My Chemo Rehab ART Therapy

If you haven’t seen me in person for a couple of years, you might not recognize me. I’ve changed quite a bit.

Below is a picture of me before the pandemic, before I got cancer, before I was faced with a family crisis that is today still unresolved. Basically, before the cack hit the ventilator.

October 2018

That month in particular was very important to me. It marked several points of transition in my life.

I attended the Frankfurt Book Fair, which I love to do. I’d been there before, but health issues had kept me from going for a couple of years. In 2018, I felt strong enough to attend again. The fair is very exciting, but for someone whose health isn’t optimal, it’s also draining.

The event is the largest international book fair in the world. Being an accredited blogger means that I get a Press Pass for that event. I had access to secured rooms and that made me feel like a super spy!

Shortly before, I got admitted into an exclusive writer’s convention hosted by a literary agency. It meant that in 2019, I would be flying to America to meet several editors, agents and fellow writers.

Plans to visit London and Stonehenge for the first time ever were in the making (and it happened, 2019) and I had just gotten a pay increase as a teacher.

In June 2020, in the midst of the pandemic lockdown, I was diagnosed with breast cancer. Doctors told me that it was the most aggressive kind of tumor, very rare, and that it had already reached Stage Three. Chemotherapy was a must.

September 2021

This is me at the hospital where I’ve been treated for breast cancer since June 2020. Hanging on the wall behind me is a print of one of my paintings, on metal. It’s in the waiting room of the Oncology Department. This was a very special moment for me.

Read More about the painting RIGHT HERE.

From the first moment I’d found a small, strange lump to the meeting when my doctor told me the biopsy results, I could feel the tumor getting larger and hotter. It was burning me. In talking to fellow cancer patients, I’ve learned that this is unusual.

Typically, women don’t feel their tumor(s) at all. Breast cancer can be sneaky and that’s why regular checks with a gynecologist are so essential, especially for women who have breastfed.

July 2021

This is me the day I got my second Covid-19 vaccination. It landed on the anniversary of my first chemotherapy session, July 28, 2020.

People ask me why I celebrate the first day of chemotherapy. I do that because it marks a time in my life where I endured so much, so many things that I never would have thought myself capable of surviving.

But I did survive it. It’s a day that’s currently more important to me than my birthday. Maybe when I’m over 100 I’ll feel differently about that.

You can see my hair is growing back pretty well at this point, and it’s curly! And also rather white! That tank top is kind of significant too, because it’s one I purchased at a clothier near my chemo rehab clinic in Freiburg.

It was at the rehab clinic that I started wearing make-up again, daily. The experience there was actually extremely social, which was especially helpful to me. Being around other cancer patients was wonderful, because it meant I could talk freely about what I’d been going through without scaring anyone.

It was also super important to just be around people again because while I’d been going through chemotherapy, we were in a lockdown. The best part of having cancer during a pandemic lockdown is that most people are wearing a mask. That’s actually really important to someone who’s getting chemo because the immune system is just getting hammered.

April 2021

This is me at the Chemotherapy Rehabilitation Center in Freiburg. I was starting to feel better here, as at this point I was done with chemo and surgery. You can see my eyebrows are coming back.

At that time, it was still quite difficult for me to move my arm (due to the surgery). Actually, there was a lot that I couldn’t really do. The chemo caused nerve damage in my hands and feet, so I was very clumsy and movements were unreliable and weak.

I could not curl my toes, for example. It was painful and difficult for me to bend my fingers. Stuff like that.

Learning how to move, how to do any kind of sports again without hurting myself, was essential to my recovery. At the clinic, I was able to learn all that. I wouldn’t be doing so well now if it weren’t for my experiences there.

Read More about my rehab experience RIGHT HERE.

Chemotherapy made all my hair fall out, of course. But once it grew back, it came back curly and considerably more white. As a result, I could easily walk past people I knew without being recognized until I said something.

February 2021

This is me after I got to come back home after my mastectomy.

While my hair started coming back much sooner than I expected, certain bald spots were still obvious.

You can see in this picture that my face is somewhat swollen. It felt strange, a little as if I’d been to the dentist.

It was a side effect of the surgery (actually, the drugs needed for that surgery), but more than that I just don’t know.

Most of the time, I only took my picture if I felt like I could manage a smile. But there was one time where I decided to photograph myself feeling miserable (just below). I wanted a reminder, something to mark a low point as exactly that: something I would overcome, and where in the future I could look back at it and say, “I overcame that.”

