Has A Cancer Diagnosis Changed How You Think?

I was reading over at KatyDid Cancer that she turned 41. After being diagnosed with breast cancer before 35 she was never sure she would get to 40, or 41. (But now she is thinking 50.)

This made me think. How do I think about how long I will live? And how would I think differently about how long I would live if I had never had cancer?

At 19 (and invincible) I had no thought of how long I would live. Because I was barely an adult and between my freshman and sophomore years of college. And longevity was the last thing on my mind. I just assumed it would be shorter than without cancer.

At 45 I was more responsible and married with a second diagnosis. The thought of how long I would live definitely popped up again. But what was most concerning was how would I have thought differently if I had never had cancer? I have struggled with this one: how had my life been impacted by cancer which was something I never wanted. 

During the intervening years my thought processes had changed of course. But how would I have thought different if I never had cancer? I never really had a chance to be an adult without cancer so I have no idea on what I would have thought.

But since I can not undo the past, I have to settle with my current thoughts. Which doesn't give me any good answers.

Quality of Life

I don't know why this took a research study to figure it out. One of the key factors in determining health outcome is health related quality of life for cancer people.  A recent research paper was published which analyzed quality of life factors in multiple cancer trials.

"Of the 30 trials included in this analysis, 3 trials assessed a total of 321 breast cancer patients of any type or stage. After accounting for multiple variables, physical functioning, emotional functioning, nausea and vomiting, and global health status were all predictive for survival among breast cancer patients.

Physical functioning, as assessed by the questionnaire, includes the ability to perform various degrees of effort, such as walking or carrying heavy loads, as well as basic functions such as eating, dressing and washing." 

At my second cancer diagnosis, physical functioning was not an issue. Now, its a different story, walking any distance or carrying things is much more difficult.

"Emotional functioning includes attributes of depression and mental well-being, such as difficulty sleeping and often feeling worried, tensed or irritable."

After one cancer diagnosis, I knew better and made sure I took care of this part. 

"Often feeling nauseous and vomiting were also found to be predictive of worse cancer outcome."

Nausea was my 'frenemy' during chemo. I spent more time feeling nauseous (but that didn't mean I lost any weight). And I'm still here so the jury is still out.

"Global health status includes attributes of both functional and emotional well-being, as well as the effect of disease or treatments on family life, social activities and financial situation."

Family and social stuff took a back seat during treatment because they were less important to me. I did what I could but my focus was on getting through treatment. It was a bummer that I got laid off two weeks before my diagnosis so there was a financial issue but I did get a part time job during treatment that helped.

Back to the emotional part. At my second cancer diagnosis, I knew what it was emotionally like to go through a cancer diagnosis, not cope with it, ignore it, and waste a lot of time on it. I also knew because of how I didn't deal with it, that it took a long time for me to learn to accept it. 

But at my second cancer diagnosis, this was one area where it I was in control and I could make a difference. So I did. 

One of the most important things in my life to this day is my quality of life. This has lots of components but (in the words of Donald Trump) it is HUGE! Why? Because it is in my control. 

The components include everything from where I live, what I do, who and what I include (and exclude) in my life, how I handle my treatments, what doctors I see, what I do to make me feel better. I make a point of getting rid of any one or anything that is toxic in my life. Stressful situations are avoided if possible. Making sure I do anything and everything I can to make me feel better emotionally, which is tied very closely to how I feel physically.

So, my advice is that if you feel like crap or are facing any kind of crappy diagnosis, focus on your quality of life.

Fibromyalgia

How is life with fibromyalgia? Well, not so fun.

Let's see, there is random pain in my body. There is fatigue (and insomnia). There is cognitive impairment. And depression.

Sometimes its hard to decide how I feel from a specific ailment. I mean which pain is bad back, rheumatoid, fibromyalgia or osteoarthritis. I can't always tell. My doctors say it can be very difficult to tell and not to worry about it. But I can tell you when I lie awake at night that I will be exhausted in the morning, like today.

And there is another factor that causes so much fun in my life. Cognitive impairment. Yes, that is like chemo brain that doesn't go away.

Depression? Yes, well lack of sleep, no brain cells and random pain would depress anyone. This is why I keep being asked if I have any suicidal thoughts. I can tell you I do not. Because it would be yucky! I would like to stick around for as long as possible.

I hadn't really contemplated the impact of all the joys which come with a fibromyalgia diagnosis. It came on top of my RA diagnosis, or mixed in with it. But I read this article this morning about a woman's lawsuit against her former employer because she was dropped from their disability plan after she left her job because of health reasons due to fibromyalgia.

I get the same issues she does. But I could never job three miles every day.

The Changing Focus of Cancer

For 25 years, cancer had a changing focus in my life. Sometimes it would leap back up into the front of my stress levels. The changing levels were mostly due to my health. It used to be pretty good but did have its ups and downs. But I did used to be pretty healthy with cancer staying fairly far into the back of my brain.

