My Day

I’m not a strong person. And today confirmed that for me.

I’m going to have to have a mastectomy. *WHEN*. Not if.

I always knew this was around me. I’ve read the paperwork, heard around the way “85% lifetime breast cancer risk”.

This is all thanks to Cowden Disease, a rare disease that affects 1/250,000 people.

(NOTE: This rare disease is so rare that it has different names. It’s also known at Cowden’s Syndrome/Cowden’s Disease/or just Cowden’s. I just mixed it up tonight and put into the search engine a different group of words; they all mean the same thing basically.)

I saw the surgical oncologist again this morning. Another Dr. F. (I have 3 Dr. F’s on my team.) She was great. Spent so much time with me. Listened to me cry. Listened to me ask questions, ones that I couldn’t even really articulate. I’m thankful that she’s an oncologist too. She is very down to earth and very personable. I asked her how many PBM’s she’s done…“A lot” she replied. πŸ™‚ She gave me some other numbers about 1 in 8 women will be diagnosed, age increases the risk, etc. etc. I’ve seen her once before but for some reason this morning’s appointment was different. More Real. More Terrifying. More Panic. More Fear. She asked me what scared me the most about this? And, I should have said a couple of things:

The first thing is that I’m scared to wait too long and no longer consider myself a Previvor. That in December when I have the breast MRI my right breast that has acted up and causing me pain is going to have an incidence. THEN WHAT.

The second thing (I did tell her) was that ~ it’s surgery itself that scares me. It hasn’t been long enough since the craniotomies and when I was awaking from the 2nd surgery…the nurses weren’t doing a lot for my pain management. I WAS IN SO MUCH PAIN WAKING UP FROM ANESTHESIA AT THAT SECOND CRANIOTOMY. I don’t know what made it different from the 1st (I vaguely remember mom saying Dr. K. saying something about WHY my pain was so much more)…but I still don’t know why the nurses weren’t able to give me more medicine for my pain last July.

So. What do I do with this information?

I don’t know. I don’t know. I don’t know. I don’t know.

I thought that having brain surgery was enough in these 40 years of my life. But I’m not done. Apparently.


This cannot define me. I cannot let it drag me down into this pit of hell and depression. I want it to. Believe me. I want to change into my PJ’s and get into my bed, put on my “Friends” DVD’s and just check out. Really. I mean…I AM THIS CLOSE TO DOING THAT.

But really.

If the one thing brain surgery taught me, besides ANYTHING else, is that “LIFE HAPPENS.” And then it goes on.

I’m just a jumble of things now. Surgery now? Later? When? WHAAAAAAAAAAAAAAAAAT? With the brain tumor I had no time to plan. No time to process anything. What I hope to do here is do my due diligence and then make an informed decision.

That’s my goal. In a perfect world. I’m going to strive for this every moment because what else is there? It’s not going to work all the time and I’m going to struggle. A LOT. You know those friends I’ve mentioned? Here is when the rubber really DOES meet the road. Here’s where I need help. Love. Prayers. Support. Friendship. A, “Hey Heather! Just thinking about you…how are you today?” And here’s where I’ll see the truer colors of many people. People who are “In it to win it” with me…or not. I don’t know how to go about my day and not be consumed with this.


How do I let these doctors cut off a part of me? (Yes, I would have immediate reconstruction.)

I don’t understand. I don’t understand anything. I had hoped that I’d be married and be a mother at this point in my life. It’s now looking that I’m a brain tumor survivor who must have a mastectomy among other things that Cowden’s Syndrome presents to me. What happened to the life I thought I was going to have? Where did that go? How come I can’t have that life?

So after the appointment this morning I went to the park and walked for a bit. I knew I couldn’t, and didn’t need, to make any decision today. I came home, hugged my mom, took a few deep breaths and did the next best thing. I went to babysit this cute little girl in my ward (who refers to me as “My Heather”) .

We played “Ants in the Pants” and didn’t follow the correct rules – we followed M’s rules. Which is just basically, “My turn.” – then “Heather’s turn.” – with little plastic colored ants flying every which way. πŸ™‚ All this while watching some Dora.

And then there’s tomorrow….



29 thoughts on “My Day

    • Thanks for your kind comment Courtney. I’m glad we connected on Twitter and I didn’t know you have a blog, etc. I’m going to spend some time reading your history as well. πŸ™‚

  1. You’re right…life happens. You will know when the time is right. Just be patient with yourself. This is a physical, mental and emotional journey. Check out when you need to and watch Friends…it’s good for the soul. πŸ™‚
    Hang in there!

    • Maybe this should be private (email)….but I would love to ask you….when did you decide to make the decision? (Barring your complications)….how did you KNOW when it was time for you?

  2. I have learned from a great group of kids facing cancer NEGU it means never ever give up. While my journey is totally different I have not had to deal with the big C they have taught me to smile when I am sad, dance in the rain, jump in a mud puddle. We can not change the course we are on but we don’t have to give in to it. Yes check out long enough to recharge then get up dust yourself off and get to jumping in those mud puddles. Prayers to you.

