The courage to reach out

Cancer is lonely. That’s from my perspective as a spouse. I would assume that it’s even worse for the one who actually has cancer.

I spend a lot of time thinking; how can I not, especially since I work from home? I’m spending the summer driving the kids around a lot too which gives me a lot of time to think. But it doesn’t give me time to seek out real-life support groups.

Then I remembered my friend who just got married within the past year to a wonderful man, after having been in a bad marriage for years. Her new husband was diagnosed with cancer as well, a couple weeks after my husband was. We both sent each other messages saying we’re there if the other wants to talk. But like most things go, people get busy and those kinds of things go on the back burner.

So I finally reached out to her yesterday and she seemed so happy to have someone to talk to about it. She said that most people try to empathize but don’t really understand. And that’s true: it’s the kind of thing you really can’t understand until you go through it. I think I have created a two-person support group with my friend. I have another longtime friend who checks in on me a couple times a week, which touches me. But having someone who knows exactly what you’re experiencing is invaluable.

Cancer is like the club that nobody wants to join. All of a sudden, you’re plunged into this new world with chemo treatments and staging and oncologists and fears about catching a virus that will put the person you love most in the hospital. You second-guess what you eat for dinner and you change routines on a moment’s notice depending on what’s happening. You never know when you’ll have to shuffle your life around.

You think about death much differently when you’re in this cancer club. Suddenly something you thought would be for sure 40 years in the future is now something you can’t take for granted.

It’s terrifying in a way that nothing else is. But at the same time, it zeroes in your focus on the ones you love the most. Nothing else really matters. You still have to do all the usual day-to-day stuff and you try to keep life as normal as possible. Sometimes you even get breaks that feel normal, like we did this weekend.

But it also makes you look at life in a whole new way, and at your partner with fresh eyes. Suddenly they seem more precious than they did before and you really truly grasp how much of a gift it is to have them for another day. When you no longer assume you have all the time in the world, it makes you truly value what you have every day.

The magical thinking associated with illness

The hardest thing about having multiple sclerosis and my husband having colon cancer is sometimes not actually what we’re experiencing, but that everyone else has this magical thinking about serious illness. And of course, they want to share their magical thinking with you.

I found this article that offered a lot of insight into how the randomness associated with cancer makes people feel a loss of control. In response to that loss of control, they turn to things they can control, namely diet. So you get a lot of advice from people who insist that the way to beat cancer (or MS, for that matter) is through diet. Note that these usually aren’t people who actually have cancer themselves, they’re just afraid of it.

It’s true that some dietary changes are scientifically proven to be associated with better outcomes for colon cancer in particular, like regular consumption of tree nuts and lower insulin levels.

But overall, cancer is still ultimately random in who it affects, who recovers from it, and who dies from it. That’s absolutely terrifying to realize that you don’t have control over something that is affecting you so profoundly.

Multiple sclerosis is much the same. On the one hand, it can rarely kill you (but secondary infections due to treatment itself can), but on the other hand, it also has no cure. There’s some anecdotal evidence that diet can affect it but there’s no scientific agreement about it.

I’m admittedly bitter about dietary changes being presented as a cure-all because I place a lot of blame on that for my husband’s cancer going undetected for so long. Part of that delay was a combination of stereotypical male avoidance of doctors and expensive health insurance.

But the surgical oncologist who did his surgery said it looked like he had years of undiagnosed ulcerative colitis that turned into cancer. And during all those years when he was suffering, he just kept giving up more and more foods, buying into documentary woo about dietary cures. I blame myself for bringing a lot of that documentary woo into our house, since I wrote for the natural health industry for so long.

He largely gave up drinking milk in his teens and was a vegetarian for many years. He spent the past 10 years or so gluten-free. He pretty infrequently ate processed meat. By all accounts, although he did not have a perfect diet, it was free of most of the things the woo-sayers tell you to give up. And he still got cancer anyway.

The randomness of cancer is scary. In fact, that’s the aspect I still find scariest, since I’m a recovering control freak with anxiety that I’m learning to manage.

I was reading cancer forums in hopes of finding support but instead they freaked me out. I read about one person whose husband died of colon cancer (itself scary to read) who ended up also being diagnosed with it herself, which then made me worry about myself as well. Just because I have MS doesn’t mean I won’t get cancer, too.

But MS is also random. Will I be one of the people who loses some mobility but otherwise lives an okay life? Will I someday find some gainful employment I can do? Or will I be one of the ones who ends up in a nursing home in my fifties?

People are just as bad about telling people with MS that diet is the cure as they are to people with cancer. Yet in one of the groups I follow for people with MS, a woman just yesterday said that she followed a vegan, sugar-free, gluten-free diet for years and her MS still got worse anyway.

