Read blog posts, see Tweets and follow links in this recap of our Twitter chat with Rica Mendes, a Livestrong Leader, LoHud.com blogger and a breast cancer survivor, about the challenges of coping with cancer after the treatment is over.
Rica Mendes, who blogged about her breast cancer diagnosis and treatment here on this blog on LoHud.com last year, says she feels more like a “recoverer” than a “survivor.”
A quote from her Rica’s Livestrong Advetures blog:
Once the scalpels invaded my skin, once parts of me were carved up and discarded, replaced by synthetic prosthesis, I became something… someone… else. I think the question still looms, who or what have I become?
We’ll chat Mendes, a Livestrong Leader, at noon Oct. 4 about the challenges of coping with cancer after the treatment is over. Join us by following @lohud and using the hashtag #lohudbc. Rica’s Twitter handle is @rica620.
Here’s the blog post in its entirety:
Tuesday, August 21, 2012
Sometimes, it’s weird how time flies.
Sunday, 1 year ago, I had my double mastectomy. 1 year and 2 days ago, I still had my breasts, nipples, normal sensation, etc. Now? I have foreign parts installed, tissue that’s technically my own flesh and blood, but feel nothing, let alone hardly feel a part of me, and a strange numbing feeling in my chest.
I think Sunday, far more than my cancerversary, signaled that it’s been a year since I felt “normal.” Even knowing I had cancer in my body, I still felt whole. I still felt like myself. Once the scalpels invaded my skin, once parts of me were carved up and discarded, replaced by synthetic prosthesis, I became something… someone… else. I think the question still looms, who or what have I become?
The obvious response, given the context of this blog is, “SURVIVOR.” But I’m not so sure about that. “Recoverer,” yes. I recovered from surgery. I recovered from the infections.
But I didn’t survive – at least, I’m not sure that I have. My breasts didn’t survive. My hair didn’t survive. My feelings and senses didn’t survive. Most of the skin in my chest area survived.
My strength didn’t survive. My cycling and athletics haven’t survived… not yet. My ability to find ways to bounce back better than before hasn’t surfaced, yet. I’m struggling to do it.
And I can’t find a way to embrace the new boobs, yet. Perhaps if my nerve endings were still functional, I could. Or if everytime I flex a muscle, they didn’t ripple and bounce around like a freakish body builder, I might be able to start. They still don’t look like breasts. One is larger than the other, one is fuller than the other, the horizontal scars are still visible, and have left some strange sculpting. They nipples still look like Frankenboob. Forget the cancer: If I had breasts like this before, I’d be seeking reconstruction.
By no means am I saying that Dr. Nordberg did a bad job – not at all! He did a great job, given what the task at hand was. The left side that is fuller and bigger is that way because of the scar tissue, etc – it was problematic from the beginning. The right side just settled the way that it did. And he’s trying to fix things, but this is going to be a long time until it’s close to where I envision being able to begin to accept them as being a part of me.
And my hair, oh, my hair. Yes, I’m not bald. But bald was a “cooler” look than what I have going on now. I look like a retarded Little Orphan Annie. Yes, it’s great that I have the curls that I paid (well, my parents paid) for when I was in high school and didn’t quite get. But they don’t go anywhere. They curl in on themselves and don’t grow down. It’s like having a head of ingrown curly hairs. I touch my head and I feel a sheep, not my hair.
So, neither my breasts nor my hair feel like “me.”
I don’t know.
One year later, and I still feel so far away from really recovering, let alone surviving.
For my personal journey, the cancer was the easy part – it was caught before it caused any pain. Yes, I survived the cancer, I suppose. But what I’m really struggling to survive is the surgery, the treatment, the chemo, the after-effects, the recovery, the butchery.
Yes, finding veins has been a struggle, sadly, even after having had good veins for blood donation all my life. But I really don’t think I WANT a port. 🙁Continue reading
Looks like I will be here until Monday. The infection is responding to the antibiotic cocktail, but we’re going to make sure everything gets the all clear.Continue reading
When in doubt, tell the truth. – Mark Twain
After a couple of hours, it was setting in that I really had cancer. While I can keep secrets that could ruin surprises for friends, I’ve never been very good at keeping secrets about myself. I’ve always been an open book. I have friends who have found that trait to be very off-putting, but the fact is that’s how I am. I wear my heart on my sleeve.
As a LIVESTRONG Leader, it’s been drilled into my head that cancer is nothing to be ashamed of – there should be no stigma attached. I’ve been open about so many things in my blog, and I felt that this should be no different. So I wasn’t. I wrote a blog about it. I passed it onto a friend at LIVESTRONG Headquarters who asked me if she could share it with the staff and others. I agreed. And it was shared. Now, it was out there. If I went into denial, there’d be others to remind me. And my obligation of the cured was starting early. I was going to share my story. I was going to make this real, not wrapped up in a pink ribbon with glamorous photos. I’d tell it like it is.
Within hours, I’d received dozens of Facebook messages, Tweets, emails and other notes of support from friends all over the world. And, within those same hours, I was being scheduled for test after test. My calendar was out of control. I had just started a new part-time job working for Danny’s Cycles, I had my full-time job, I was just starting up my Mary Kay business again, and now I have doctor’s appointments, scans, consultations, more doctors than I ever anticipated knowing in a lifetime. And I still hadn’t told my parents and my children.