I did not know that I would be able to ever do that, but I did hope. I think that’s significant, that pinch of hope.

February 2021

Ugly, right? Brows: all gone.

So this is me doing a pretty good job looking like a Sith Lord. I had definitely embraced the Dark Side here. Fear, doubt, anger – all that.

It’s me before the mastectomy. This was a bad day, though nowhere near my lowest point. I’d had considerably worse days than this. But on this day, I was extremely afraid of the coming surgery.

I felt that absolutely nothing in my life was right, nothing was going well at all. Everything sucked. This was of course not true and I did realize that I truly did have a lot going for me.

I was able to get the mastectomy that I needed. I had family that was supportive of me, and friends who sent me funny messages to make me feel better. All in all, I had it pretty damn good.

But I can forgive myself for the dark days. I felt like crap and I was in a lot of pain – pain of every kind there is. I think it’s ok to own that. Pretending there’s no reason to be angry is also unhealthy. I had reasons.

Wigs were absolutely a MUST HAVE for me. I was completely bald for about 9 months. I mean like an egg. I had this great idea of filming a short story where my bald head could have a starring role as the Far Off Planet, upon which small toy-characters would enact a plot.

It was my dream to do this for my niece, as she had sewn for me a little giraffe toy, Ginni Pelosi Giraffi. But I couldn’t gather the energy to do it. I was just so sick so much of the time, it took a lot out of me to just exist. I was very busy with that. Full schedule.

Making even a short film does take time and energy. I’m still bummed about that. Missed my window to get my noggin on film!

What I was able to do was to doodle on my iPad. Sometimes I could manage some painting, but that required more energy, and less feeling like I needed to vomit. But it’s during this time I started creating designs on RedBubble. It was fun being able to share my artwork on a public platform and to get it produced.

Browse through those designs on my RedBubble PROFILE HERE.

I could not write fiction. Fiction is far too demanding and my brain could not find words – not in that way. I did try. But more than sit with a pen in my hand? Nope. That’s as far as I got. Chemo sucks.

I always wore a hat of some sort with my wigs, otherwise I just looked like a transvestite. My era of wig wearing was mostly in 2020. I had fun with it, playing with different looks. All me, just different aspects of me. I could have teamed up with Sherlock Holmes, no problem.

January 12, 2021

This is me getting one of my last chemo doses. As I recall, I was thinking at the time, “I look pretty good today.”

I look like hell, in fact. But as the chemo phase came to an end, the toll was obvious even on a good day.

Interestingly, my hair started to return before the treatments stopped.

But then my eyebrows finally gave out. They held on for quite a while though.

I went through two courses of chemo cocktails. First one cocktail for a few months, and then another cocktail for several months.

The longest chemo session I had to have was close to seven hours. A short session was about three hours.

October 2021

As I write (October 4, 2021), this is the most recent picture of me. I’m 100% cancer free!

I’m still going through antibody treatments. They’re pretty ok after chemo, really. Just a needle in my leg for ten minutes, a blood test and I can go home. Nothing like before.

Though the treatments do have chemo-similar side effects, they’re much lighter. I’m lucky here too, because my doses will be finite. They’ll end early January.

I’ve got plans again (other than: don’t barf) and I can write fiction again. It’s a big deal for me. A really big deal.

I still have nerve damage, but I have physical therapy and I exercise daily to help my body heal.

I’ve decided that I won’t be getting my breast rebuilt. For me, it just isn’t worth it, but it wasn’t easy for me to make this decision.

Read More about my reasons behind not going through reconstructive surgery RIGHT HERE.

In the picture above, you see me posing with a bronze statue of a woman’s torso. Its title is straight-up: “Torso.” No frills there. As a woman who’s had a mastectomy, it strikes me that it isn’t unusual to see statues of women without heads, without arms, without legs. So I posed with her. I let her borrow my head and arms, and she gave me her two perfect breasts.

I doubt very much that this was the artist’s intention, but it was a lot of fun for me. There are a slew of pictures of me with this torso statue. I enjoyed pretending that she, a work of art, and I were sharing our body parts. Pygmalion with a twist, a major twist.

Then my knees started to get sore from getting up onto the pedestal with her and it was time for us to part ways. I tell you what, I think I got the better deal.

As a woman who recently kicked cancer (still in antibody treatment stage), there is one question I’m asked the most.

Why have you chosen to not get a boob job?