The randomness of illness sucks. There’s no other way to put it. You can and should do things to try to be healthy. Healthy habits never hurt. But there’s no guarantee that they’ll prevent anything from getting worse. That’s how randomness works.

I’m really, really tired of woo peddlers saying that an alkaline diet or apricot seeds will cure cancer or a low-fat diet will cure MS (or alternately, a low-carb, high-fat diet…not like low-fat and high-fat are complete opposites or anything.)

The hardest part of being sick is how little control you have over it. But when people insist that you do have control over it if you just do the right things, that skirts the line awfully close to blaming people for being sick.

Fear and why it can’t win

If the last time I wrote was the side of me that could see all the reasons to be grateful, now I’m feeling the fear creep back in.

My husband got his chemo port put in yesterday, which made everything all seem more real. Now in addition to the other limitations we already had, we can’t even easily hug or snuggle without having to worry about the port. I hope that will change as the port heals.

But between the port and the colostomy and the surgical scars from a month ago, it seems like there’s so much of him that I can’t touch anymore. It’s a hard adjustment for me and I know it’s harder for him.

It didn’t help that I’d had so little sleep before the surgery that I felt sick. It also didn’t help that it was at a different hospital than I’m used to, where a lot of things seemed pretty subpar.

I am trying so hard to stay optimistic and hopeful, both for his behalf and for mine. I’m usually focusing more on the likelihood that the chemo will cure him and the overall percentages than I am on the oncologist’s description of his prognosis as “guarded” or that my husband’s case is the worst that he’s seen in a couple years.

Most days, I’m really good at keeping things positive, keeping it in perspective. I’m a big believer in beating difficult odds. But the port placement was unexpectedly really hard on me.

At one time since the cancer discovery, my husband made some off-handed comment drawing parallels between him and Cammy, my beloved cat that we tried so hard to save. I’m pretty sure that what he meant was that he felt some empathy for what Cammy went through, since it’s likely that Cammy had undiagnosed cancer.

But in my worst and darkest moments, when I’m sobbing in the closet, I draw the same parallels in a different way.

Cammy went from seemingly fine (though looking back, we can now see subtle clues) to very sick, very fast. And he never got better. Once we took him to the emergency vet and he got a feeding tube, it was a rapid decline from there.

He got sick and then he got sicker and every day I felt more helpless, as I started to realize his premature death was inevitable.

This feels like that. I know a lot of it is that I am incredibly deficient on sleep and am working too much and barely staving off an MS relapse, so that makes everything feel worse.

But in moments like these, it feels like I’m on the same speeding rollercoaster to the death of one of my greatest loves. I don’t have much experience with death but what I do have has been pretty traumatic. It’s hard for my mind not to go there.

It’s been exactly a month since we got my husband’s diagnosis. Nothing has been the same since. Even though there were subtle clues, I miss the old “before cancer” days so much. I’m sure he misses them even more than I do, since he’s the one going through it.

But as he pointed out on our 25th anniversary this past week, sometimes it’s hard to tell where he ends and I begin. And I feel like the part that’s him has been cut off from me.

Because I’m worried and not sleeping well, I’m also getting sicker. My balance is declining and I’m walking worse, so now I’m using a cane. That increases my fear about myself. Then I feel ashamed of being sick, because I need to be helping him. I need to not be sick. If I didn’t have MS, I would be able to take over all the things for him and get less sleep and be just fine.

He officially starts his chemo next week. I don’t know what that’s going to be like.

I just need to dry my eyes, brush myself off, and get back on the optimism train. Yesterday was just one really bad day. My husband needs me to be strong for him.

Hopefully, six months from now, he’ll be cancer-free and this will be just a memory of something scary we got through together. But for the moment, it’s hard not to hold my breath.

The year of choices being taken away

I have a feeling that I’m going to be different when I come through this year. Wiser but probably sadder. Because this is the year of choices being taken away, the year in which the old normal is blown to bits and we figure out how to create something new from its ashes.

Despite the fact that this may sound a bit melodramatic, it’s really not. I don’t feel sorry for myself, not really. Instead, it’s more like the largest tornado I ever saw was on a path toward my house. It’s not like you can stop it from coming or like it picked you in particular.

There’s no time to lament how things could have been different because the storm is already here either way. Now all I can do is hunker down, wait for the storm to blow through, and see how much damage it does. When it’s all over, I’ll start sifting through the rubble and see what’s left so I can rebuild.

It would be a lie to say I welcome this. I’d greatly prefer that my husband didn’t have cancer and that I didn’t have MS. But if it had to affect anyone, I suppose there’s no reason to think my husband and I should be exempt. He saw a young woman in her 20s with a toddler waiting at the oncologist yesterday, presumably there for a similar reason as he was. Now that’s sobering.