Yes, I know. How selfishly stupid was I for not telling my parents and children before blogging about it? But, you see, neither they, nor their contacts, read my blog or follow LIVESTRONG.org. But, I had to do it. At least, I knew I had to tell my children. I didn’t want to tell my parents. It’s the ugly truth, but the fact is that I didn’t want to deal with their insanity, specifically, my mother’s. Flashes of when I was delivering my daughter, and her criticism that I’d chosen to have an epidural, and the fact that she denied my request to bring my son back in time to cut the umbilical cord kept running through my head. The reality was that she would drive me insane with judgements and her opinions of what my choices were, and I didn’t want to deal with it. I asked my cousin to tell them, but she chose not to do it.
So, I picked up the phone and told my dad, who told my mother. And then I arranged dinner with the kids at DiNardo’s Ristorante in Pound Ridge, NY.
Tell the children the truth. – Bob Marley
At an early age, it became painfully obvious that adults had a despicable knack for hiding the truth, especially the uglier truth, from children to “protect” them. What those adults don’t understand is that such consipiracy hurts the children, sometimes scarring them for life, and has less to do with the well-being of the children, but avoiding having to figure out how to explain difficult things. It’s to placate the adults, not benefit the children. My grandmother died in 1980. I was to be at the funeral, with my cousin, so we could say goodbye to her. She had fought cancer, and her time ran out. She was the most revered adult I had in my life. She was everything to me. I distrusted other adults as it was, and, at her funeral, that distrust was confirmed. Someone outside the family decided that it was inappropriate for my cousin and me to be at the service, so she tricked us into going to a classroom upstairs in the facility and locked us in for the duration of the funeral. Our parents didn’t realize this had happened, and no one came to get us until after the service was over. We missed everything. We never got the chance to grieve, to see her casket, to share our loss, etc. We missed it all. And neither of us have gotten past that.
I wasn’t going to lock my children in a closet. I wasn’t going to do to them what was done to me.
The good news is, as I’d been a LIVESTRONG Leader for a couple of years, they had plenty of exposure to what cancer is, survivorship, etc. My son had gone to the LIVESTRONG Challenge in Austin the year before, so he’d seen, hands on, how many make it through the other side. I just had to convince them that I’d be one of the many collecting the yellow rose with the “I Am a Survivor” bib on my back, and they wouldn’t have to wear the bibs that read, “In Memory Of.”
Once dinner was ordered, we all sat down, and I told the kids that I’d been diagnosed with breast cancer. My son asked me if I was ok. My daughter’s eyes began to well up with tears and she hugged my right arm and pressed her face under my arm. I stroked her cheek and told her it was found really early and not to be worry. I told her that I was a little scared, but I was stronger than I was afraid. My son came over and hugged his sister and told her it would be ok. We described all the riders and runners we’d watched collecting their yellow roses as they crossed the LIVESTRONG Challenge finish lines, that this was caught early, and it would be alright.
I reminded her of the Arthur episode that the Lance Armstrong Foundation did called “The Great MacGrady,” (search for The Great MacGrady in the search box on PBS Kids to watch the episode online) where cancer was described as a weed in a flower garden that needed to be plucked out, and sometimes you had to use weed killer to make sure it never comes back. I told her that in October, when we went to Austin, she’d see hundreds of cancer survivors and that I’d be joining them. I explained to both kids that I’d be having the surgery while they were at camp, but that I’d let the camp know all about it and make sure that if they needed to call to make sure that I was ok, they could. (Note: The camp didn’t exactly comply – I had to fight them to let that happen, as well as other issues related to the cancer that I should not have had to explain more than once, let alone fight repeatedly.)
By the end of the evening, though I can’t say we were “alright,” the information was given, it was being processed, and it was clear we were fighting this battle as a family. My son was going to be “Man of the House” and agreed to keep his nose clean and do what he had to do. My daughter was going to be my “Lady in Waiting,” and pitch in where she could, and I was going to fight like hell.
Look for me in the whirlwind or the storm. – Marcus Garvey
It’s remarkable how much stuff has to get done in such little time when your diagnosis comes in. My thumbs could not keep up with all of the appointments I had to make. I had to meet with a breast surgeon. I had to go to radiology. I had to get an MRI. I had to get my family to give me the family cancer history once more. Sure enough, there was a pattern on my father’s side, which meant I had to meet with the geneticist. I had to meet with an oncologist. I had to solve the conflict in the Middle East. All in, what seemed to be, a matter of days. At the same time, I was trying to make sure that I was seeing the best practitioners that I could. And that insurance would cover it. And, oh yes, try and work.
The following 2 weeks were filled with scans, tests, running all over the Stamford area from the Tully Health Center to the Stamford Hospital to the Darien Tully Center.
