I found out last week that my former boss died after being diagnosed with cancer two months ago. He married his long-time partner 10 days before he died.

I’ve read that when a cancer patient dies within the first six months, it’s like a sudden death in that the family has not had time to adjust to the illness, to the possibility of losing this person, to a future without this loved one. When the illness lasts beyond 18 months the family becomes weighted down by the effects of on-going anticipatory grief and the effects of living, long-term, with terminal illness.

As both a therapist and a lawyer I tend to both eschew broad, sweeping statements yet be fascinated by statistics and data. I know that not all cancers are alike, not all cancer families are alike and many cancer families are more like families who have survived other traumas and illness. As a good lawyer I know the answer is always: it depends.

But we were definitely feeling the effects of living long-term with terminal illness. We were coming up on 12 months and I was definitely feeling the effect of the anticipatory grief and the effects of living, for so long, with terminal illness. I told a friend that I felt guilty that I was, on some level, relieved that I did not have to declare bankruptcy after all.

I loved Michael and didn’t want to lose him and was prepared to go into bankruptcy or give up everything I own for him to continue living and have his caregiver here but if I want to be honest, I was starting to buckle under the pressure.

I never wanted to think about the burden of it all because the alternative was not having him around and I wanted him around at all costs, but it was truly going to be a complete financial horror show by September/October and I was feeling increasingly isolated and without options. When Michael was well we were pretty committed to having flexible schedules…nothing really happened at the same time, same day….except for Saturday night movies. But since he became sick I was very limited in what I could do. Which was okay because I could not be away from him for extended lengths of time without feeling visibly anxious and upset and needing to get right back to him.

But now and again the inability to get up and go to the gym at 5 am or 7 pm or meet a friend for dinner or anything like that would cross my mind. Not often but in the last few months i seemed to notice it more while at the same time being committed to going out less and less. I felt comfort being at home with him. When I was outside I would just worry. I would time how long it would take me to get home if I was out somewhere. Sometimes I would start to panic when I got too far.

And I wanted to make sure I always kept a warm and loving thought toward him so I was very cognizant of the fact that him being there and well cared for (by me and his caregiver) was the number one concern. So my financial and logistical concerns were in a very distant back seat somewhere.

I was researching bankruptcy (the laws, the rules, the effects) the week before he died and when I realized I didn’t have to declare bankruptcy, I was very relieved and felt guilty about that relief.

As devastating as his death was I couldn’t live with cancer another 9 months without losing just about everything (including my mind). It’s the disease that I hate. I wish he was still here but am somewhat relieved that the burden of the cancer is gone. I found one of his syringes last night and recoiled when I opened the drawer and saw it. I thought I had thrown all of that away.

Michael died 11 months and 1 day after his seizure. So in that almost-year, we celebrated everything one more time. All the kids and grandkids’ birthdays. Our anniversary. One more Thanksgiving, one more Christmas, one more Easter and Mother’s Day and Father’s Day. And his birthday. And he got to see Keira who was born in February and looks just like him.

My concern was that he wouldn’t make Gina’s birthday on August 7th. He was very shaky the week before her birthday and I secretly begged him, in my head, to not die on her birthday. She was going away the next week for a well-needed rest with her brothers and I also secretly begged that he not die that week when the kids were having a much-needed and much-deserved respite.

He died the day they came back. But the cycle of the family was complete for that year. We had celebrated everything one more time. And when it was all done, Michael left the world.

Cancer is a devastating illness and living with it and its effects is a horrible experience. I’m grateful Michael had one more of everything even if for some of them he was very sleepy or having a down day He had a lot of good days to share in the year. I know that not everyone does. He got to stay at home and die at home. Not everyone does.

But part of me still understands, as much of the world does not, that the aftermath of a cancer battle is still excruciating and horrible. I think that a lot of people thought I “should” have been prepared or I “should” have grieved a lot of this already. I had such a tussle with acceptance (and still do) that I’m not sure I spent a lot of time in phase 2 of grief. I was just screaming against reality for much of the time while trying to take care of him the best I could.

Not every family has to deal with a bed-ridden and incontinent patient as we did. But many have to deal with tubes and injections. Many cannot keep them home as we did. I understand and am grateful for Michael being in a loving environment for most of his illness. I hated any inconvenience or discomfort he had to suffer. He was stoic and brave and admirable. His quiet dignity was an example to the rest of us.

During Michael’s illness I had to have people here all the time. In the beginning I hated them all. The caregivers, the hospice workers. Not them—but their presence in what had been a very private life and a very private residence. People were in and out all the time. Michael was the center of attention but I had to talk to everyone. There were supplies everywhere, meds, oxygen tanks, pads and diapers and every ointment and powder under the sun. There was stuff everywhere and people here all the time.

In January I hated it all. But then it was gone. Just like that. In the blink of an eye. The night of Michael’s seizure, life changed drastically. Then the night of his death, 11 months later, it changed again….in the aftermath of any death is a great deal of activity, planning the services, receiving cards and baskets, talking to each other a lot. The activity present during the illness is still there.

Then….nothing. NOTHING. It all goes away. The people, the things to do, the well-wishes. The baskets, the flowers, everything. It just comes to a complete halt. After a year of living with devastating trauma and whirlwind activity there was NOTHING.

I don’t know why. Even in a family such as mine that knows about grief and where we have been committed to each other, everyone seems somewhat anxious to just go back to life as it was before. I think the kids were burnt out and needed a rest. They are young with young families and want things to be “normal” again. My grandson can finally join soccer, my son can work on his house, my other son can kick back and relax.

But here things are not normal. And the silence is deafening.

Because our family is pretty open with each other, I had to say something but I know the kids are not used to me being the one needing anything. So, I asked my sons if they were avoiding the house or me because of the memories of the illness and death and my youngest son wrote me this letter.

Mom, Trust me, we all care about you and are conscious of what you are going through. I am not sure what it is. I guess I am use to talking to you through email during the week and seeing you when I go up there. When Mike was sick, I obviously went up there to see him, but I also went up there just as much to be with you. I fully intended and fully intend on going up to be with you just as much. I only didnt in September because I had two weddings and a going away party for a friend going to Afghanistan 3 weekends in a row.

Mom, I know(somewhat) what you are going through. But like you said before, none of us will ever understand fully what you are going through and for me, I don’t know what to say. I like to think that when I see you I help to somewhat distract you from the reality of what you are going through.

I’m sorry, Mom. I want to be there for you and don’t want you to feel like you and Gina are all alone. I think the problem is I don’t know how. I don’t know what to say or what to do and I know no matter what it is it won’t make you feel a whole lot better. Without sounding too much like someone who doesn’t know that love is what you DO, I do think about you guys everyday. I will call more. Email probably shouldn’t be our only means of contact during the week anyway. No matter how busy my life is, it will never be too busy to make time for you. You have been there for us our whole lives and I should be there for you, no matter if I know what to do or say or not.

I Love You

I guess we are all still learning.

As a therapist and a lawyer I know there are families with labels after deaths. A traumatic death in a family changes everything. I have had clients as both a therapist and a lawyer where there have been horrendous accidents, murders, suicides…terrible things.

And not all cancer families are the same but I think there is some adjustment in the aftermath of a devastating illness. There are so many considerations during and after it can feel like, “Okay. What?”

And like all cancer families, we are adjusting to life after our loved one’s death and life after dealing with the horrible disease that is cancer..

We will adjust. We will.