Lots of reasons, actually. I strongly suspect that if people really knew what’s involved, and what the results would actually be, they’d probably say, “Well surely, you’re not going to get your breast rebuilt, are you?” Because the process is really painful and lengthy and the results, even the best possible results, are not that great. 

One of the – I think – most common misconceptions about a mastectomy is that it’s like plastic surgery. A lot of my friends were under the impression that getting a mastectomy was akin to getting a free boob job, and that the rebuilding of my breast would happen during the same surgery. But that isn’t what happens. 

There is absolutely no shame in having a misconception about something and breast surgery is no different. Before I got breast cancer, I knew almost nothing about it!

Most people understand that the mastectomy is really hard. And it is. It’s an amputation, which is physically painful all by itself, but it’s also the removal of a clear and significant symbol of my being a woman, so there’s this emotional aspect of having a breast taken away.

My Mastectomy Experience

The mastectomy requires being put under. Afterwards, you wear a tourniquet and have tubes for drainage coming out of you, and an IV drip for pain. It does require one to two weeks in the hospital, and while the external scar heals in a manner of weeks (about six for me), it takes several months for the internal tissues to heal (eight months, usually more).

I have to say, being put under was for me very frightening. I didn’t know if I’d ever wake up again. So it was very present in my mind that going to the hospital to have my breast removed might be the last thing I ever did. Once I just resigned myself to that possibility, it was actually easier for me to be calm. I was on the slab, being wheeled towards the bright lights, thinking, “This might be it.” Then the drugs kicked in and I was under.

If you’ve seen The Matrix, it’s much like when the mirror is running up his arm. I felt like something was sliding up my arm, to my brain and I was instinctively responding just as Neo does. I stretched my arm out and pulled my head back, trying to keep my brain away from it. The last thing I heard was one of the male nurses say (in German), “No, don’t fight it, just-.” That was it.

When I woke up, my doctor was behind my head, pushing my bed through a hallway, jostling my shoulder. “Wake up, now. It’s time to wake up.” I did not remember any dreams, but I did sense a passage of time. I felt the lost time, just as if I had been napping.

The recovery from surgery is no small feat. It’s quite painful and once you’re strong enough, it does require physical therapy so that you don’t develop other, new problems, like a hunchback or an atrophied arm, or limited movement that becomes permanent. 

Breast Reconstruction

The breast removal is one surgery, but to have the breast rebuilt, that process requires four more, even more painful surgeries. I would need to be put under four more times, I would need to live in the hospital four more times, go through physical therapy four more times.

One of the surgeries requires that part of your body is removed, so they can use that as material for your breast. Most often, they take part of the ass. Because I’m large breasted, it means my ass would have a large dent in it, a permanent one, and by the way – that Ass Dent is something that makes sitting uncomfortable for many women who get this surgery, and that pain lasts for the rest of their lives. 

I’m a writer and I doodle. Sitting is my THING. If I can’t sit and write, or sit and draw, I’m in serious trouble. I also sit and think, sit and eat, sit and talk, etc. I sit. I need to be able to do that without pain, without discomfort. I do not want to go through physical therapy just so I can sit and not need drugs to do it.

All that for a lump of flesh that will not look the same as a real breast, will not hang the same and it will not feel the same. It will be numb, with no sensation whatsoever. Not ever.

I don’t need any of that. Being put under isn’t good for the body, but it also isn’t good for the brain. I need my brain. 

My feeling here is that I need a fake breast about as much as I need a hole in my head. (Old American Saying, that one.) Maybe even less than, really, because I could use a little ventilation sometimes. Ahem.

How Passersby Respond to My ONE Breast

I have only one breast. I’m not afraid to show that. I don’t have a prosthetic breast either, because I feel silly with one, like a little girl padding her bra. Most of the time, people don’t even notice.

Truly, people do not see that I have only one breast, most of the time. I have a size E cup. That isn’t small.

When they do notice, it’s a very interesting thing for me to witness. The process of first observing and then coming to understand what they’re seeing is something I can read in their faces. They first glance and then – they take a second look, What did I just see there?

And in that double-take, and trying not to stare, they think, What the hell is that? -because there’s this strange lump on my body. So they take a longer look, and they realize that the strange lump on my body is actually a breast. The strange swollen protuberance is actually the normal part, it’s my breast. 

Then they realize that I have just one breast, and after another second or two they realize I must have had a mastectomy.

Then they realize that a mastectomy means I had breast cancer.

