A timely tangent…

Since October is Breast Cancer Awareness month, i’ve been in contact a bit more than usual with other survivors. (Here’s one blog i particularly appreciate.)

I’ve learned through this correspondence that even though breast cancer is not one of my primary topics here, some readers might like to know my back story in that regard.

Here’s a detailed narrative for those are are interested…

As of six weeks from now i will be, as far as the technology can tell, cancer-free for four years.

The permanent ramifications i’m left with resulted from the treatments, not the cancer.

(I don’t think this is an uncommon phenomenon.)

So, yeah, it was breast cancer. After tracking some suspicious shadows on mammograms for several months, a biopsy provided a definitive diagnosis on October 31, 2013. Age 53. Happy Halloween!

From that moment, there was a rush to operate to remove it, of course.

Well, from the patient’s point of view, urgent decisions with enormous long-term implications need to be made at a time when thinking clearly can be difficult.

First among them… After meeting with the surgeon, i had about a day or two to decide whether to remove only the tumor (or only the one breast), and continue nearly constant monitoring in case not all cancer was caught, or in case some hadn’t got large enough yet to detect — or to go full monty and have both breasts removed. In which case, a second urgent decision must be made…

In the case of the complete mastectomy, assuming the woman wants a cosmetic reconstruction (with implants), that multi-step process is most efficiently begun during the same surgery, including the insertion of temporary implants, to be “swapped out” in a later procedure for permanent ones. (In some cases, certain conditions being favorable, it is possible to insert permanent implants right away, negating the need for the later swap-out surgery.)

“Assuming” is a key word up there in that last paragraph, because there was really no discussion of the pro’s and con’s of reconstruction, outside of any questions i might have happened to have the wherewithal, in my stunned state, to pose.

As to the mastectomy itself, aside from the brief time allowed for making it, there was a great deal of information to consider and base my decision on. But not on the rebuilding; it was assumed any woman would want that. (And i think most do — it’s wonderful to have the option! I only mean to point out that, in my case, potential downsides were not presented.)

Well, it made the most sense to me to remove as much as possible, removing along with it the need to constantly worry and continually have to keep testing what remained.

The radical bilateral mastectomy and reconstruction prep surgeries were done in one long session on December 3rd, 2013. Also during that session, a further incision was made under the arm near the affected breast to remove and test lymph nodes, in order to detect whether the cancer had spread beyond the breast.

What was learned during that operation included:

1. The tumor was larger than was at first suspected.

2. Cancer cells were found in one node of the lymph system.

3. Another tumor was found in the other breast.

4. It had not been possible to insert the permanent implants at that time.

A big upside: vindication that i made a good decision in not removing only the known tumor.

It was a difficult and painful recovery, but recover i did. Several weeks later, i had a full-body PET scan, checking for stray cancer cells, and i came up clean. Yay!

So at that point, the next steps in “standard care” are:

1. radiation treatment (using beams of intense energy to kill cancer cells)

(Yes, even though my PET scan was good, there could still be cells too small to detect.)

2. chemotherapy (using chemical poisons in the same “just in case” manner)

3. gradually adjusting the size of the temporary implants by incrementally adding fluid to them, to acclimate the surrounding tissues, and until one decides what size one wants to be. So bizarre.

However, in another upside…

Based on narrow criteria (including specific parameters as to tumor size, type, limited spread), i qualified to participate in a clinical study in progress, under which if i agreed, i would be randomly assigned to one of two groups:

a. those who received standard care — meaning both radiation and chemo (with the accompanying hair loss), or…

b. those who received only radiation, but not chemo

I could choose whether to participate, but not which group i’d fall into. I agreed.

In upside #3, i got assigned to the group who would forego chemo.

This is the only reason i didn’t need to endure gut-punishing nausea or lose my hair.

(Those occur because to chemically kill fast-growing cancer cells, other fast-growing cells, especially digestive ones, are collaterally damaged in the process.)

So in the spring of 2014, i worked reduced hours while i underwent daily radiation sessions for about six weeks. It takes a lot out of a person, and has its own difficult side effects, but afterward i gradually rebuilt my strength to do the swap-out surgery that June.

That second surgery went fine — swapping the implants was a vastly simpler procedure.

Just as i was getting back up to snuff, ready to return to work, a really bad thing happened. It was the first indication that i wasn’t going to be able to just bounce back and put this all behind me.

On the side that was radiated, the wound had become infected, refusing to heal properly due to the radiation damage. Of course, i didn’t even realize that was one of the radiation risks. I guess they can only blast you with just so much information that sticks.

An infection specialist was called in, who consulted with both the reconstructive surgeon and the oncologist, and oh jeez, what a mess — since they didn’t agree on how to proceed.

And this is the part where i speed up the story a little by summarizing that in the ensuing months, repeated attempts were made to solve the underlying healing problem. These involved replacing implants, removing just the one to allow for healing, then replacing it, then also finding that both refused to stay in place and undergoing further surgical methods of reinforcing them. Not only did this include some painful testing in between, there were further instances of dangerous infections along the way.

One of them became so severe that a special semi-permanent line was inserted into a vein (in my upper arm) so that i could administer my own IV cocktail of antibiotics at home (with a visiting nurse checking on me weekly) while having to be housebound for eight weeks.

One attempt at circumventing the radiation damage problem involved borrowing skin and muscle from behind the shoulder (the latissimus) and bringing it around front to replace damaged tissue and promote sound wound healing. The “little scar” in the back that the surgeon advised me of turned out to be about twelve inches long. The procedure did ultimately resolve the wound healing issue, but resulted in tons of scarring which led to other permanent complications. Among them are lymphedema and chronic shoulder impingement problems that include pain and limited motion.