I was mostly on an even keel. I say 'mostly' because who can say they are continually positive all the time. After a quarter century of a cancer focus in my life when went from all encompassing to moving to the back of my brain, things changed.

Nearly nine years ago, that all changed when I was diagnosed with breast cancer. Cancer came front and center in my life. Actually it came roaring back into the front and center of my life. One thing else I did know at the time was that I had already gotten through cancer once before so I could be slightly optimistic that I could do it again. A tiny sliver of positive things.

But for the next six years probably it was still important to me and a topic of frequent blog posts. But then in 2013 when I was diagnosed with rheumatoid arthritis and fibromyalgia, cancer has slipped in importance in my life, but still lingers.... After two cancers, its never going to go away.

Now I have a split focus in my life, sort of evenly divided between:

• breast cancer
• thyroid cancer
• rheumatoid arthritis
• fibromyalgia
• all the related side effects from all the related treatments

What this means is that cancer is not completely a giant sucking black hole in my life. This is a slightly 'healthier' balance. Not that I am healthy but maybe a saner balance.

I think anyone when they are diagnosed with cancer, it takes over their life, until something changes in their life and they get distracted. So maybe I have been a bit distracted from the giant cancer focus in my life. But it will never go away. But it is allowing me a bit more of sanity. Who doesn't need sanity?

Life with chronic conditions

I may whine complain about a lot of the crap I deal with in my life. I also may be a tad cranky about getting my meds so I don't hurt all the time.

I have a therapist for talking about stuff and I have a meds therapist who keeps me on an even keel. So any issues with depression are held back. I have people to talk things out with. And I know my ailments are not in my head.

I get exercise to help maintain my body as much as I can before my ailments compromise it further. Its not age that is doing this to me.

But so many people just don't get it.

I have a friend with a chronically bad back who has a fair amount of pain. But she doesn't see a doctor about it. She does occasionally see a physical therapist. She has no prescriptions for pain meds because she gets her sister's prescription. She doesn't exercise regularly. And she doesn't understand how I live in pain and have to beg off on group events or leave early. Since she's there and in pain she doesn't understand why I can't stick around.

I also have friends who want to go out at night to do things. Since not much is allowed to get between me and my 930 pm self imposed curfew, I don't go out much. If I do, it needs to have a comfy chair that provides good support. And it can't include any amount of walking or standing.

Finally I have an expiration period. If I am out too long, I spend a long time recovering. So if a friend is late and I spend time waiting around for them, especially if I am standing, I don't get to fully enjoy my time out and end up leaving early to go home and rest before I need to spend a couple days recovering. Therefore I don't spend time with friends who are late.

My husband does understand me. He claims that if I do things I shouldn't or for too long, I am crabby for a day or two. Apparently he doesn't like me when I am crabby. Maybe I should rip off that fake smile and let my inner crabbiness show and then more people might get it.

The hanging sword over your head or embrace each day

I read an article this morning on how a cancer diagnosis changed a couple's perception of life. Without a cancer (or other icky) diagnosis, do we view the definitiveness (yes that's a real word - I had to look it up) of our lives differently than with one? Does the hanging sword called cancer, redefine us, or how does it redefine us?

I struggle with this one sometimes. I was barely an adult (19) when cancer first dropped into my life. Therefore I am not sure I would know how to be an adult without cancer. But have I learned to embrace every day for what it is? I'm not sure either.

I do agree that once cancer appears, life in Cancerland is very different than life without cancer. At my second diagnosis I was pushed deeper into Cancerland than I was before. So as I was pushed in deeper, I pushed back and focused on taking better care of me emotionally. I was more sure of what I was not going to let cancer do to me again - it was not going to take any more fun out of my life. Or suck any more time emotionally from me.

Now almost 9 years from diagnosis number two, do I still feel that hanging cancer sword over my head? Yes. But I feel I have pushed it up higher and further away. Has it changed me? Yes, and I hope I am a better person than before.

After my first diagnosis, if someone I knew also knew someone with cancer, they would somehow get me in contact with them. I didn't always feel comfortable talking to someone I didn't really know who had cancer. Because I had cancer, I was supposed to want to talk about it? I didn't. And that wasn't the best way to cope with my health.

Now I reach out people I meet with cancer, because I don't want anyone to go through all the same hell I went through. I want to help them push that hanging sword further away. Let them embrace their life and not live under that sword.

From the article I read:

"The gift of the diagnosis — and it’s a tough one to embrace, but what choice do we have? — is to dedicate ourselves instead to embracing every day with the particular passion that comes from knowing the number is finite. I am just as glad I don’t know the number of days remaining to either one of us, but I know every day, I have one less. I had better make the best of them all."