My own personal crying game

An Open Letter to Joan & Hoda

NOTE: Every time a patient is the subject of an article, post, blog etc…. it should be first noted that PATIENTS have the right to describe, interpret, feel and portray their own experience in any way they want. Any way they want. I make no judgment on patients attempting to help the broader community and applaud all efforts, even when I have a different view.

Sitting up each morning poses a challenge for me these days. Recently my metastasized metaplastic breast cancer moved into my spine. It’s been radiated to relieve pressure but there is still damage and I am very careful about how I move out of my bed and into the day.

Emotionally, the mornings are difficult for me. It is still dark out and I am in some pain from the stiffness. I cannot help my husband get ready for the day, he must do all of the household chores, feeding the dogs, making the bed etc…. I feel  a bit of an invalid.

Tuesday morning I turned on the TV  hoping to lighten the mood and move my mind from the pain to a topic that would distract me. The TODAY show was on and so that seemed like the ticket for the moment.

A few news items were on and then a promo for an upcoming segment “Joan Lunden” talking about her cancer and how she is moving from the treatment phase and choosing to work as an advocate for patients. I was interested in hearing how she was and hoping the news was good.

The piece was nice, a repeat of her struggles and then onto her new goals and efforts. Mentally, I gave her a big hug and wished the best. I was glad to hear some good news and as the piece wrapped up feeling fine about the interview.

And then….. I cried. And cried, and cried.

Why? Because Joan and Hoda cut me to the bone.

Of course they didn’t mean to, but they did…. And it hurt. A lot.

Here: you can see what they said.

Joan Lunden and Hoda Kotb (go to 5:20)

“The whole thing is that you want to catch it early… and the other thing, ‘expect to win.”

These are two of the most hurtful platitudes that are tossed around the breast cancer community and to hear them on national television is difficult.  Let me tell you why.

Catch it early:

I think about this one often.  Technically, my first tumor was found at 2.0 CM…. that’s about stage 1b-2a. This is early by most standards. It isn’t too big and it hasn’t spread out of the breast.

By the “Catch it early standard” I should be cured and happily on my way to a long life, not on my third diagnosis.

But there is actually more to my ‘Catch it early” story. The truth is that I was considered high risk for years and been getting checked every 6 months. I had multiple benign lumps removed through my life and for months prior to my first diagnosis I had been on tamoxifen to help my body fight off the chance of a tumor.  This is called “Chemoprevention.” The point of the “Chemoprevention” is to stop you from ever getting cancer.

So, in the “early detection’ world, I should have been golden. I was under the care of an oncologist and being watched closely for months BEFORE I ever had a tumor.

How much earlier could I catch it?

This is what I call the “early detection myth.’ Advocacy groups, medical professionals and misguided patients have repeated this myth so often that the public actually believes that women DON’T die of cancer if they catch it early. People think we are NOT dying. Don’t take my word for it…. Talk to others…. People believe breast cancer is cured for the vast majority of women. And so, I cried…. And cried…. And cried because I am dying and there was literally nothing I could do about it. Cancer wants to kill me and it most likely will and all the monitoring in the world did nothing for me at all.

 

“Your attitude will cure your cancer”

Right after telling me that I will not die of cancer if I am vigilant and ‘catch it early.’  Things got worse. Joan and Hoda were not done telling me that I had done something wrong. They piled on with the deepest cut of all….

“Expect to win and stay engaged in life,” Joan said and Hoda continued the thought with these words, “….I know a lot of women with breast cancer and they all have one thing in common, ‘they are still here.’ 

And so then I cried…. Even more…. And even more deeply and longer.

Of course this sounds like such innocuous advice "be positive!" It can't hurt and could likely help you deal with side effects and emotional problems.... but will it cure cancer? No, it will not. "Expecting to win" is not a medical intervention, it might make your days better but it will not change your outcome.

So why on earth do people say such ridiculous things?  There is more to it than simply implying that positive thinking will cure cancer, consider this:

Joan and Hoda, I know what you think you said but I want you to actually hear what you said.

You told me that:

1. My cancer is my fault (I wasn't vigilant enough)

2. If I had "expected to win" each time I was diagnosed I would not be dying

3. Only stupid women die of cancer because only stupid women don’t get screened, advocate for themselves or take care of their breast health

4. Other women are living because they WANT to…. So by extension, I must not want to live.

5. Only survivors are winners, if you don’t survive there is something wrong with you.

I cried…. And cried…. For myself  and I cried and cried for the other women who will get an aggressive cancer and die. It won’t matter what treatment they take, how much they love their families or how well the follow doctors orders, they will die and before they do…. Other patients will publicly denounce them as women who did not expect to survive, women who do not have valid experiences, women who failed themselves and their families. And THAT is why I cried.

