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My Tiny Life Story

This is how I feel sometimes. I do indeed live a tiny life. This happens to some people who live with chronic illness. And some people don’t have a close, loving, immediate family around them. Oh, I have someone, and he is wonderfully understanding and supportive- I can’t believe my luck there, seriously. I also have some family, though they are spread out. After lifetimes of not doing family, we’re trying to figure it out in our own weird little ways… it’s working so far. It’s primarily through text, sometimes by phone. The point is that I don’t have a lot of people buzzing around me constantly. I designed my life a little that way, and then it got much smaller…

My tiny life began in October of 2014 when I started chemotherapy for Stage 3 breast cancer. I was being treated as though I were Stage 4 because it was pretty advanced for a 3 but not technically a 4. I had two cancers, one was aggressive, it had some rare features and mutations when it spread to my lymph nodes… as if the original wasn’t mutant enough. I was in chemotherapy for 17 months, it’s usually 12, so you get my drift here. When you start chemo you are strongly cautioned to not be around a lot of people, be very aware of who is sick… and don’t do that! It’s best just to not have a lot of people around. Don’t go into crowds, etc. You have a more than compromised immune system. The truth is, when you’re doing chemo, you don’t want to go anywhere anyway.

Thus began my tiny life.

I was starting to have joint problems nearing the end of chemo and was suddenly hurled forward into the second blooming of Rheumatoid Arthritis, and this coupled with Fibromyalgia… do I need to say the words? I was so miserable.

Aside- I was originally diagnosed in mid-1993. Those were some really bad years. Somewhere around ’95, I was dealing with suicidal depression, who wants to live in horrible joint and muscle pain day and night? In a moment of clarity, and a rational friend, I made an attempt to save my own life. I couldn’t do anything about the pain but I could do something about my mind. I went into therapy for 3 years. I’m a great emoter. It was like the door jamb to her office was a magical line that when crossed sent me into tear squirting and willingness to cry my entire life out.  It was the catalyst that pushed me to change my entire life, and I mean completely! Totally! Again, as if by magic… in the summer of 1999, I went into remission. What?!? YES!

Back to the story, there I was, post-cancer treatment and being worked up again for RA. I’m just going to add the little nugget here that chemotherapy and radiation therapy really did a number on me and I have several issues to this day because of it. So, you know… it’s yet another Peggy Lee moment when facing down more bad news. You aren’t seeing it, but I just smiled. Life is ridiculous in what it throws at you. I’ll get back to that.

We started treatment with what I was on years ago (and this is a common treatment plan for RA)- Plaquenil (Hydroxychloroquine), several months later it’s not enough. We add Methotrexate weekly… it’s not enough! Too much unrelenting pain. Folks, I’m a stubborn woman sometimes. When I first walked into that office I told them pain meds are out. Steroids are mostly out but I’m less rigid if we can’t get the pain handled. We have the discussion and I am honest about restless sleep, waking in pain, taking 4 hours or more to get going, changes in how I dress because of inability to move the same. The kitchen is mine enemy! I only say that because I can’t be on my feet very long and it takes way too long to cook and clean. Bottom line: Activities of Daily Living SUCK! Go to bed in pain, wake up in pain… yeah. I don’t want to live this way.

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Big breath. I have a very compassionate RA guy. He acknowledges everything I say. He is the one who coined my phrase- ‘I know your life has been a tiny life for a couple of years now, cancer treatment does that, and I promise I’m going to do everything I possibly can to help that.’

He gets it! I mean, I know he has heard the stories a million times, but he just seems to really understand…

I know I’ve talked about this before, there are things that just happen in life that are beyond our control. We do choose how to view them. I will admit I feel victim-ish sometimes, but I try very hard to cut that shit short. My partner and also my friend, Abigail would agree that I pretty frequently am having new ideas, or doing new things because I think they would help me in some way… physically or mentally. I’ve learned a lot about myself, so I agree with the cartoon, “digging for the bone is the reward.” What you gain in thought, perception, and action is invaluable!

The doc and I start talking about biologics. It’s scary. The drug of choice would have been Humira. It was a no-go because I wasn’t 5 years cancer-free. Because I’m considered a very high risk for cancer recurrence, it is especially avoided. Next on the list- Rituxan (Rituximab). These are infusions given every 6 months. Depending on the person they are 1-2 infusions. If 2 it’s given with 2 weeks between infusions. What this drug does is kills specific B-cells in the body, the ones that cause inflammation. I’m an inflammation-producing machine!!! “It works by turning off a part of the immune system that is not working properly in autoimmune diseases.”

I had my first infusion in January of 2017. None of the infusions held the last 2 months before the next infusion. I was in so much pain, dependent at all times on my cane and sometimes the walker, and when that causes my head to become a really bad neighborhood to be in I start making appointments!  Yeah, baby! This last infusion was given at 4 months. This has seemed to work out well! Of course, I realize about the time I figure everything out something else will change. That’s just the way it is. And you know… I’m okay with that. I always embrace change. Life is not static. Ayn Rand said, “Life is a process of self-sustaining and self-generated action.” Process. Got it.

So I have a tiny life. I’m a little encapsulated by choice, by need. It’s weird and different. Sometimes I want something different, and maybe someday that can happen. That is always the hope.

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 “You are an eternal being now on the pathway of endless unfoldment, never less but always more yourself. Life is not static. It is forever dynamic, forever creating – not something done and finished, but something alive, awake and aware. There is something within you that sings the song of eternity. Listen to it.” Ernest Holmes

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