Keeping Calm, Sort Of

disease-is-warWell, thanks to Xanax, Bible reading, and creative outlets like this blog, I have been maintaining a certain amount of calmness in my life.

My latest visit with the oncologist was fairly neutral. He agreed with my decision to have the bilateral mastectomy without reconstruction. As did the surgeon, he also believes that reconstruction with the PTEN mutation present would likely present some difficulties not faced by a more normal patient. And of course, he also agreed that I should have a hysterectomy to follow.


Today was my 5th chemo treatment. Just one more after this until surgery.

Where does that leave me at this point? Various feelings, whether anger, depression, blessed, whatever.

  • I’m angry that I have cancer for a 2nd time and that the revelation of the PTEN mutation has put yet another kink in my treatment/surgery plans. Plus the unending scans that will follow afterwards.
  • I’m annoyed that I most likely won’t be able to have the many, many benign tumors on my arms removed in the short term, if at all. If the surgeon is forced to remove all of my axillary lymph nodes on the right side during the mastectomy surgery, then removing any of the lipomas and vascular tumors on that arm will be impossible. The surgeon said she might be able to remove two lipomas on the left arm during the mastectomy surgery. Lumpy I will remain for quite awhile.
  • I’m hurt by a lack of support from those who matter most. But I feel blessed to have a few close friends as well as many online friends who give me great love, encouragement, and prayers.
  • I’m angry to have lost so much in a short amount of time. Work, creative engagements, hair, health, etc. Thinking about having to rebuild my life after all of this is over is discouraging.
  • I felt blessed today to receive a very positive note from my chemo nurse. She gave me a hug after I thanked her for the kind words.
  • Although they’re a handful, the kittens have brought a lot of fun and cuddles to my days.
  • I do prefer knowing the truth of my having PTEN Hamartoma Tumor Syndrome, but I am annoyed that the doctors know so very little about it. And I am angry when I think about just how much of my life it has affected over the years. All of the surgeries, illnesses, infections, tumors, cancers, treatments, etc. (My first surgery was at the age of 4, if that gives you any indication.)
  • I am annoyed thinking about my quality of life after all of this is done. A hysterectomy and the planned 10 year regimen of anti-estrogen medications will have long-lasting results and side effects. Plus, the whole issue of living “flat” (without reconstruction).

Yes, cancer as well as genetic mutations are a messy, messy business. That’s the honest truth about it all.

I wish I could provide a hopeful, inspiring twist for the very end of this post, but I’m fresh out at the moment. Perhaps it’s the steroids that I have to take during the week of chemo, the lack of sleep (I’ve been awake since 3:00am), the pain, or simply a total disillusionment with certain things in my life. Take what you will, but this is me at the moment.

I will most likely be offline for the next few days while I recover from this latest chemo.

One thought on “Keeping Calm, Sort Of

  1. I am floored, floored, floored. You write EXACTLY what i wish I could say! I fully understand the Xanax. It helps me with my brain scans and pretty much any other day of the week.

    I fully too get the annoyed part, with doctors. I can back track many many years and can piece the dots together. I try to combat my “annoyance” at the unknown of Cowden Syndrome by continuing to tweet, and write, and post on Instagram. I really don’t think we are as “rare” as they say. I bet we are WAY more than 1/200,000 people. You know? We are stronger together.

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