    • And to you! I just read a few of your posts and made a few comments. WOW, the CSF thing really hits home for me. I’ve heard the NEGU…found it on Facebook, I think. Your positivity is infectious….thank you for going with me on this road.

  3. I feel your pain about the marriage-thing (especially in ‘this day-&-age,’ where there are more-&-more teen/twenty-something parents & thirty-/forty-something grandparents).

    If we had spouses-&-children who loved us (and whom we also loved), we could focus on improving their lives and so let ‘the goodness of G-d’ (family-friends & neighbors who want the best for us) take care of any of the woes that might befall usβ€”or we could let any woes that do befall us simply pass away because they hunger for attention that we cannot give them!

    Maybe THAT’s what you need—to find someone to take care of you as they can, take care of others as you can! (As for the cancer-stuff: let the doctors-etc. take care of it, and maybe try to be as inhospitable to it as you can … eating anti-angiogenesis foods, cleaning out your system, etc.)

    • I’m working on some of the cleansing of my system, watching my sugar intake as much as I can. (I read your blog post about this….but, don’t you think I was lamenting more about my decision before me…not that I’m currently single?) πŸ™‚

      These 2 rare disease diagnoses have been difficult for me for many reasons, but one of them is that there’s so much attention on me (medically speaking). i wanted to just live my life and do all those things I’d hoped (the marriage/children thing). I KNOW that I can’t take care of anyone, nor anyone me…but the support is really what I need. REALLY. I have turned to some support groups for my rare disease but that hasn’t been the right decision. This blog has been just what the doctor ordered (pun intended!)

      But I won’t lie and say that I don’t WISH I had someone in my life to “take care of me”…a partner. I’m human. That’s where I’m at. I’m learning tho that’s not in the cards and it’s just me and my family. (Well, and my cats, too.) Oh, and my doctors. πŸ™‚ For which I’m very thankful.

    • I plan to go back to the next one next month. They are monthly and about an hour away…but I felt the importance of them for me. Even though I was the only one there with a benign brain tumor, I knew I belonged there. Thanks for the pep talk!

  4. Wow! I have been going through your entries and you are a hell of a woman! I enjoy reading you and I find it amazing how you are willing to let others into your journey. Whether people get to you because they are searching the same diseases that affect you or just by accident, you clearly have a lot to give to all

  5. I’m glad you started this blog so that you can build a larger community. My great-grandmother had a masectomy, and used the empty cup to hide her money when she went to Vegas. There’s always light, even in the darkest of times.

  6. The unfairness of the world really kicks in when I read posts like this.
    The fact that people struggle so without any fault of their own is another driving force for my sobriety – I am causing my problems, and so many others have no choice in their own. It makes me feel sick that I can be selfish in that regard.

    I wish you the best of luck both for the surgery, your recovery and for your mental and emotional wellbeing. You say that you aren’t a strong person, but I think you must be the only one who sees it that way – you said it yourself “life happens. and it goes on”.

    Only strong people understand that. You are definitely one of them.


    • I only recently found your blog…and I’m glad I did. I’m in another 12-step program and have many experiences with others as well. I know that those (including yourself) who struggle with sobriety (or any addiction) do not choose it, therefore I don’t agree with you that you are causing your own problems. Selfish? NONO. I disagree with that also. You’re pretty UNSELFISH if you too are sharing your journey with others. It’s quite healing, yes?

  7. What an incredible journey you’ve been on and i can see there’s more health wise that will be needing attention. Take care of your self!. Life sometimes – most times has other things in mind than what we planned. But you’ll get there.

    This is the first time I’ve visited your blog, actually, you visited me first, thanks by the way. I’ll be back Heather.
    I have a daughter name Heather!!

    • I found your blog off another’s you commented on…I blog hop a lot. πŸ™‚ I think I followed you or if not I’ll do it soon. Reading the blogs of others helps me to not feel alone. Thanks for your pep talk too. Sometimes…I feel like I’ll “never” get there. I thought I knew where “there” was….now….

      it’s all a mix…

  8. You’ve dealt with way more than anyone should have to in an entire lifetime. You still are a cheerful, giving, and positive person. I think all of this means you are strong even if you don’t think so.

  9. Heather…….i understand what relief a diagnosis and a decision on a procedure can provide. But please keep affirming that you are not defined by your diagnosis or these ailments. By blogging and putting them out there you are helping others with the same illnesses. You and we all have the innate ability to heal ourselves from the inside out. You are a brilliant bright star with a beautiful heart. Just please keep your faith and hope. I know you use affirmations. You are already enough and you are a healthy amazing woman. Accepting and loving ourselves the way our higher power sees and means for us to be is the best healing tool of all. You are lovable, very capable or a loving and supportive partnership. You will find him when you are least expecting him……love you….xo

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