Trying to find a brave face to wear

Everybody tells me I need to be strong. In addition to that, I also have to overcome both the greatest fear I’ve ever faced as well as my natural tendencies toward pessimism.

We met with the oncologist today about my husband’s cancer. The part that makes it hard to be optimistic: he didn’t really have any good news. My husband actually has rectal cancer rather than colon cancer, which has a worse prognosis in general.

The only good news was the advice I got from a friend who just finished her doctoral degree in nursing practice and used to work in oncology. She said the fact that the oncologist recommended chemo and radiation means there’s hope. It’s not so bad that they just put him on palliative care. And she said that younger patients such as my husband tend to respond to treatment better than older ones.

But here’s what is bad. It took so long to get an answer about staging from pathology because the case is so complex. After the surgery last week, he is not cancer-free. 15 of the 25 surrounding lymph nodes they removed were positive for cancer.

He starts chemo in a couple weeks, along with radiation. Then he’ll have scans to see if he has more cancer and may have surgery. Then six more months of chemo.

The treatment is going to take most of the rest of the year. We’re already in the process of trying to find a new normal and I imagine it’s only going to get more strange once he starts chemo. I wish more than anything that I could turn back the clock to the time before he got sick so we could have somehow prevented it. I already miss the old normal.

Oh, the other bad news. The oncologist said his prognosis was “guarded.” (My doctor friend said that isn’t good.) The oncologist also said that it’s the worst case of cancer he’s personally seen in a couple years.

It’s so hard to write those sentences and still feel like I can breathe.

The last part, about his prognosis being guarded and the oncologist saying it was the worst case he’d seen in a couple years, is the part we’re not talking about openly. We’re not telling the kids nor our families.

Keeping that a secret feels really bad in itself, like they’re such bad facts that we have to pretend they’re not real. As a person who thinks secrets are toxic, I hate that. I probably need to go to therapy to learn how to cope with that.

I’m reading about survival rates and life with cancer and I realize I can’t give up, no matter the odds. It is my goal to be positive and to be a cheerleader for him (a role that doesn’t come easily to me.)

But I just need this moment to express the fear. The past week and a half has been tough and I held it together pretty well, but now I can’t stop crying.

I don’t want to lose him and there’s a real chance I might. Not yet. He’s too young. If this is the end, I don’t want it to be time with him feeling sick and exhausted from chemo. I want to hold on to the happy memories.

I’m putting my grad school plans on hold to take care of him and the household. I think I’d be too distracted to do well but I don’t know when I will pursue it otherwise. Right now it seems unimportant, yet it could become really important.

On the one hand, I have disability. In the meantime, that will help me support him, because I definitely have to put running the household and helping him at the forefront. I think that will take me to my limits as it is and I don’t think I could do anything more.

On the other hand, if I lose my husband, my disability payments will not be enough to support myself. If he can continue working but ultimately loses his fight, I’d get life insurance. But if he has to quit (or they don’t let him keep working), that’s in jeopardy.

I don’t want to think about what happens if he doesn’t make it. But it’s also naive not to do so. At the same time, I need to not neglect my own health and risk an MS relapse. Right now, taking care of myself seems selfish.

Right now, I can’t imagine what life after chemo looks like. I just know that the next several months are going to be hard and I have to believe there will be something good at the end.

I just don’t want this to be the end. Not yet. Even though we’ve had 25 years together, it doesn’t feel like nearly enough.

He’s my best friend. He’s irreplaceable to me. Losing him would be like losing a limb.

So for the meantime, I’m going to ignore the survival rate statistics. He’s not a statistic, he’s a person. Statistics are just numbers. I’m not going to think about “what ifs” and contingency plans yet. It’s too scary and it’s not there yet. If I ever needed to break my tendencies toward catastrophizing, it’s now.

I’ve experienced so many miracles in my life. Can I please get just one more, the biggest one I’ve ever asked for? I need to have hope that he can beat the odds. Because the alternative is more than I can bear to think about.