasn’t the last time I would go through this particular drama. It happened over and over again until the doctors finally got the meds right and Joe learned to manage his anxiety. The late night trips to the hospital finally stopped. I thought we were in the clear. HA!
Prostate-Specific Antigen (PSA) tests were the next up on the “change” list. I didn’t even know what PSA was when Joe told me that the results of his last test were higher than normal. I didn’t get “it.” Of course, the “it” being prostate cancer. But he didn’t seem too concerned so neither was I – at first. There were a lot of tests and a lot of doctors and a lot of options. Had his levels been the test results for a younger man, or a man without a family history wrought with cancer, the doctors might well have just kept an eye on him and his future tests. But he was 61 years old and cancer was his family scourge. It had spread through his family wiping them out, one by one, like the bubonic plague in medieval Europe. Mention cancer to anybody in my husband’s family and watch the color drain from their face. It had touched them all. And we were not exempt.
Prostate cancer is one of the most common forms of cancer in men but it seems to lack the recognition of other, better “publicized” cancers. Joe’s oncologist brought this to my attention. He is very involved in a movement to bring more attention to this form of cancer. He hopes that someday prostate cancer will come out of the closet – as breast cancer did for women. It’s probably hard to remember, but there was a time when breast cancer was not a topic for polite conversation. One can only wonder how many lives were lost due to failure of early detection. Now, there are entire marketing campaigns with major corporate backers promoting breast cancer awareness. Actresses like Angelina Jolie speak openly about their diagnosis and subsequent treatments. We wear pink ribbons and walk long miles to promote breast cancer awareness and raise funds for research. Prostate cancer researchers and oncologists hope the same will be true for them …. someday soon.
Joe’s cancer was detected early, He was very religious about his health care. See “Change, Change, Change, Part One.” After losing his dad and his brother, he wanted to make sure he did everything possible to prolong his own life. As far as his treatment, ultimately it was his decision and he chose robotic surgery. His doctors were using DaVinci surgery, billed as a minimally invasive procedure with a high success rate and a quick recovery time. It sounded like the right decision. We explained the situation to our (then) 16 year old daughter. She did what only she would think to do – she did research and wrote a paper on it!
Now I know that sounds particularly geeky but you have to know this kid. She is very much like her dad – a pragmatist, practical to a fault. I rather like this as it balances my uber-emotional nature quite nicely. So, while the kid typed, and the husband packed, I prayed. She didn’t want to come to the hospital. “Just text me when he’s all done, Mom.” I couldn’t get over her stoicism.
Well, while he was in surgery I received a call from her school. Little Miss Stoic was falling apart. Whew … she was my kid after all! She needed to be with us. A friend ran over and brought her to me. We waited, together, and watched as families in the same waiting area of the Medical Center were given the news of their loved ones. It was so odd in this day of HIPAA regulations that doctors were coming out to a public area and delivering what was, at least in one case, horrible news. With each delivery we became more concerned. It was taking too long. Where the hell was Joe?
Finally, word came out. He was fine. The surgery was a “massive success” and he was on his way to recovery. The delay had not been with his surgery but with scheduling. Gosh, wouldn’t that have been nice to know? Anyway, we were finally able to see him and, assured that he was going to be in a room soon, we left the Medical Center.
The next day I returned to retrieve him and bring him home. He was absolutely miserable. The kid who shared his room was there as he had been in a drunk driving incident. Another kid was killed. Joe’s roommate had been driving. It was horrible. I couldn’t get him out of there fast enough.
Joe’s recovery was not quite as fast as we had been lead to believe. Like any operation, there are possible side-effects. He struggled with many of them but fought to get back to work and back to work he went. The doctors seemed pleased and, again, I thought we were back on track and the worst was behind us. HA!
As part of his recovery, Joe had to regularly return for more tests. One of those tests being my old friend, the PSA. Now, as I don’t have ANY medical training I might be missing some of the fine points but as I understand it, when a man’s prostate is removed, the PSA should be zero. Makes sense to me. No prostate should mean no prostate cancer. Sounds right, doesn’t it? Then why the heck was Joe’s PSA going up? WHAT THE HECK? It was just not supposed to be. The numbers had to be wrong.
The numbers were small, so small they would have been insignificant except that they should have been zero. Anything more than zero was an indication that something wasn’t right. Back to the oncologist we went. He talked to Joe about a clinical study that he, the doctor, thought Joe was a good candidate for. Note to readers — if you are ever given an opportunity to be in something called a “clinical study,” run, do not walk, in the opposite direction. Run, run, run, as fast as you can.
Why? I think that freaking clinical study killed my husband. Of course, before starting the study he had to read and sign reams and reams of legal papers which included, of course, the risks and absolved the doctors and the company financing the study of all liability. I am sitting here, typing, shaking my head. How could we be so stupid? How could we not have known that there is a reason they have you sign all those forms? How? Because we couldn’t believe the oncologist, the doctor we liked so much and had come to trust and believe would recommend anything that could hurt him. Honestly, when I am not being angry, I still like the doctor and really think he was just as shocked by Joe’s death. None of us saw it coming.
Joe seemed fine. He was taking the meds. He was preparing for his retirement. The numbers were going down. The meds seemed to be working but then things got a little strange. Joe started getting pains in his legs and arms that couldn’t be explained. I didn’t like it. I went to the doctor with him. I specifically voiced my concern about blood clots (fine print in one of the documents that I did remember). They checked but no clots were detected. Oh well, la di dah … no worries. Ha!
The big change started on Sunday, October 16, 2011. Joe had been retired for a month. He had received his first pension check. His stress level was zero (as was his PSA). That day he had his monthly duties as a cook at our church pancake breakfast. He was on his feet flipping pancakes for hours. My daughter, now a senior in high school, and I were going to our last Mother/Daughter event for her school. It was a beautiful day. The same kind of blue skies as on 9/11. Crystal clear. All was well with the world on such a beautiful autumn day in upstate New York.
When we got home, Joe was resting. He said he was tired from all the work in the church kitchen. Nobody paid much attention. My daughter went on about her business as did I. Little did we know if would be our last night together. Dammit.
The next morning, Monday, October 17, 2011, I woke up and Joe wasn’t in his usual space in the bed beside me. I walked out of our bedroom and found him on the couch in the living room. He said he was having trouble sleeping so rather than wake me he relocated. Most unusual but I was busy getting ready and our daughter was busy getting ready so we said goodbye and went on our way. We were car pooling so we left together. I don’t know why that’s significant but in my mind, and in my telling of this story, it is. We left together. He was alone.
I was only at work for about an hour when he called. As documented in another post, our last conversation was absurdly pedestrian. Canned goods sale at the local market was the primary topic. The next call I received, about two hours later, was from a 9-1-1 operator. “We have your husband on the phone. He is having trouble breathing. An ambulance is on the way.” I flew out of the office.
Joe didn’t make it. His heart, his incredible large giving, caring heart had failed him. He tried so hard to make sure he would be there for me and for our daughter. He took chances that he thought would ensure a long life. He tried to do all the right things. But it wasn’t to be. Our Joe was gone. Gone. A little more than two years later and I still struggle with that reality.
Change? Oh yeah, big change. Big, freaking, unexpected nightmare of a change.
I think there is going to have to be a Part Three to this story. The change did not end with Joe’s death – there is so much more. But not tonight. Later …..