NET cancer memories

I usually update this site every day. I either add a link to some new piece of information about NET cancer or write a blog post about Walking with Jane or my reaction to the latest bit of research or my feelings about the struggles everyone involved with this disease faces.

I don’t want anyone to go through what Jane did…

But for almost two weeks I have done none of these things. For reasons I do not entirely understand I am suddenly reliving everything about Jane’s last days fighting NET cancer and the carcinoid attacks it spawned as she tried to recover from heart surgery to replace the valves in the right side of her heart that the excess serotonin had destroyed. Those memories have left me too beaten to face anything more complicated than a relatively upbeat novel–and sometimes even that has been beyond me.

In fact, even writing this today is proving a struggle.

Jane’s last NET cancer battles

December 10 I will face the second anniversary of Jane’s death. Eight days ago was her birthday–and the second anniversary of what we now know was the first in the series of carcinoid attacks that eventually would kill her. Ten days ago was the second anniversary of the heart surgery that lasted four hours longer than expected because the damage the serotonin had done to her heart was so much worse than we had expected.

There is no cure for NET cancer right now unless…

But today was a bright spot. It was Thanksgiving Day and–after a night that was touch-and-go for a while–so touch-and-go that they found another room for me to sleep–Jane had greeted me with a big, “I love you hubby” that washed all the darkness and foreboding out of me. We arranged for her father, sister, cousin and two friends to come visit for a couple of hours. Then we shared Thanksgiving Dinner: a cup of chicken broth for her and a bowel of pumpkin soup for me.

It was the best Thanksgiving we ever had.

Two days later, she was in a coma again–and again I had to decide whether to let her go or not.

NET cancer decision points

You do not know what that is like if you have not had to do it. TV shows make it look easy. So do movies. Reality is something else entirely. It was a decision I had to make three times. It weighs on me even now–even having concluded logically that in each case I made the right decision given what I knew at the time–what all of us knew at the time.

But I wish none of it had happened.

This is how little we knew at the time: On December 10, as I held Jane’s hand and waited for her to die, her doctor told me that Jane’s case had essentially doubled what we knew about NET cancer and carcinoid syndrome. Among the things we did not know was that every time Jane started to rehab her heart the exercises triggered a new carcinoid attack. The tumors in her liver flooded her body with serotonin that crashed her blood pressure and her respiratory system.

If we had known that, she would have died November 22. I would not have put her through the emotional roller-coaster of the remaining 18 days of her life. But I did not know–and she did not know–none of us knew.

One NET cancer’s impact

There was much that came out of those 18 days that was good for our knowledge of NET cancer and for the lives of the people Jane came in contact with. Jen Chan, her oncologist, sent me a note this week. “I recall Thanksgiving-time two years ago with you and Jane as if it was just the other day,” she said. I think about all the patients she has had since Jane and know the impact my wife had on Jen was anything but small.

One of her nurses sends me a card a couple of times a year, and I know that many of those remember her well. I ran into her heart surgeon a few months ago–a man who does 2-3 heart surgeries a day–and he, too, remembered Jane’s battle.

You do not know what that is like if you have not had to do it.

I think about all the work Walking with Jane has helped to finance and–at times–inspire, and know that has not been a small thing either.

But I wish none of it had happened.

NET cancer reality

So here is the hard truth–the truth no patient or caregiver wants to hear or deal with.

There is no cure for NET cancer right now unless we catch it really early. There are some hopeful things on the horizon, but at this point that is all they are.

It was the best Thanksgiving we ever had.

That means that many of you are going to face what Jane and I did. We were lucky in that we had talked about end-of-life issues. We thought we knew what we were looking at. But we were wrong.

We think of death as a black-and-white issue. We think of DNRs as black-and-white as well.

They aren’t. They are a thousand shades of every color in the rainbow–and you cannot hope to anticipate all of them.

NET cancer and the end

Have the conversation anyway. You need to have as good an understanding of where the lines are as you can.

 I am suddenly reliving everything about Jane’s last days…

But, in the end, if you are the primary caregiver, you are going to be alone in a room full of people who are waiting for you to make a decision about whether or not your spouse goes on living or dies. And even when it is clear-cut–as it was for me on December 9–it will likely be the most emotionally wrenching decision you will ever make.

If you want to know why I spend my days trying to kill NET cancer, this is it: I don’t want anyone to go through what Jane did–or what I did–at least not about NET cancer.