Karla

When you get diagnosed with cancer, you meet a lot of other people who have or had cancer. It’s like another family, and we are all connected through our struggles, through our mortality, through our fears, through our perseverance, through the change and uncertainty that cancer brings.

For many people, cancer is a one-time diagnosis. They get treated and it doesn’t recur or metastasize. Others start off with a stage 4 diagnosis, or have a lump removed and then months or years later find it’s spread to an organ.

Sooner or later we lose someone to cancer from this new family. When one of these new family members dies, it’s a loss for all of us.

Karla was one of my radiation techs that I saw every day for six weeks. She was a breast cancer survivor and a constant reassurance on radiation days. She had the bedside manner that you wanted next to you when you were in that very vulnerable position on the radiation bed. She was comforting, smart, and sensitive. Your cancer treatment team isn’t there to be ‘best buds’ with you and there are only a few people during my treatment that I could say I truly connected with beyond the patient-caregiver relationship. Karla was one of them.

I saw a lot of robotic doctors and nurses while I was sick, people who say mmm hmmmm mmm hmmmm without really listening. Karla was real. She was transparent. She had compassion and a deeper understanding of exactly what I was going through because she had been down that path. She saw herself in me. I saw myself in her.

When I went back to my radiation oncologist for my six month check up, Karla was gone. She had died the week before from cancer that had come back with a vengeance. When the nurse told me all that would come out of my mouth was “No!” and “Why??” and “I don’t understand.” I couldn’t wrap my mind around the fact that the Karla I knew had died from her cancer. The grief I felt as I drove away from the hospital was overwhelming.

I didn’t know Karla well, but it was like I knew a part of her well. Sometimes there is something that connects us to someone else that is indescribable. I was in the middle of treatment, so I don’t remember the things we talked about or the things she told me. When the radiation nurse told me that Karla had died, I couldn’t remember the details Karla had shared with me about her own life. I felt guilty about that, and selfish. And betrayed: by the lack of details in my memory of her, by life, by death.

Only a few weeks passed between Karla’s cancer relapse and her death. I knew Karla had dogs, not children. I knew she was smart, compassionate, and present. I knew she was sad when she talked about cancer, whether it was mine or hers or someone else’s cancer. I knew she had a husband that she loved who loved her supported her. When I visited her obituary page, I saw how many other people loved her, too, like I did.

We’re all so caught up in our own lives, and in the what ifs. I was just trying to get through treatment, and Karla was there for me. I looked forward to seeing her every day. For all I know she had already been diagnosed with Stage 4 cancer. I never considered asking. I thought she would always be there.

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How do you think I feel?

I hate this. I hate radiation. Every day, five days a week, I lay on a table for fifteen minutes and think about having cancer. And every day, I’m flooded with emotions. I am sad. 

How do I know this is going to keep the cancer from coming back? How do I know that it’s not already in my liver? In my brain? In my lymph nodes? As long as I have to have daily radiation, I’m reminded of all of my fears. 

We opened our new business this week, a restaurant and bakery. So many people are coming in. I don’t know all of them, but they know me, and they know I am being treated for cancer. They know Amelia and I because we owned a bar until recently, and many of them have also been following my blog. My hair is growing back a little, but it’s still obvious that I had chemo. I feel exposed. 

All of the above was written by Amelia. I wanted to know what she thought I was feeling so she wrote it from my perspective. She knows me well enough to be able to write as me. Almost.

I don’t hate radiation, but hate is a word I carelessly use. At my core I just don’t believe in hate.

Radiation sucks. I don’t like it, and yes I think about cancer while I lie on that table listening to some sappy soft rock song piped in. Today it was Time After Time, Tuesday it was Just Breathe, Monday it was Landslide.  -sigh-

Cancer has brought out the sadness in me. I have known sadness too well in my life. Right now, cancer is about loss: body part, hair, any sense of control. Loss, left unchecked, can sometimes turn into sadness, but not always. (I lost my credit card the other day – I was not sad. Pissed off? Yes.)

Yes, I think about cancer recurrence. Aches and pains have a whole new meaning to me now. My neck hurts. Is it in my lymph nodes? My ribs are sore. Is it in my bones? I see a bright spot in my vision. Is it in my brain? Then I forget about it, because we’re busy starting a new business.

There’s yet another level of feelings about cancer when you’re opening a restaurant. We are already fairly well-known in our community, and I’ve been very public about cancer. There are a lot of people that I don’t know who are genuinely concerned about my well-being, asking questions – just being really real and it hits me hard sometimes. I found myself in the restaurant kitchen with tears in my eyes a few times this week. The caring was too much. It shined a light on me that I am not quite ready for.

I feel like I was partially erased during the past seven months. I disappeared from the public view, and now I’m back. And it’s different. I’m different. This is what starting over feels like.

 

 

 

 

I’ve been nuked

Every road I go down in the cancer journey seems to lead to increased vulnerability. I sit in rooms half-naked and get poked, prodded, weighed, and measured by dozens of strangers. There is a blind reliance on strangers that didn’t exist six months ago that I will never get used to. At some point in each appointment I have to disconnect. There is only so much information I can absorb in one sitting. Thankfully Amelia is at these appointments to pick up my slack.

