Saturday, May 9, 2015

What Changes Are Coming?

I'm asking for some input and advice.  I'm especially needing input and advice from those who have been there.  Let's get really specific, if you or anyone you know has made breast cancer decisions and also happens to use a wheelchair, I'd love to hear from you.

Here's where I am in this whole process.  I am awaiting genetic testing.  When those results come in, final decisions will be made about surgery.  If the results are positive, they are recommending a bilateral mastectomy and removal of ovaries.  If the results are negative, I have more options:  lumpectomy with radiation, one-sided mastectomy, bilateral mastectomy.  I have decided I will be having a mastectomy regardless of test results, maybe even bilateral.  Removing the lump will still leave cancer in the milk ducts, and although we hope the radiation kills it all, that is really all it is, HOPE.  I don't want to spend any more time than necessary hoping my invader is really dead and not just hiding out waiting for later.

Then, I have to decide whether to have reconstruction or not?  And if not, to wear a prosthesis or just live flat?  The big decision about reconstruction or not is it's impact on my independence and the use of my arms.  As wheelchair users know, your arms are important.  They basically do the work of arms and legs for me.  I also know, it is definitely possible to live a full life without 100% use of your arms.  I happen to personally know amazing women who use a wheelchair, have limited arm use, and have full, successful lives.   I began what I call my "new normal" almost eleven years ago when I began life in a wheelchair.  I'd like to think I have successfully figured out how to do that.  Well, my husband told me, I am just getting started figuring out my "New, new normal."  And, I know whatever that means, I can do this.  But, I don't want to.  :(

I've been told that reconstruction will mean a long recovery period.  And, it will mean weaker arms and shoulders, possibly for a few weeks or months, possibly forever.  Do I want to risk that?  Is reconstruction really worth the risk?  

So, I'm asking for help making these decisions.  I know the final decision is mine, but I'd love to be able to weigh as much advice as possible.  I'd also love some advice on what's coming and what I should do to prepare for this change in my life.

I've started arranging for increased help following surgery.  I know I will be much more dependent on others, especially if I can't use my arms.  I've started the process for some additional accessibility modifications to my home that will be needed as I lose independence.  I've started trying to plan ahead for meals, things to keep me busy while still following doctors orders after surgery, clothes I can get on after surgery.  What kinds of clothes should I plan to wear?  

Right now, I'm trying to focus on preparation for surgery.   But, chemotherapy and radiation are still possibilities and hormone therapy is definitely going to be part of my life.  So, for those who have experienced these, what should I be thinking about?  What plans should I be making?

I'm counting on all of you to help me through this.

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  1. I am guessing you have probably heard of Joni Eareckson Tada, the lady wiht quadriplegia who also had breast cancer and a mastectomy. Nick Rice's family knows her and I understand Nick did an internship with her organization. Betty Rice told me Joni was very approachable, so I was thinking that if you haven't already, you might consider her as a resource for some of your questions.

    1. Thanks for the information. I had already thought about contacting Joni Eareckson Tada but I hadn't felt comfortable doing it. I think this is an indication that i should so I will be doing that soon. :)

  2. Angel, I'm a breast cancer survivor of 7 years and friend of Melinda Olson who referred me to your blog and asked if I had any thoughts to pass along to you. Each cancer and each individual are so different that it's a little like apples and oranges, though for all of us the treatment options are basically the same: surgery, chemo, and radiation. In my case, I had a cancer that was neither hormone nor HER2 receptive, so ongoing hormone therapy was not an option for me as it will be for you.
    I'll pass along something about the order of things, again bearing in mind that our cancers were/are different and this may not be an option for you. In my case also, my doctor had planned to do surgery first with chemo and then radiation to follow. After reading a good deal on the subject, I asked about doing chemo first. Both my surgeon and oncologist felt that was a viable alternative and may even have advantages in that it would be clear whether the cancer was responding to the chosen "cocktail." It went fantastically well, in that the tumor reduced 30% after each treatment which meant there was nothing there when surgery finally occurred as just clean-up. And psychologically, it was much easier to face each infusion of major toxins into my body knowing that the chemo was killing the cancer effectively, whatever else it was doing to my body. But if I had not asked, it would not have happened that way.
    Secondly: though there were plenty of sober moments of indecision, worry, frank discussions and so forth, a big thread running through it all was a sense of dark humor about it all. My family, friends and I actually laughed a LOT, and I think that was very good treatment. I made a series of cancer cards just for my own amusement and that of my family, friends, doctors, nurses, and fellow cancer-sufferers. It helped me, it helped them. Your writing this blog is a very good move in sharing your experience and allowing others to share info and support.
    Third thing: this is a little wacko, so do with it what you will. It has to do with how you think about the cancer. I never thought of it as an invader from outside, but something that my body had grown that had gotten out of control. At first I thought of it as a machine whose off-switch didn't function and tried to visualize it slowing down gradually and stopping, turning off. Then the image of a toddler in full out of control tantrum popped into my mind so I visualized soothing, talking to, hugging. Did it make any difference? Who knows. I certainly would not rely on this alone and believe my doctor's choice of meds made the greater difference. But the response to the meds was unusually good, and it hasn't come back, so I like to think laughter and visualization were important parts of the treatment regimen.
    I'm sorry this is happening to you and your family, but think you are approaching it entirely appropriately and pro-actively. My best wishes to you and your family as you go down this unexpected detour.

  3. Thank you so much for your advice and comments. I am trying to gather as much information as I can and especially cherish that from survivors. I know that every cancer is different and so is every treatment. I have discussed order of treatment with my doctors. Since my tumor is small (1 cm) we have decided surgery first because the pathology results from surgery will then determine if I even need to undergo chemo or radiation. Those are treatment steps I may get to skip. We'll see. I definitely understand the importance of laughter throughout this whole ordeal. I don't know if Melinda shared with you but I was in a car accident almost 11 years ago and the three months that I spent in the hospital at that time was filled with tons of laughter coming from my hospital room. Thanks again for you words. If you think of anything else I should know, please comment again.


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