And then they look at my face again. They then see that my hair is super short, not quite long enough to have bangs, and they register that, and they see, truly, that I have recently gone through cancer treatment and that I am a cancer survivor.

And then they smile. 

And because I can see that thought process, what’s really clear to me is that – my NOT hiding my amputation is actually a good thing. We talk about breast cancer awareness and wear pink ribbons, but people aren’t aware, really. As I say, I was hugely ignorant before having my own experience with cancer.

I think a huge contributor of that is that too many of us choose to hide what we experience. Not just cancer or breast cancer, but just any negative or difficult life experience.

We don’t talk about it, most women DO get reconstructive surgery and according to my gynecologist, almost all regret it. For myself, I have yet to meet a single woman who felt that the reconstructive surgery was worth it. Every single one has said, “If I could go back and do it again? I wouldn’t.” 

Choosing to not have reconstructive surgery wasn’t something that came quickly or easily to me. Many doctors have asked me, “So when will you begin reconstructive surgery?” Not IF, but when. I think that’s significant, because the way we talk about a thing is a direct reflection of how we think about it. It’s part of us.

What My Husband Says

It was my husband who reminded me that the Amazon Warriors would cut off a breast in order to be better archers.

That idea appeals to me!

I’ve always wanted to learn archery. So as soon as I’m strong enough, I’m going to take that up. When I explained this to one of my psychologists, he said, “But you could learn archery with two breasts.” I wanted to kick him.

What My Gynecologist Says

There’s only been one doctor who was actually relieved when I told her I wasn’t going to do it. My gynecologist. 

When I told her my decision, she was downright joyous about it. She told me that she sees SO many women get it done and really, really regret it. It was her strong recommendation that I NOT do it. 

She also said that especially for any woman over fifty, which is of course most common as far as breast cancer patients go, the surgery leads to lifelong pain. Every time they sit. This really got my attention. 

But of course most people don’t know about all this because – really, where are all the one-breasted women? Where are they? We know that breast cancer is common. But where are all the women who have had a breast or both breasts amputated? They’re missing, vanished from our sight. Made invisible.

What My Friend Celeste Says

“Be kind to yourself.” These are words a dear friend of mine, Celeste Bradley, told me when my chemotherapy treatments began, and she continues to ding that bell for me whenever I need a reminder. It really helps me to keep this in mind, that I need to be patient and that I need to be kind to myself. 

There can be a lot of healing in simply sharing our personal stories with each other. We are, after all, very social animals. Talking is how we relate and build relationships.

June 2020, my life changed in a lot of ways, but really – I think that was the case for everyone. It was the midst of the first pandemic lockdown. I was going through a family crisis, one that remains unresolved and part of my daily life. But June was when I was diagnosed with breast cancer.

It’s a strange thing when you’re told for the first time that you have cancer. You take in the words, “I have bad news, I’m afraid. The mass of tissue we sampled is indeed a cancer, and it is a kind of cancer that could end your life. But we will do everything we can to…” and then you just don’t really hear words anymore. Vague echoes drift around your head, bounce off the walls and nothing touches you.

Deep down, I already knew I had it. The particular type of breast cancer I had was extremely rare and aggressive, so from the first gynecologist visit to the mammograms and almost immediate biopsy, I could feel the tumor growing. It was getting hotter and bigger. I could feel it grow from about an inch to well over three inches within weeks.

Time to Rethink

I think most people agree and nod and understand that facing death makes you reevaluate your life. There’s the accepted wisdom that ”you don’t know what you’ve got until it’s gone,” even if what’s going is your life.

When 2019 was coming to a close and I listed all my new year resolutions for 2020, a complete collapse of everything I had built in my life was just not on my radar. I didn’t see this level of pain coming. In fact, my overall health at that time was on the rise. I had big plans, lots of things on my list. A serious life smack down wasn’t a thing I could have foreseen, but it came.

I’m now 100% cancer free. I’m doing my physical therapy exercises most every day. I have my 10-minute antibody shot every third week and my hair is returning. The scar from my mastectomy healed all right and I’m training my body to recover from the internal damage caused by the surgery. It’s a long process. I still have chemo side effects, various things that I deal with every day, where I just do what I can to maintain and keep my chin up.

I paint when I can, draw and design when I can, and now that I’m off chemo, I can write again. Really write, the fiction writing that requires the kind of focus you just can’t pull together when you’re on chemo. Not all chemo cocktails are the same, but the stuff I was on made me feel stupid a lot of the time.

