Good Chemo side effects

In April 2021, I lived in the chemo rehab clinic in Freiburg, Germany. It was a life changing experience that course corrected the life I would follow after cancer. I know that I am stronger because of what I learned while there.

I cannot imagine being able to recover from cancer, chemo and surgery (a mastectomy) without that month in rehabilitation. Anyone who knows me even peripherally knows that I love to paint and draw, but it was in Freiburg where I had Art Therapy for the first time.

The painting above was a result of my playing around with the paints and the paper, to familiarize myself with what I could do. It was my first time using gouache. If you‘ve never tried gouache before, it‘s a paint that behaves somewhat in the middle of acrylic and watercolor. I enjoyed the texture and versatility very much.

My Art Therapist was Andrea Pfeiffer, a terrific lady who is in her own right an artist. In addition to helping people at the chemo rehab center, she runs her own art therapy studios in the beautiful city of Freiburg. Her insightful and quietly pointed questions about the images she prompted me to produce often had me in tears.

Every time, it was a complete surprise to me. I thought I was just painting, but she would ask me a question about a certain detail, and the answer that I would provide all on my own would shatter me. It was revelatory and heartbreaking, but absolutely necessary for me and ultimately, cathartic.

My 1st Assignment

Pfeiffer came up and first covered the left half of the painting. She asked me what I saw there.

Then she covered the other side and asked the same question. She helped me realize that the two sides portrayed different emotions that I was trying to manage.

I really didn‘t know what to expect, but had mostly in mind that I‘d be able to play with paints and talk about my feelings. That really wasn‘t it at all. What transpired was considerably more structured than that. I was guided every step of the way, while still feeling as though I was creatively free there.

“What is that?“

I answered, without even thinking about it, “Flying Nipples in Space.“ Obviously.

I found this particularly interesting, because I didn‘t realize how much the mastectomy I‘d had was so present in my mind. Clearly, it was, and beyond the simple, “Ouch, my scar hurts,“ kind of thing.

It was good for me to see that. I said goodbye to my breast on that day in therapy, and was given the space and time I needed to properly mourn that loss.

The art therapy experience was very hard work, highly emotional, and I wasn‘t the only one in the room. Even with social distancing due to covid precautions, there were typically 4-5 patients in the studio. But I also wasn‘t the only one in tears. Everyone in that room had a lot of emotional baggage and plenty of hurt to heal.

Color and WORDS

Once she realized that I write, Pfeiffer encouraged me to incorporate words into some of my paintings, using pastels. This was for me another first.

There are several layers of words, written directly on top of each other.

It isn‘t meant to be legible. It‘s meant to be an outlet.

Pfeiffer prompted me to write down the words I would want to share with someone who hurt me deeply, but at different points in time: the past, right now, and the far future.

I won‘t go into the nitty gritty of what my therapist asked me at various stages of the painting process, or what all she helped me to unveil through creating. No kidding, that would fill a volume. But you can get an idea of how cleansing and transformative the experience was for me based on the images I‘m sharing here.

This represents about half of what I created.

For me, there are some images that are even now hard for me to look at because I can see the pain there, and recall the words that Andrea Pfeiffer and I exchanged. Those are not included here.

My Pegasus Future

This was one of the later paintings I did for art therapy. I was thinking about my future, and started with a simple line across the page. It‘s the line of bright yellow. Nothing else.

I continued, and added stuff instinctively. I didn‘t have anything in mind other than My Future. It was kind of bugging me that a horse seemed to be developing. I don‘t ride. “Why am I painting this?“

Then I realized that the squiggles above weren‘t random (to me). They were suggesting wings. I kept going with that, playing with it.

Suddenly I stopped and realized what was significant to me. The first line I had drawn was a story plot line, a simple graph line for what a story should be. Every writer knows that shape.

Ride. Fly. Go forward. WRITE stories, create, and be the story you would want to read. In a time when I was feeling low and fragile, this was critical for me.

I don‘t know that anything of what I created in Art Therapy can really be considered art, but it is imagery. The images that came out of the process of creating, prompted by my therapist, were enlightening to me on a deeply personal level. I was surprised every time with the revelations the process revealed.

And it wasn‘t some flakey make-believe woo-woo, either. It was serious, it was hard core therapy, and it was essential to my healing process.

If you‘re considering art therapy but aren‘t sure, I would say set those reservations aside. Just do it. The only thing you have to lose is fear and pain. You will feel those things, intensely, but then you‘ll be able to identify them and let them go, too.

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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.