it’s all in the coping, to hell with the hoping…

From Diann

We saw my Oncologist on Tuesday, Julie and I. Note to self: When my oncologist moves a scheduled appointment up a week, one day after a CT scan, something is wrong.My bone scans – as noted previously – showed decreased metastatic activity in my neck, which was to be expected due to removing a lot of the cancer there. There are no other signs of progression in bones. The CT scan showed that there is no sign of cancer in lungs, liver, bladder, ovaries, uterus; however, there is pericardial effusion. Fluid around my heart.

Pericardial effusion can be caused by many things, one of which is breast cancer metastasis. It can be a virus, which I have had – years ago, in the wee hours of the morning, I thought I was having a heart attack and was rushed to emergency. I spent that night having tests, EKG, ECG, and a lot of needles. It was determined that I had a virus that had attacked my heart, not a heart attack, thank you. I am not experiencing those symptoms right now, in a weird way I wish I was.

What I have been experiencing the last weeks has been a decrease in energy, which I notice most when walking up the stairs. It’s happened so slowly I wasn’t truly aware of it until this week. Plus, my breathing has been shorter than usual, which I attributed to my asthma. I also noticed that my left ankle didn’t like the elastics of my socks anymore, I thought I had gained more weight. Wouldn’t surprise me if I gained weight on one side, my physical symmetry has been pretty screwed up. My ankle was swelling. Turns out, these are all symptoms of pericardial effusion. While I tend to think on myself as a bit of a whiner these days, I will continue to track my condition and will not discount anything. Ever. Again.

On the plus side, I still have an appetite, which my good oncologist says is a positive sign. He explained that as my disease progresses I will eventually lose the desire to eat. I’m not going to add any sarcasm here about finally being thin again, because I’m not feeling amused about some things. Although Tuesday, while we walked down the hall after we were given the news, and back to the lab so I could pee in a bottle, I did tell Julie I wanted to die hot. Where the hell that came from is beyond me. I really don’t give a shit what I look like anymore, I just want to live a little longer and get stuff done. I think I was trying to lighten our mood. Julie replied quickly, “I want to die laughing.” I love her so much, it hurts. And, we laughed… her arms around me, my hands in hers, down the familiar hallway, scared of the unknown once again – we laughed.

I’m not ready for chemo again. No one is ever ready for chemo, what a stupid statement. I wanted a couple of years with bone mets first. Damn it. The heart sac? I have researched and read about breast cancer in my bones of course, because that’s where the first met showed up, in my spine. I’ve read about brain, spinal fluid, lungs, lung sac, the reproductive organs, bladder, and liver liver liver (what an interesting word for an organ that you need in order to live)… but heart sac? I have not seen that one in any of my virtual travels.

I’m jumping the gun of course, I know not the actual cause of this fluid build up. Yet. However, falling back on my reality, I’m living with metastatic breast cancer, so again, first thought is just that. How can it not be that. Right?

I’m not freaking out, I’m quite calm actually. It is what it is and I’ll find out soon enough. However, I’d like to write a bit more… because writing helps clear my head, and I’m dumping it out without any guilt whatsoever. Please forgive me. I will admit to feeling terrified while at the cardio clinic on Thursday waiting for my echocardiogram. That test determines the cause of the pericardial effusion. My oncologist suggested that they may aspirate with a large needle, that did not happen. I’m not sure if that is a good sign or bad. I’ll write more on that later.

From Mrs. M.

Julie dropped me off at Mom’s. After I told her a little bit about the results, and said it could be just a virus, Mom quickly told me that a bad virus was going around and affecting peoples hearts. That’s how Mom deals, and that’s how I prefer her to deal. We leave it at that. I took darling Sydney for a walk. She chased the rabbits all the way down the road, you’d be laughing hysterically now if you knew how Sydney runs. The rabbits were not concerned. Sydney never fails to heal my thoughts while we visit.

Once home, I explained the scan results to Jonathan and then Josh, two of my boys still living with me. Julie explained to Charlie and Brynn. I texted my middle darling and asked him to call so I could fill him in. My house phone rang right away. As soon as I heard Jamey’s voice the tears came pouring out, which only exacerbated the fear I’m sure. The worry and fear then spread, to my son’s fiancée Cassidy, to his soon-to-be third mother, Monica – who then called me to find out what was happening.