Turning it Around at Chemo Rehab

After the chemo and surgery, I was able to stay one month (April 2021) at the chemo rehab clinic in Freiburg. It changed my life. I learned a lot about what my body needs in order to heal. I learned to train repairing muscles without hurting myself. Very importantly, I made new friends in the incredible fellow cancer survivors I met there. These ladies are all quite different from me and from each other, but we just love each other and support each other (a few of the gals are pictured here). It’s great and their friendship means a lot to me.

All of us cancer survivors living at the clinic had full days, thickly scheduled curricula based on whatever we needed. I had post-op arm therapy, balance therapy, nerve damage therapies, scar treatment, heat therapy, skin care consultations (chemo severely dries up everything), various sport therapies, Fango (hot clay) kneading, one on one psychotherapy, art therapy, diet consultations and all sorts of medical seminars.

I also had Autogenes Training, or what I call my “How-to-take-a-nap Class.” Learning tricks to help me sleep has been really invaluable. I can even use those methods to help me relax.

My time in rehab felt a lot like college, actually. We patients would meet up in the halls between classes, chat it up in the cafeteria, and stay up late talking and laughing up in our rooms. Everything was up, upwards and onwards, together.

It was exactly what I needed. It gave me time to get better, and it gave me the tools I previously didn’t have in order to recover, tip to toe.

Asking Myself Hard Questions

Easter weekend at that clinic is one I will never forget, because that’s when I realized, after everything I had been through, I had changed very profoundly. I asked myself some hard questions about my life and realized I needed to make some big and difficult changes. My life was exhausting and I knew that I had a lot more climbing uphill to do.

There is a literary agency who is interested in my work. They’ve given me a code to include in my emails so that anything I send them gets prioritized. But I have never taken advantage of that code, never sent them anything even though I could have.

I asked myself, “Why haven’t I sent anything to the agency?”

This was for me a very hard question, one I now know I had been avoiding for well over a year. I had worked very hard (read: very, very hard) to make that connection with that particular agency. It had been a long and hard won effort. But it didn’t matter.

I knew they weren’t the right agency for me and it wasn’t until I was at the chemo rehab center that I could face that. Creatively, I just didn’t jive with those particular agents, which meant a solid working relationship with them wasn’t really possible.

Instead of looking for another agent all over again, I had – simply – stalled. I stopped completely. The COVID pandemic hit, I was smacked with a family crisis, and then I got cancer. So sure, there were some serious, valid reasons for my writing to have stalled. No doubt. But I could have done something and I didn’t.

It was clear on Easter that the only thing I could do was search for another agent. Square One, all over again.

Another Big Truth

It was also clear to me that I had to seriously rework the manuscript for my novel. I had various manuscripts ready to show an agent, but only one novel, my first so far. I realized that there were inconsistencies in the story and that ultimately, it was because I wasn’t being true to myself.

There were whole swaths of the manuscript I had written for someone else, not for myself, and it caused this terrible lack of cohesion. I knew I needed to correct that and I knew it was going to be a monster sized correction. Basically, a rewrite. Again. As one fellow writer once remarked of this type of writing, “Not a new dress for the old doll, but a completely new doll. Maybe a teddy bear, in fact.”

What Happened Next

I couldn’t work on the manuscript while at the clinic. That was out. I didn’t have anything with me. So I did what I was able to do. I put on my face mask and went down to the clinic lobby, to the dark corner and four clunky computers with internet access. It was so empty my footfall echoed.

I disinfected the keyboard, then my hands, and started searching through literary agencies.

Incredibly, I found the profile picture and name of a literary agent I once met at the International Book Fair in Frankfurt, about one year before the pandemic broke. She was terrific. When we met, I told her about how I was going to fly to America, to meet this other agency who I thought was a perfect fit for my writing. She had a little time before her next meeting, so we talked about family, movies we like, authors we like and why. She recommended I read some books that weren’t yet on the market, certain titles to watch for and I’ve since read them all.

It was that moment, staring at a blinking monitor, my hands resting on a sticky keyboard on Easter Sunday that I realized she should be my agent. At least, she’s the agent who’s actually going to see my manuscript, the one I’m rewriting these days.

I hope she loves it, my novel. It’s my best writing to date. I hope she will feel as I do, that we would make a terrific team. If not, well. I’ll brush myself off and start from Square One again. What else?