Another dance with cancer.

I started this blog with back pain. Thus the name of the blog - back(b)log. It was a blog (or a log) chronicling my experience with intense back pain. I had a lot of readers then but it didn't create the community I had hoped to. I was experiencing something awful and I wanted to connect with other people who could empathize and understand what I was going through.

Instead, I learned to write and make people laugh, of all things.

Laughter is good medicine.

Then, I got breast cancer. I didn't write about that as much and I sure as hell didn't promote my blog posts on Facebook like I did with the back pain. I don't know why I isolated with the breast cancer. I remember the things I told myself back then but I haven't had any therapy about it so I'm not sure why, exactly, I was so intensely private about it.

I figured if anyone read what I wrote, then fine, but no one ever commented or said anything to me about it. It wasn't one of those viral stories of resilience and bravery except only to me and those who are closest to me and that was fine.

For whatever reason, I glanced at the last two posts on back(b)log dated January 6, 2022, and February 20, 2022. The January entry celebrated the start of a new year and a hope that after six surgeries related to breast cancer and reconstruction, that I would have a surgery-free year.

It was not.

The February entry celebrated the passing of six months since my last surgery. 

In the time between the January post and the February one, I had found a lump. This time, in the back of my right thigh. By May, it was the size of a baseball.

But in February, the lump was small and I didn't have a diagnosis which didn't come for another five months. It was undifferentiated pleomorphic sarcoma (UPS) - a rare, aggressive type of soft tissue cancer. In July, I started radiation. In October, I had my seventh surgery in three and a half years.

I am now over two years cancer free. I had zero surgeries in 2023 and 2024 was the first year I didn't drain my HSA account.

Am I anxious about it coming back? Some days, absolutely. But that's part of why I walk so much. I used walking to get ready for all those surgeries and I walked to help in my recovery from them. I also walk for my mental health and to manage stress.

It's just ironic to look back on this blog and see how I was celebrating survival just as I was in the process of discovering I had cancer again. But life goes on and I'm part of the living so that's what I'm celebrating now.

Six Months

 It's been six months since my sixth surgery. All's well so far.

Off to a good start

 One week into the new year and all is well, boobwise. I had an MRI the last week of December and that came back "all clear." So, there's that.

I've had three years of surgery during two years of COVID. I would just like one year off for good behavior. (At least!)

I'm looking at you, 2022.

Surviving

 I fired my plastic surgeon on Friday. It was my third post-op appointment and everything continues to be healing just fine. I learned (only after my sixth surgery) that the first three follow up appointments are free if completed within 90 days. It was said as an aside, not a statement of policy. I've paid a lot of money to this doctor because this wasn't made clear earlier. I insisted that this last appointment occur before the 90 days expired. Sorry to be a pain in the ass, but y'all have been a pain in my boob. And my wallet.

He wants to do more. He is, after all, a plastic surgeon. He reminded me, as he does at every meeting, that it's a woman's prerogative to change her mind and asked if I had changed my mind about additional plastic surgery. I declined saying it (the results) were good enough and I wanted to be done. 

He seemed to understand and acknowledged that it had been a long road for me. He wished me well and told me to say hello to Hubby and then asked his assistant to book another follow appointment for six months from now.

I told him no, this was the end of the road for me. He didn't try to talk me out of it. If he had any concerns that I needed continued monitoring, he did not express them other than an recommendation to follow up with an oncologist. (I tried but getting medical records proved to be such a hassle that I'm putting it off until the new year. However, I have made an appointment with my GP and we will make a plan for follow up care for the rest of this year: either a mammogram or an MRI.)

I have come to like this man but it hasn't erased everything I've been through. Just in my time with this doctor, I've had three surgeries, miscommunications, appointments when I've been kept waiting for over an hour, billing errors (still unresolved), debt collection - and all of it during COVID when Hubby couldn't always be at my side.

I'm 2.5 years cancer free. I'm not a survivor, I'm surviving as best I can. And that's all any of us can do.

Pink

 

Cancer is Big Business

That was the opinion of a woman on Facebook who vented that anyone who wanted to pay $35 for a pink t-shirt just to parade around for cancer awareness was just wasting her money. (I refer to any number of organized events during the month of October designed to raise breast cancer awareness and, more importantly, money.) It would be more useful, she opined, to drive a woman to chemotherapy if one really wanted to help. She went on to say these fund raising organizations were not entirely what they said they were and didn't offer the services they really said they offer.

She wasn't necessarily wrong. I would have re-posted her comments here except they've been taken down either by the author herself or the Facebook group's organizer (organizing a team of walkers for such a fundraising walk.)

Cancer is a big business. Surgeons, hospitals, medical equipment companies and their sales reps, pharmaceutical companies and reps, etc., There's a whole non-medical world seeking to profit as well (well intentioned or not). Some would call them wholistic healers; others would call them reckless scam artists. Some are legitimate; some are not. The problem is, the patient has to sort all this out in a pretty short period of time right after she hears the word "cancer."

I don't know the woman who posted this but maybe she was hurting. Maybe she was still near to her breast cancer experience. Maybe she got burned. Her post wasn't hostile but it was angry. 

I feel for her but I bought the $35 t-shirt anyway. I also checked out the organization for this particular fundraising walk and felt comfortable enough to donate more. I haven't volunteered to drive anyone to chemo yet but I did download the application to donate time to said fundraising organization.

It's not much but maybe someday we can accomplish two things with all this awareness. Eradicate cancer and the big business that goes with it. 

It can make you wonder if one group is working against the other.

Vitality

I read an affirmation suggesting that I imagine my cells as warriors that nothing could penetrate. Well, I know that's not true. I came across this card much earlier in my journey, maybe even before my mastectomy. I loved the idea of warrior cells doing battle against the cancer in my body. I tried to visualize  it and thereby make it so.

The warriors didn't get the message.

The subject of the affirmation was really about vitality. Verve. The energy to live. Manifesting that energy, if you will, into healthy cells. A healthy mind and body.

That's where I find myself today. I'm done with this cancer bullshit. I'm done griping about my insurance company. It's time to let go and get on with it. It's time to be grateful for the rest of me, the healthy, un-diseased vital parts. I'm even grateful for my frankenboob. It's been a long journey but a marvelous and beautiful testament to science and to healers. I wouldn't wish it on anyone but I can be grateful that I made it this far. I have to acknowledge it could have been much, much worse.

As for the warrior cells, I am imaging them in my niece, praying that these miraculous cells do indeed exist, that her surgery will not result in amputation. Fight, cells, fight! (Different cancer, different body amputation.)

In the meantime, I'm signed up for one of those cancer walks that are promoted every October. I did one a couple of years ago and was congratulated on being a survivor. I was three months post-surgery at the time and didn't feel like a survivor. I wasn't ready to celebrate survivorship. I was still getting used to my form, my new self image, the idea that I had cancer in the first place.

I'm ready now.

The purpose of the walk is to raise funds for the Desert Care Foundation which does not conduct or fund cancer research. Their mission is "to help pay for cancer care for local residents who need financial assistance." I think that's worth supporting. I don't want anyone, regardless of their ability to pay, to have to fight to get coverage from their healthcare provider for breast cancer treatment and related services. I want to help those who need help paying for what insurance doesn't cover. I hate hitting up family and friends for fundraising (which makes me a terrible fundraiser) but if you're interested, this is the place to donate.

By the way, my niece has a Go Fund Me page. She elected to get some treatment in Mexico which is not covered by insurance but she will also have care in the United States which will undoubtedly come with a sizable deductible.