Friday, August 17, 2012

Paperwork and Illness, USA

My hardest won piece of advice in working alongside Social Security Administration? Laughter and endorphin-raising exercise, when possible!

As soon as I applied for Social Security Disability Income, because of my new-found inability to work associated with my long-term illness, I discovered a new form of work – paperwork performed for the SS Administration. It stupefied me how many forms had to be filled in and how many more records needed to be supplied. What surprised me most, though, was the continuity of the work. Something new every week, a new situation to be solved every month or so. And then waiting to hear the Result. Making phone calls – finding out how much of your day could be eaten up on hold, waiting for (hopefully) the right person. Making trips to SSA offices – as infrequently as possible. That was the Whole Day.

I took up this new form of work in my life at first with wonder, then frustration, impatience, tears, more symptoms of my illness, insomnia, unrelieved stress, and belief there was no one to help. But the paperwork never stopped and the win-lose levels were raised, and I sought relief. That’s when I discovered I could laugh at the worst moments. I could completely let go and find peace inside. I found a new perspective and I began to sleep at night. Stress was relieved. And I got help, too!

If you have Disability Income and have some difficult issues with the SSA to deal with, you can contact a federal legislator – a congressional member’s office. Preferably a well-known, well-connected Senator in your party of preference. And plead for mercy. They have people on staff called Constituent Advocates whose job it is to negotiate with SSA (and other federal agencies) for you. That pleased me no end. I love to pass along that bit of information because it’s so invaluable, and because it helps you laugh when you’re not laughing and should be.

Set this short list to memory and you, too, will be fine –
·      Hope for the best
·      Take names, always always always
·      Relax
·      Exercise as much as possible to build a store of endorphins
·      Eat dessert whenever you can

There are many secrets I have to keep with Social Security. But not these. They are mine, and now yours, too.

Monday, August 13, 2012

Post-Mastectomy Blues – Breast Surgery, Part 2

It’s a secret – no one knows what a mastectomy surgery will leave strewn in its path.

I had no idea what to expect – not really. I knew I’d have a drain and another tube connected to a Pain-Buster, both coming out of the incision after surgery. I knew I could shower within the first 24 hours after surgery. I knew when I’d return to see a nurse practitioner for dressing removal. I was given some exercises from the nurse at the hospital, and she said they were really important to do. I knew it all hurt.

I was in shock after the surgery, though. A shower? Too complicated for me with the two drains. I couldn’t look at the surgical site, even with the dressing on. I couldn’t think or feel anything. Just do exercises, go see nurse about dressing and drains.

When the drain and the Pain-Buster tube were both removed, the extractions created strange sensations in my now foreign land. The nurse touched the incision and there was numbness and then feeling, then pain. I told her. Yes, you’ll get that. Get what? I get nothing so far.

Eventually I was without dressing and drains, and left on my own. I took a look in the mirror at the incision. I couldn’t bear looking at it – I felt so ugly and deformed. Thankfully it was late fall in Colorado and I could wear bundling clothes – sweaters and layers that faked the breast that was no longer there. But when I’d go to the bathroom and take my clothes off to take a shower, one brief glance in the mirror would horrify me. I learned not to look.

Was I supposed to know this? Was I supposed to have asked the oncologists (there were so many of them) and the nurses what to expect physically and emotionally? I didn’t know the questions, and I was too worried about Having Cancer to even consider the other side of Getting Rid Of It.

I couldn’t touch the incision except very infrequently. I would try to imagine a lover ever wanting to touch my body again. My breasts had been so sensitive. They are a secondary sexual characteristic. What do you do without one of your breasts? What about women who lose both breasts to cancer? What do they think, feel, experience with no breasts and two incisions that don’t feel at all like breast tissue used to feel?

I felt de-sexed. I felt cut upon and violated in the worst way. I had submitted to a body part amputation with no knowledge imparted to me of what that result would be.

It took months to go to Nordstrom and be fitted for a prosthesis for my left breast. I wish I had gone to see them prior to the surgery. They treated me like a woman – a woman! – and anticipated my emotional responses. They protected me. They coddled me. They beautified me. They brought me a little bit closer back to being a woman and feeling sexy and feminine.

If you’re diagnosed with breast cancer and mastectomy is offered as the preferred surgical option, are you willing to ask all the questions about the result? Will you go beyond cancer recurrence and ask about the exact physical result? And then, will you go beyond the physical result and ask for information and support for the emotional results of mastectomy – and honestly, any breast surgery? And are you willing to show your naked heart and ask for help?

Saturday, August 4, 2012

What’s it really like? Breast Surgery, Part 1

When you’re diagnosed with breast cancer, there is a lot of scientific-medical-surgical consulting that takes place. There is a sense of urgency – for both the doctors and the patient. Get it completely diagnosed, measured through biopsy, PET scan done to see if there is cancer anywhere else in the body. Usually the patient talks first with an oncologist and then a surgeon. The surgeon makes recommendations based on the location and size of the tumor.

“I have a tumor. It’s malignant and growing. How fast? Has it gone into my lymph nodes yet?” These are some of the thoughts I had. “Will I need chemotherapy, radiation?”  

“We won’t know about chemo or rad,” the scientific team says, “until your Oncotype testing comes back two or three weeks after the surgery. It will also measure the likelihood of recurrence and the need (or not) for chemotherapy and possibly radiation.”

No one – No One – asks you how you’re feeling, either physically or emotionally. The decisive and urgent actions to eradicate the cancer growing in your body are the focus of the whole medical team – oncologist, breast surgeon, oncological radiologist.

I was given the choice of lumpectomy or mastectomy. But two surgeons highly recommended mastectomy because of the placement (behind the nipple) and the size of the tumor. I wanted it done, cleaned, gone. I have such small breasts, barely a handful. I chose mastectomy; the doctors noted duly, good choice. Had ... such small breasts. One breast now. And many women lose both at the same time and in the first surgery.

But no one came to tell me how it feels, not physically but emotionally and mentally, to have a breast removed. A lumpectomy, too, can be deeply invasive and heavy scarring results. No one asks something like, “Do you know or suspect that you have PTSD from any other event or process in your life? Who are your caregivers after surgery? We’d like to meet with as many of them as we can so we can prepare them for your physical needs, but also your emotional responses following surgery.”

No. No one comes and asks these questions. Perhaps a woman, with breast cancer awaiting the surgery, has been raped in the past. Maybe even 20 years before, and still has PTSD, and she’s beginning to see and feel the tiny signs of being triggered – rising anxiety, full-blown panic attacks (Oh, I just had one – and then another comes along two days before surgery).

No one prepares you for the full impact of the first minute of awakening from anesthesia, as you slowly remember why you’re in the hospital bed hooked up to IVs and you don’t know what to touch, and you don’t want to touch anything.

Part 2 tomorrow…