Another Anniversary Month

Spring was the season that delivered my diagnosis of MS, and Summer the season of diagnosed depression and anxiety. Another Spring brought me the diagnosis of malignant melanoma and squamous cell carcinoma and basal cell carcinoma. But Fall seems to be the season of memories … quieter, less busy days allow thoughts to ramble, and to remember. Fall is the anniversary of my reclaiming my self instinct, and self esteem.

Syringe

Syringe every evening

A year ago next week, I made the decision that the four years of self injecting a prescribed solution that would ‘slow the frequency of relapses about 30%’ had done nothing positive for me. As I write in my story, I took a leap of faith, that this medication would allow me to finish my full teaching career of 32 years. I’d heard that many people with relapsing remitting multiple sclerosis might see ten years of mobility unimpaired after diagnosis … a vague statistic to say the least, as diagnosis dates rarely coincide with the beginning of the condition. I thought I might last six years ~ I thought the injections would help me meet that goal.

But at the end of four years of injections (actually 4 1/4 years, or 1500+ injections) I’d already taken ‘early’ retirement (at 30 years rather than 32) because my memory was failing more rapidly than I could have anticipated. The day I faced a student in my classroom and could not recall  his name was the day I knew the end had come for my teaching career. That was in the spring. We hired a permanent substitute to finish the year, and I filed papers for retirement. In September, I didn’t have a classroom to return to, nor students to get to know. And at the end of October, I decided to terminate the treatment. Either I had failed, or it had failed.

During this treatment-free year, I have experienced highs and lows. My physical strength was returning gradually. My emotional strength was recovering. But six months later, while I began thinking about decreasing the antidepressant medication as well, I was hit with the diagnosis of skin cancer. Spring became Summer, and both seasons were consumed by repeated surgeries and sutures. I wondered whether my immune system, altered by those years of injections, had let me down and let cancer grow. I filed a form to notify the FDA of this possible link, and left that in their hands.

C0000P0006

suture removal scissors

The trauma of the summer of surgeries, the undeniable physical scars that marked the sites of the cancer … my unrealistic expectation that people would respond to my cancer as I had witnessed their responses, and my own, to others’ cancers … all of this deepened my depression. I felt again that I had somehow failed to achieve a happy, secure retirement for Rick and myself. The expense of travel back and forth for surgeries and sutures on top of the unexpected medical visit costs tightened the belt on our budget, and left us without discretionary funding … funding that would have allowed us to enjoy these months of retirement by visiting our grandchildren, by going out for celebratory dinners in the family, and by seeing more of the beautiful state in which we live.

But we learned to live within our narrowed means. We learned to continue to make more of what we  have, and to spend wisely, putting bills before pleasure, as we had always done in the past. Gone were the dreams of a relaxed budget in retirement. But here were the days that we could spend together, needing only each other for company, and for smiles, and for happiness.

I will never go back to those painful nightly injections for multiple sclerosis.The drug company itself has now begun promoting every other night injections (see below.)  I was right in concluding that the resented treatments were only making things worse. Recent studies have exposed the truth … the injections do not slow progression.  I will continue as long as I can to visit the dermatologist every three months, and to look for more cancer sites to catch early with surgery and sutures when necessary. I will modify my wishes for discretionary income, and make do with what we have, prioritizing visits to our grandchildren rather than to friends and family gatherings. I’ll continue those medical visits that are absolutely necessary, and wean away from those that are not.

And I’ll live each day as it arrives … good days and bad … active and passive as health allows. I’ll keep posting my health status here, where people who want to know will find updates that are honest and truthful, rather than just the social “How am I? I’m fine. How are  you?”

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http://fightmsblog.org/2012/10/01/so-many-needles/

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4 Comments

  1. The truth is always better. It’s a heck of a lot more comforting to me, as someone suffering as well, then “surface talk”. Keep on writing!!!

    • I will do that. And you, also. I have a mantra I’ll share with you – ‘write write write write whether it ever is read.’

  2. I still read. I look forward to any news from our old Strong at the Broken Places board members. I hear you when you talk about downsizing the dreams and expectations. It’s hard to look at my MS and think about it changing my and my wife’s retirement plans. I will keep working as long as I can contribute adequately, but I already know I will not make it another 30 years in the work force.

    As for the copaxone, it did nothing for me either. So I am on Tysabri which has been far better, but even slowing down the beast is not stopping it.

    Still, keep on finding the good things in life. I’ve come to love putting my daughter to bed because we make a short list of things for which we are thankful today. There is always a list, and the thinking of it helps ease any of the day’s stings.

    • Hi Geof,
      Thanks for replying here. I will continue to read yours as well. Enjoy those little ones – they’re not little for long. I read and reviewed a book and thought of you – Eaton House by Melodie Starkey. You might like the reviews at my blogspot site.
      Be well!
      Terry

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