In this waiting unknowing sometimes terrified state I find myself in sometimes, I don’t wish to spread the fear. However, I don’t know how to sit on it and dwell either. On our way home from my oncologist appointment, Julie and I decided to keep things to ourselves until we found out the results of the ECGechocardiogram and possible needle aspiration (it was unknown to us that Tuesday that I’d have the test on Thursday – thank you Sue, that was quick). However, as soon as Jonathan asked me what the doctor said about my scans, I told him everything, and Julie did the same with Charlie. It’s how we roll, obviously – good intentions, keep the worry to ourselves, but we can’t lie either. So, the worry spreads, like a cancer.

It’s the unknowing, it’s the questions that may never be answered. When you grow up without the burden of a serious chronic illness you assume that every health issue will be resolved, eventually. Take a pill, feel better. Have surgery, remove the problem. Living with a chronic illness is hard, living with a disease that you know will kill you is hard. I’m trying not to let it fuck with my mind though. Too much.

My youngest son told me that just as I would want the straight goods from my doctor – no sugar please – he wants the same from me. He wants to know everything, up front, and he wants to be supportive. Ahh… there’s the rub. I have a little trouble balancing the support issue. I have spent almost 28 years trying to be a good mother to three boys, a good second mother to my niece and nephew, a good other mother to my sons fiancée… but, now that they are all adults, I struggle with the continued desire to be part of their main support structure while I in fact need their support. It’s difficult for me to accept this.

The kids and our hedgehogs, 1997, by Carolyn Frayn

All the progression that this disease eventually brings, all the shit and pain, the emotional weight of almost never ending thought torment, well, it can get pretty heavy. It is heavy. I’ve been through a whole lot of heavy, and there is more to come. But, you are just never quite prepared, even when you think you are. Although, after the initial shock and holy hell of madness I dug myself out of last fall, I felt a sort of resignation. Don’t take that to mean I have given up. I still have a lot of fight left in me. Draggy, achey, stabby, scared, scarred and tired, can’t quite get up the stairs in one go some days kind of fight, but a fight nonetheless.

Resignation to the fact that this breast cancer that is a part of me is going to spread farther, it’s digging in, it wants the life of my living body. So, I know it’s coming. I just wanted a few more years without going back to chemo. To catch up to myself first, it’s been one hell of a ride the past four years.

Well, if wishes were fishes. Maybe I’ll have those years, we’ll just never know until they are past us. Makes a very good case for living in the present, doesn’t it?

You know what is so incredibly stupid about cancer? It has warped ideas of invasion and triumph… It comes from our own cells to ravage us, to eat our bones and organs, to take over our life force, completely deplete our energies and leave us shells of former selves. And then what?

I’ve read ‘stupid cancer’ many times and have agreed, but it has finally sunk in just how truly stupid it is. You see, it never wins. It can’t win. Each battle we fight is with our own cells. How can we be both winner and loser? Easy. When we beat it back with radiation – our DNA is changed enough to kill or make quiet, most or all of it; or when we poison it – our immune system drained enough to leave it infertile for a time; or we manage to cut enough of it out – becoming Frankenweenie; our non-cancer self wins. However, in the end – when we die – cancer does not in turn become the winner. Like bloody hell it does. Cancer dies with us. Repeating myself, that ugly infiltration of destruction is our very own cells gone awry, therefore cancer is eating it’s own life force. Cancer is killing itself, sabotaging it’s own advancement.

Stupid cancer.

I will not lose my battle with breast cancer. I have fought my errant cells and will continue to fight until I cannot. Then I hope to smile, remain calm, continue hugging those close enough to hug, and try to say goodbye when the time draws near. Cancer never wins… When I die, so does the cancer within me.

We who live with cancer are winners, no matter our course, no matter our individual decisions regarding our care, no matter our outcomes. Should we lose our lives, we have not failed, we have not lost our battle. There is no failure on our part. We have done nothing wrong. Cancer may kill us, but cancer is the only loser.

2013 age 52 & 2006 age 45 (3 years before breast cancer) – half the breasts, one third the hair, one eighth the energy, can’t fit into my levi’s – still laughing, when I can.