Still Standing

Hello, friends.

Thank you for your kind comments and for continuing to check in here.

I also want you to know that I read many of your blog posts and am thankful for both the distraction and the chance to keep up with your lives.

I want to tell you more about my husband's illness and death, and how things have been since then. There is a purpose to this beyond bringing you up to date. You will see what it is by the end of the post.

For a few weeks after my husband's death, I ran on adrenaline. I had deadlines at work, I had bills to pay, and I had a lot of paperwork to do. The paperwork was overwhelming and I was fortunate to have my brother's help in prioritizing it and making a plan to get it done. Everything that seemed like it should be straightforward, wasn't. Everything that seemed like it should happen quickly, didn't. It was exhausting thinking about it and then it was exhausting making the phone calls and writing the emails and mailing forms and documents away. Finally, it was exhausting not knowing how long it would take to hear if problems had been resolved.

After that initial frenzy of work and paperwork came a lull. Suddenly it felt like all the energy had been sucked out of me. I continued to work because the concentration my job requires gave me some daily mental relief from the sadness and grief. Many days I felt like I could barely take the steps it required to get out the door. And when I left work to come home, I wouldn't get more than a few steps out that door before reality, and the accompanying pain, came into full focus again. I felt broken, and I wondered if I would ever feel any different. Even with the support of my family, friends, and neighbours, it felt like I couldn't get rid of the massive boulder that seemed to sit on my chest. I was never far from tears, and I was lousy company. The scenes from the past year, and especially that last month, played over and over in my head when I had time to think and nothing to distract me. The grief over how he suffered and died was as bad as the grief over losing him.

Cancer is a horrible disease. Esophageal cancer may be one of the worse forms. I don't know - I haven't had much experience with other ones. What I do know is that my husband wasted away from a robust person to a skeleton in a matter of months. His last month was horrifying beyond anything I had expected. With the help of the local palliative care team, I was able to look after him at home. It was what he and I both wanted, and I am thankful I could do that for him, because there was nothing else I could do.

He went through so much pain before he was even diagnosed. He didn't get the pain treatment he needed until he was admitted to the palliative care program three months before his death. For the last month, I was shown how to give him injections of powerful medications through a subcutaneous line, but as quickly as his dosages were increased his pain and breathlessness increased too. It felt like we were always chasing the symptoms and rarely catching up. For his last couple of weeks he required medications every sixty to ninety minutes, day and night. Fortunately, palliative care also provided some respite time for me to sleep. They also tried to assure me that I was doing as much for him at home as would have been done if he had gone into the palliative care unit in the hospital. But that didn't help his suffering or my desperation and guilt.

If you're not familiar with esophageal cancer, you may be wondering why it wasn't caught sooner. The problem is that it doesn't produce clear symptoms until it reaches an advanced stage.

Fatigue is an early symptom, but there are so many causes of fatigue. My husband had bloodwork done a year before his other symptoms started, because he had been feeling so tired. But nothing was found.

Indeed, even after his swallowing issues began, he was sent for more bloodwork and again nothing was found. Finally a CT scan was ordered, which took six weeks to happen, despite several followups and pleas by us. By then he could only tolerate liquids and had lost a lot of weight. He had a stent put in his esophagus to help him swallow, and started chemo, the mildest course available because he was so frail. Neither surgery nor radiation were options because of the advanced stage of the disease.

We were told by the chemo doctor that finding the cancer six weeks or six months or even six years earlier wouldn't have made a difference. I wonder about that that last part, and eventually I may ask my doctor if that's true or if the chemo doctor got carried away with his sixes. However, the fact that my husband was fatigued for so long prior to developing other symptoms leads me to believe that finding the cancer even two years earlier would probably not have changed the outcome. And I have spoken with folks who knew other people with the same kind of cancer. Even those whose cancer was found early enough that they could have surgery or radiation never went back to being healthy; instead, their treatment seemed to only prolong their discomfort and pain.

My husband was a long-time smoker, and we were told that's what caused his esophageal cancer. He had tried to quit a number of times, and succeeded a number of times. But he always went back to it as a way of dealing with stress. Some people would say, or at least think, that he deserved what happened. But I can tell you this: as much as I hated everything about the smoking, nobody deserves the kind of death he had.   

Smoking is just one of the risk factors for esophageal cancer. Obesity and long-term heartburn are the others. Smokers are often ostracized these days, but how many folks with obesity and heartburn do you know? Quite a few, I bet. You know one, at least - me. My heartburn is well-controlled but I've been taking strong medication for thirty years.And I tend to be a stress eater, which is no better than stress smoking.

The reason I have explained all of this is to try to encourage people to listen to their bodies and to be aware of the risk factors. My husband would have needed to really push his doctor to investigate his fatigue further when the initial blood tests came back negative, but that wasn't him. Many people are like him - unwilling to make a fuss or question the medical results. He was also a very stoic person. People, do not be stoic. If you feel something is wrong, keep pushing to find out what it could be. You know your body best; after all, you have lived in it your entire life.

This has been a long post. If you are still reading, thank you.

I hope to be back soon. Until then, take care of yourselves.