Radiation has brought up a lot of emotions that I did not expect. I feel uneasy, exposed, and overwhelmed. Just when I think I’ve got my emotions around cancer cataloged and organized into tidy little volumes, some brand new situation surfaces and feelings bubbles up. I simply refuse to ignore my feelings. It does no good for me, and it certainly doesn’t make anything go away. I’d rather ride out the emotions that come with the territory, there’s far more for me to learn on that path than one of of blissful ignorance.

Radiation is some serious shit. A physicist is now part of my treatment team. Beams of radiation blast my chest wall, collar bone, and lymph nodes, annihilating any rogue cancer cells that happen to be hanging around. The mission of radiation is destruction and/or interruption of fast growing cells. I will most likely have a skin reaction. It may look like a burn, but it will not technically be a burn. With burns, damage occurs from the top down through the skin layers. Heat burns more layers with each degree and eventually blisters. Radiation works differently. It damages skin from the bottom up: damaged basal cells (cells below your skin layers) move upwards to the surface of the skin and ulcerate. It is not a burn, and does not act or heal like a burn even though it looks like one. But it all sounds a little creepy if you ask me.

For the next six weeks every week day I will lay topless, hands over my head, taking deep breaths and holding them three separate times for 45 seconds while I receive radiation doses. I take a deep breath to pull my heart away from the radiation beam as much as possible. This treatment will have a whole new healing process that can take two years to recover from physically. The radiation oncologist said two to three years, but I’ll take two, thank you very much.

Radiation

I met with a radiation oncologist in Rochester on Wednesday and she recommended I get radiation five days a week for six and a half weeks.

Every doctor so far has said the same thing to me, “You’re too young for this.” This doctor was no different. Her reasoning for radiation was solid: I’m young, my cancer was multi focal (which means I had multiple tiny tumors throughout the breast tissue), I’m estrogen negative, there was lymphovascular invasion, and the cancer is high grade.

My struggle and hesitation to get radiation is mainly about one thing: the risk of lymphedema in my arm. I feel like I’ve dealt with cancer, mastectomy, and chemo pretty goddamn well. I have adapted as new things have come up. But limit the use of my arm, and it may push me over the edge. It could very well tip the scales a little too much towards darkness and depression. Could I adapt to limited use of an arm? Of course, this is what we all do, adapt to our environments. This is how we survive and evolve on the most primitive level as a species.

But this could be a difficult adjustment for me. I have already been experiencing mild swelling in my wrist and hand these last few weeks. Radiation will further compromise my already compromised lymph nodes. It will scar and damage the remaining healthy lymph nodes it comes in contact with which could limit the flow of lymphatic fluid and increases the risk of more swelling.

There are things that I am doing to manage the swelling: wearing a compression sleeve and gauntlet, holding my arm above my heart several times a day, lymphatic self-massage, and physical therapy which I will start after chemo is over.

It comes down to the word “limit.” I don’t like that word. I don’t like the implications. I don’t like the sense of not having any control. Not that I truly have control over anything. Maybe this is what my struggle is about – letting go of control and accepting my limits.

 

One bad chemo left. Will I get radiation?

RadioactiveSymbolTime sure does fly when you’re not having much fun. I can’t believe that I only have one bad chemo treatment left, February 10. It’s going to be the end of a chapter in the Cancer Book for me.

But my story doesn’t end there, that’s for sure. Everything has changed and my post-chemo life will begin to show itself. I will still have nine more months of Herceptin, a targeted chemotherapy, but it will be nothing compared to how six rounds of Carboplatin and Taxotere have wreaked complete havoc on my body.

I’m meeting with a Radiation Oncologist next week, and I have to admit I am hesitant to get radiation. I just got my ass kicked from chemo; I’m not too willing to rush into radiation. The kitchen sink seems to get thrown at cancer, but in some cases there’s not enough information out there to tell us what really works and what doesn’t.

I had two positive lymph nodes which is a gray area for radiation. Long-term radiation studies have focused on people with four positive nodes or more. I’ve also done a lot of research on radiation therapy and found out that, yes, radiation can kick your ass in, too. It can fatigue you, burn your skin, change the texture of your skin, cause skin pigment changes, increase your risk of lymphedema (swelling), cause a secondary cancer, increase risk of heart and lung damage (especially if it’s on the left side, which mine would be), and you can only treat an area once time in your lifetime.

I feel like my left side is already severely compromised. I can’t feel most of it, and there is a lot of scar tissue that has been changing and evolving since the mastectomy. I am still getting to know this part of my body again. At my check up this week my breast surgeon told me the actual scar tissue on my chest is the size of a dinner plate, because that’s what was left gaping open when the breast tissue was removed before the skin was pulled together. So what looks like a ten-inch line scar is actually a ten-inches in diameter round area of scar tissue. That’s huge, and it’s still healing.

So far each doctor has deferred to the next. The Breast Diagnostic Doctor: Whatever the surgeon days, do. The Breast Surgeon: Whatever the oncologist says, do. The Oncologist: Whatever the radiation oncologist says, do. I don’t know, my gut says don’t. And who knows, maybe the Radiation Oncologist will see no need to treat it.

All I know is that if radiation is recommended, it is going to be a hard sell. Since the Herceptin is supposed to be a nail in this cancer’s coffin, I’m going to need to see some serious data showing that the benefits of radiation will outweigh the side effects.