It all sounds stupid and awful to think back on now, making me regret nearly every single decision related to trying to keep the implants. But it’s different when you’re in the middle of that road — you’ve started down that path, you take the detours as they come, with an eye toward the ultimate positive outcome. You can only grasp what a complete fustercluck it all was when you see in retrospect that your positive outcome was never coming, and you wish you’d have never tried for it.

By this time, i’d had seven major surgeries within 18 months, with 12 different incisions.

It was in June of 2015 that all seemed to finally be ok, and my sister and i planned a Got Well Party. I had a lot of friends and co-workers who were excited to come and celebrate with me.

Five days before the day of the party, i came down with yet another random infection, throwing me back in the hospital for a few days. But it was seen as a fluke, easy to come back from; i managed to get released in time, and the party was a blast! (The profile pic on my About page was taken at that party.)

When all this started, i had been at a bilingual social work job i loved for only a year. Great salary, great benefits, very challenging and rewarding. The team of about 20 in my department had mostly good working relationships, and those co-workers were wonderfully supportive through my travails.

I’d been on the job just long enough to qualify for the federally mandated Medical Leave benefit which allows 12 weeks off per year without losing one’s job for health reasons.

Two years in a row i used up my allotted weeks, and was in peril of needing more time off in the coming year. It was wearing to keep thinking, “I’m really back this time!’ and then to suffer yet another setback.

Near the end of 2015, management decided they’d finally had enough of me, even though i was one of their most dedicated workers before getting sick. Long story short, they concocted an excuse to terminate me (in February 2016), saying i had violated their absenteeism policy — on an obviously pretextual technicality.

There’s more to that story (see this post), but on top of my struggles to physically survive, no longer being capable of doing my job well and then being fired were almost harder emotionally than trying to come back from cancer. I was just devastated.

Back to 2015 though… A few months after the Got Well Party, the implants had started to become displaced for the third time. I came to hate everything about them and hated the thought of trying to make them right anymore.

I needed to give myself some time to rest my body after all those surgeries and infections, and just get back to feeling some measure of health, so i let them be for several more months.

After about a year, i finally said, That’s it — i’m done, get ‘em out of there for good. That removal procedure was my final surgery and took place in May of 2016.

I remain unadorned and much relieved.

During that intervening year, though, it became apparent that the repeated trauma resulted in extensive and chronic neuropathic damage, manifesting as constant bruised and burning sensations — especially in the ribs — along pathways emanating from the worst of the scarring.

So even before that final surgery, i was having difficulty sitting upright or standing for more than short periods, and doctors were already considering those symptoms as likely permanent. They suggested i consult a pain management program and apply for disability benefits.

I did both. A local pain clinic helped me acquire some helpful strategies for ongoing pain management. On the disability side, determinations can take years, and i am early in that process.

One of my job benefits was a Long Term Disability insurance policy that i ended up making a claim on and qualifying for, which pays ⅔ of the salary i was earning. I started receiving it while i was off on leave, and it continued after i was let go.

That insurance company conducts periodic case reviews, and the policy can pay until retirement age as long as they document my inability to work. My most recent review was last July, and entirely unexpectedly, they stopped my benefits, saying afterward that there hadn’t been enough details in recent doctor visit records.

I was flabbergasted and thrown into abject panic.

They do have a process through which to appeal that decision — so i went back to all my medical providers, asked them to update their notes with more specifics about my limitations, and submitted the updated records with the appeal.

As of this writing, i’m still awaiting the outcome. I have had no income since August 1st, and have no indication when i will have any again.

To start to wrap this up… When i got the cancer diagnosis, i fully expected to simply go through what i needed to go through and then bounce back. While my bullheadedness served me well, that wasn’t to be, as i ended up permanently sidelined.

The discomfort and functional problems make for a somewhat diminished capacity to the day, but it’s my goal to keep working at making the most of what i have.

I like to joke that i don’t *look* like a cancer survivor. My generally sunny disposition helps me keep the issues to myself unless asked.

For those facing a similar struggle, it distresses me that reading my story could be discouraging rather than encouraging. Please know i have good friends who have had quite positive and satisfactory results from their reconstruction experiences.

Serious illness and its fallout can throw everything up in the air for a while. As for where things have landed, nearly everything about my day-to-day life has changed. And in that regard i have had much work to do emotionally.

Lucky me that, even though i’m somewhat extroverted, i can enjoy the life of the mind.

Lucky me that my body is not me.

Thanks for reading.

K

 

4 thoughts on “A timely tangent…

  1. Wow – that is a STORY! I can’t imagine going through all of that! I have been surprised at all of the setbacks on my journey and dreading radiation (supposed to start sometime this week). But my doctors did things in a different order – chemo, then surgery (lumpectomy) and then radiation. The plastic surgeon I saw (when I was learning about all the options) said he wouldn’t do surgery after radiation for at least a year. So sorry about your struggles – I too try to remain positive during everything and I too thought I would just go through it and bounce back. I am learning that this journey (more than anything I have ever done) is a roller coaster. Thank you for sharing your path.

    • Thank you for your comments, Becky. Very interesting about the order of treatments and the surgeon’s one-year rule.
      Yes, it can be a roller coaster, but i’m confident you will face this down successfully. There will be stability eventually. ❤

  2. Thank you for sharing your moving back story during Breast Cancer Awareness month, Katherine. Your words really drew my attention to the challenges of your lengthy post-
    surgery treatment. So glad you’re cancer free.

    Shoji

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