When you realize that this can happen to anyone–and in fact, does happen to people in arguably worse situations than yours–it’s harder to take it personally.

I’ve started to think that maybe when we make it through this year, I’m going to have a hell of a story to tell. Maybe that will be my book, about how we got through the year when my husband was diagnosed with stage 3 cancer and I was declared officially disabled with multiple sclerosis.

It’s not necessarily the story I ever wanted to write. But maybe it’s what I’m supposed to write. I think I will find hope and meaning in all this, mixed in with the fear and pain.

On a somewhat related note, I had a sobering realization yesterday. I decided to put grad school on hold for another year, figuring I wouldn’t be able to devote attention to it while caring for my husband and household while he fights cancer.

But then the thought occurred to me: can I really go back to grad school at all, ever? Is that even realistic?

I know, I’ve expressed similar thoughts here before. But given my determination to get through grad school because it was something I really wanted to do, I don’t think I ever believed that simply not being capable was even a possibility that crossed my mind.

At one point, I do believe I was at least quasi-intelligent. I always had hideous math skills so I was hardly the next Stephen Hawking, but I do think I used to have a pretty sharp mind. I was pretty good at learning and making analytical connections.

In some ways, I still have a sharp mind. The neuropsychologist’s exam proved that I still have amazing verbal skills. But I don’t have the follow-through or memory anymore like I once did. I don’t have the physical or mental stamina to sustain use of my verbal skills for any great length of time.

I’m only now really starting to come to terms with what it means that I got approved for disability. I didn’t even have to go to court to prove it. I am legitimately sick. Like, for real–my attorney told me that it’s actually not that easy to get disability in my district, statistically speaking, and that I should prepare for a long fight.

The fact that I didn’t have a long fight only seems to confirm what I already read in my neurologist’s notes and radiologist’s reports. Of course, my failed attempt to work last year was likely also on my side. Apparently my brain is (as one might say) actually pretty fucked up.

I knew I was in denial–to be honest, I’ve been fighting that since my initial diagnosis six years ago. But I don’t think I understood the extent of my denial.

My whole grad school plan was more of that denial. I thought that because the disease-modifying drugs were making my brain a little clearer, I could go back to being the hard-driven, academically achieving self I used to be.

I’m just now getting a glimpse that those days are really gone, no matter how much I don’t want them to be. I know I can get into grad school, but I also feel pretty sure that it would only be a matter of time until I crashed and burned. I mean, I only made it two months at a full-time job last year. Wanting to be capable does not mean I actually am.

It’s an understatement to say that I don’t like that. I’ve made a ton of progress in overcoming my control-freak tendencies over the years, but I still bristle strongly at the idea that there’s anything I can’t do. Those are fighting words for me. Tell me I can’t and I’ll do it just to prove you wrong.

Yesterday was the first time it really occurred to me, for real, that my future may be out of my hands. I may want to be the most inspirational, odds-beatingest disabled person ever, one who achieves more than most non-disabled person do. But just because that’s who I want to be doesn’t mean it’s who I can be.

That’s super hard for me. I’ve worked so hard to stop feeling sorry for myself in general. I’ve stopped blaming others and feel like I alone have control over my fate.

But multiple sclerosis is no respecter of what you want. Neither is colon cancer. It wouldn’t be called “fate” if you could control it.

That in itself is complicated. A lot of people have this whole “triumph of the human spirit” concept in which they expect people to overcome tremendous odds stacked against them. I wanted that to be me. Anything that tried to get in my way would just be an excuse I’d defeat.

But just like you can’t run a marathon with a broken leg, you can’t make your brain work right when you have multiple sclerosis. You can’t get rid of cancer if you just concentrate really hard.

Whether you believe in fate or God’s plan or that both of the above are bullshit, it remains a fact that no one can control life. We all work with what we have within the circumstances we’re given. Some people have much harder circumstances with bigger obstacles to overcome than we do.

Who am I to say how much we should be able to accomplish given our circumstances? Maybe being alive, getting up another day to fight again, is the best we can do. We’re getting into big-time “meaning of life” questions now. Maybe there is no meaning of life. Or maybe it’s just to find a sliver of happiness in whatever circumstances we face.

I never thought these would be my circumstances. I’m still honestly in shock about and trying to process the fact that my husband has cancer, let alone the fact that I am officially really disabled.

All I can do is sit through this, try to take things as they come, find some peace and joy in the present moment. Because I’m learning that control over the future is an illusion.

If you’re lucky, nothing bad ever happens to you. But it might. Then you get to level up to the challenge round of life and you have whole new battles to fight. Maybe leveling up is a sign that you can handle it and will become stronger. Or maybe all that’s bullshit, too. I guess we’ll find out.