A quick detour about that trip. If there is one thing that I have taken away from my involvement with LIVESTRONG it is to fight like it’s nobody’s business (because it’s not) when it comes to getting what you need. You know your body better than anyone and it’s your cancer, not theirs. Even the best health professionals miss things and you, and only you, know when something is “off.” They may be able to figure out what it is, but unless you are a clinical hypochondriac, follow your instincts when something doesn’t feel right or the doctor is really not in the right. I keep kosher, which means that I don’t eat shellfish. That being said, the one time that I accidentally ate a dish with shrimp in it, and it was the entire bowl and the shrimp wasn’t revealed until the very end, I had an allergic reaction. It wasn’t lethal, but was uncomfortable. My lips and my throat swelled. Not to the point that I was in respiratory distress, but clearly, I needed to avoid shellfish. However, I’d had several MRIs using the standard dyes. As a precaution, however, my doctor decided to prescribe me steroids.
Now, I already take steroids for my under-performing adrenal system. So these are additional steroids. CVS on High Ridge Road in Stamford, gawd bless ’em, has screwed up every single prescription I’ve ever called into them. This was no exception. The instructions given to me did not match what was in the bottle. however, this wasn’t discovered until I showed up for the MRI. So I had taken less of this prescribed steroid than desired, however, I was still taken steroids additionally. Not to mention the fact that I’d never had an issue with the MRI dyes before. They told me it shouldn’t be an issue, and I went to the back to change. Bear in mind, that I has taken enough steroids to be in “‘Roid Rage State.”
As soon as I was ready for my MRI, I was told my a nurse that the radiologist decided that since I hadn’t taken the steroids as prescribed (inferring that I had done something wrong), that they wouldn’t do my MRI that day. Here’s the problem: Tests like the MRI are just a domino in the scheme of things. When one test doesn’t get done, then the rest of the dominoes fall and you have to start all over again. I had pending appointments out of state with experts, I had a string of follow up appointments, and a deadline by which the surgery could happen before the kids came home. This was not acceptable and I asked to speak to the radiologist. I offered to sign waivers. I pointed to my past records of MRIs with no problems. The nurse told me the radiologist would come out to speak to me. I got on the phone with the Nurse Navigator, my Primary Care Physician, my OB/Gyn, telling them what was happening and to get the radiologist on board. The nurse returned, and I was in full out rage state. She said that the radiologist left. At which point I blew my gasket. I mean, I lost it and I started screaming at the nurse to get this done, turn her back around, etc. I asked where the radiologist was going, and she made the mistake of telling me, “Stamford Hospital.” I said, “Thank you,” got changed and into my car and high-tailed it down I-95 (miracle I didn’t get pulled over!) and parked at the hospital.
Fortunately, my aunt had been a Lab Supervisor at the hospital for years, so I know my way around the bottom floors and backways of Stamford Hospital pretty well. As I was sure the Darien Tully staff had alerted Stamford Hospital that a roided up lunatic was en route and to expect a large, pumped up green lady with shredded clothing to charge through the halls, I decided to take every backway that I knew down to the basement level without being seen by security. It worked. A little patience and a smile, and I was inside, past the security doors. Wouldn’t you know, the first door I stumbled upon was the Head of Radiology’s office.
I charged in, smiled, as the gentleman was on the phone. He looked up, nodded at me, and indicated that I should have a seat. As he was on the phone, he looked at me up and down, nodded again, and said, “I’ve got it.” Yes, indeed, Darien had alerted Stamford about me. He got off the phone and asked, “How can I help you?” As calmly as I could, I explained what happened, and that the test had to happen today because several key appointments were contingent on the MRI results being turned over within 24 hours. I explained that I know my body, what I can and cannot tolerate, and that it was completely unprofessional and wrong for the radiologist to hide behind her nurses and not speak with me directly. He nodded his head in agreement and said, “Let me see what I can do,” and he left the office telling me to stay put. I was 100% certain that the men with the butterfly nets were on their way.
Instead, his assistant, who looks a little scared, comes in and explains that the doctor has run out to the parking lot to physically stop the top breast radiologist from leaving to come back and to perform the MRI at the Tully Center in Stamford. She asked me to hold tight, breath, and relax. She understood, as did her boss. Sure enough, the doctor returns and tells me to head over to the Tully Center for the MRI. And that’s how I got the MRI done.
Thanks goodness, the rest of the tests did not require such drastic means. In fact, though they were crammed into the few hours of the day like sardines, the tests went on as planned. Except for one…
Why there hasn’t been an update lately, more cancer diagnosis, premature snow storm, bad kitties and naughty children.Continue reading
No need to go to the hospital… but mystery swelling still plaguing me. Reflecting on well-meaning friends, but difficulty when no one responds to requests for assistance.Continue reading
Chemo is delayed even further. Am I going to be admitted to the hospital or not? Magic Eight Ball anyone?
[kml_flashembed movie="http://www.youtube.com/v/0HFXmBDW7mg" width="425" height="350" wmode="transparent" /]
(Can you tell I’m still getting used to wigs?)
Sometimes it’s not easy to be a fighter or a survivor. Others see you as being “disabled.” Not an easy stigma to fight, especially in the workplace.Continue reading
Attending the Westchester Region of Hadassah “Hand of Healing” Luncheon was touching, with a wonderful surprise.Continue reading