125

How many things have you done 125 times? I’m not talking about things like eating, using the bathroom, and going to school and work. I’m talking about things you do, and do deliberately. I think I may have been to the movies 125 in my life, and I’ve been dancing 125 times. Other than that it’s really hard to come up with something I’ve done 125 times- except chemotherapy. When I mention that I’ve had 125 chemo treatments, people invariably joke, “But who’s counting?” Well, I am. I’m counting because when I’m feeling like shit, or unable to do something simple like go out to a movie with my wife, or hang out with friends, or cook dinner, or fold laundry, remembering that I’ve had chemo 125 times reminds me to give myself a break. It reminds me that I’m going through most people’s worst nightmare, and so far, I’m doing okay. It reminds me to be a little gentler, and kinder to myself. Does it always work? Honestly, no it doesn’t. But I’m working on that.

There are a great many things that people aren’t familiar with when it comes to chemo. First, as soon as you start chemotherapy you feel sick- the side effects are pretty much instantaneous and vary with different treatments. The severity of the side effects also depends on the treatment and the individual. Once you start chemo there isn’t a day that goes by that you don’t feel the side effects; in addition to having cancer, you feel sick in multiple ways all the time. Each time you start a new chemo regimen you get a different set of side effects. Some overlap- just about all of them causes nausea and fatigue, and the effects are cumulative.

I’m often told I “look good” or that I don’t “look like what a cancer patient looks like”, or at least what most people think a cancer patient should look like. My hair has, at times, thinned, but never completely (thankfully) fallen out, and I’ve been on steroids for the last year and a half so I’ve gained 20 lbs., not lost weight. I’ve had a pimply rash for about a year and a half, cuts on my fingers where the skin has split, and infected nail beds, but nobody really sees those and thinks “cancer”. While I may not look like what most people expect when they think of someone who has cancer, I am here to tell you I am exactly what someone who has cancer looks like.

Unfortunately most people get their “knowledge” of living with cancer from movies and TV. These are horrible sources for the reality of living with cancer for an extended period of time. Stereotypically, in a movie, the person gets cancer, loses their hair, loses weight, and either dies in 6 months, or is cured and lives happily ever after. And they do it all within a 2 hour runtime. In my reality it’s been over 1,700 days that I’ve been undergoing chemotherapy, and I’ve felt sick since the first day of the first infusion. I did have a 3-month break from chemo February 2017– May of 2017, but in that time I got severe pericarditis, and had an incisional hernia repaired, so that “break” was not a time when I was feeling particularly well.

When I discuss chemo and it’s side effects with people, it’s usually 1 or 2 side effects at a time. A common response is, “Well, it’s keeping you alive, so I’m okay with that.” Nice to know that other people are okay with me suffering side effects. Snark aside, I understand that people are happy that I’m alive, and they see side effects as a “small price to pay” for not dying. The truth is there isn’t a time where it’s only 1 or 2 side effects that are affecting me at any one time. I’ve come up with a list of the side effects I have suffered during the last 4 years and 8 months. Not all of them are from chemo. Some of them are from the medications taken to help alleviate the side effects from chemo, and some are just things that you get from having cancer. While I don’t have all of these side effects at the same time, on any given day there are at least a half dozen of them that I do have.

• Anxiety
• Frustration
• Anger
• Mood swings
• Nausea
• Fatigue
• Chemo Brain
• Depression
• Hair Loss
• Vision changes
• Compromised immune system
• Surgery
• Cold Sensitivity
• Shortness of Breath
• Bleeding gums
• Bloody nose
• Body Aches
• Cramping
• Headaches
• Neuropathy
• Mouth sores (Thrush)
• Chapped lips
• Change in taste
• Dehydration
• Feeling sick
• Diarrhea
• Mucositis of the urethra
• Low testosterone
• Lactose Intolerance
• Changes in appetite
• Changes in food tolerance
• Constipation
• Anal Fissure
• Sore Ass
• Moisture Associated Dermatitis (M.A.D. Ass)
• Rash
• Acne
• Sweating
• Itchiness
• Weight Gain
• Infected nail beds
• Dry skin
• Cracked skin with cuts
• Insomnia
• Flatulence
• Thinning hair
• Long eyelashes
• Spending most of the day in the bathroom.
• Spending most of the night in the bathroom.
• Needing to know where a bathroom is before I decide to go someplace.
• Not being able to go someplace because I won’t make it there before I need the bathroom.
• Missing a meal in a restaurant because I’m in the bathroom.
• Having to find someplace that has a bathroom while driving because I won’t make it home in  time.
• Having to turn around and go home because I won’t make it a full evening out.

Just because these side effects are unseen, doesn’t mean they’re not there. Living this long with cancer is something that’s unfamiliar to most people (me included). Once again I’m lucky in an unlucky situation. I’ve lived long enough to have 125 treatments, while there are many others who die before getting anywhere near that. On the other hand there are those who become NED (No Evidence of Disease) and stay that way for months or even years without treatment; something I haven’t been able to do. I’ve been NED, but it hasn’t lasted long enough for me to be off treatment except for the aforementioned 3 months. I keep hoping that the next time I get to be NED I will stay that way for an extended period of time. Until then, I will keep having treatment, and keep having side effects while trying to live as normal a life as possible.

Number 126 is tomorrow.