Things are getting tough all around

At this point, some of this blogging is just self-indulgence. Maybe I'll say it's a bit a therapy to get it out there as well.... but mostly, I'm just recording what is going on.

And, what is going on is that its getting tough up in here.

It's my back... yeah, my back. Like having giant lung tumors wouldn't be enough, I have this terrible back problem. The cancer moved into my spine a few weeks ago (Quite quickly I might add). It fractured some bones in my back. I needed radiation, which I got in short order. Now, I need to know that the radiation worked and that the bones are starting to settle back into place.

In the mean time, I am supposed to be wearing a brace. At first I embraced the brace, I still do but it's is difficult because the brace itself confines my back, forces me into a postilion that becomes uncomfortable over time and in the end causes me a great deal of pain and muscle ache.

It's this problem that has come to define my days. I cannot drive, I cannot move easily, I cannot pick things up, bend over or lay down easily. I cannot easily work on my computer because I am not supposed to bend that angle. I have to be careful about coughing due to the jarring of my back. I can't eat foods that cause phlem.... ice cream, mild etc..... so a nice comforting chocolate shake is out of the question for me.

I'm simply stuck.... stuck watching TV, vegetating and allowing my my to wander to difficult/dark  places. I'm making it hard on myself and I am making it hard n my husband. I am making it hard all over.

What will help? Fixing my back will help.... but I am not there yet.... right now, I am here... sitting in front a a TV, unable to do much work, but fully capable of going down the Rabbit hole.....

"One pill makes you larger and one pill makes you small....." The one I am looking for is the "one that fixes it all."

The mornings are earsier

The past few months (maybe 2?) it's hard to remember.... they have been full. Full of bad news and pain, and doctors and appointments and things that scare me to no end.

I'm afraid too much has gone on to even really attempt to catch others up on what has happened. So, I won't try for now.... for now I will say, the mornings are better.

In the mornings, it takes a minute to move into position but after the night -resting- the joints I am not using enough right now and the muscles that need exercise, they are not so sore and they allow me to feel a little like myself.

I manage to sit myself up, my husband always nearby to help, to say some prayers. The prayers are an amazing comfort.... "I cried out to God, and he healed me."I never knew how much comfort the prayers would bring.... but they have

My spine is fractured from the cancer  in the bone. The radiation is killing that cancer but I cannot move around too much for fear of hurting my back more before the fractures heal. I am in a brace. There are other pains in my lower back and leg and I live in shear terror that these pains must be looked at as well. I can't take more bad news but I can't afford to ignore anything as well. If I could just repair these issues.... I'd be elated to ONLY worry about lung mets.....

In the mornings I get about 4-5 hours of genuine relief. I am trying to fill those hours working on something of value. Working on advocacy, connecting with friends and any other important work I can manage.

I don't know how long I can make it, how lucky I will be with the medicine - all I know is there is work to be done, things to be said and I am not done and the mornings are the easiest.

Clinical Trial: From the big room to the little

 I went up to the fourth floor of the medical building, where the oncologists office is located. I signed in and waited to be escorted to the infusion room.... a room I was all too familiar with. The smell in that room still makes me physically sick, the chemicals, antiseptics, alcohol... etc.... just brings back so many memories... ports, saline solution, the red devil..... you name it. I can barely walk by that room without wanting to throw up.

But on this day I wasn't taken to that room, instead I was escorted back down the hall, into a smaller area where every patient had their own small room for their infusion. So this was it.... my last two experiences with metaplastic breast cancer I had been grouped with all the others, in the big room but I had graduated to my own special place. All alone. I am now a special case.

Don't get me wrong, I am eternally grateful (at this moment) to have been accepted into the PDL1 clinical trial (MEDI4736).

This drug is substantially the same drug that saw so much success with melanoma that it was fast tracked by the FDA. Seems great but the frustrating thing is that the medical definition of success is much lower than my own. There is still a better than 50% chance that this drug will have no affect on me at all. And, they are not offering me a cure, it's still just an extension of life. But I am chosing to see a miracle. Someone has to be the first miracle.... why not me?

So there I sat in my own little private room. While I appreciate the comfort of the privacy and attention all on me, I also recognize that this is the end.... the last room they have for me.

Just like my grandpa who went from his own home, to a small condo to a single room.... the world is getting smaller. For now the tiny room will do but here's to success and hoping that the little room does the trick and opens up the rest of the world to me again. 

The Happy, Happy, Joy, Joy bandwagon

It's kind of tough NOT to jump on the Happy, Happy, Joy, Joy bandwagon. It seems like everyone I know is fully on board. And when I say on board, I mean both feet, buckled-in. No hanging off the sides, ready to jump off at a moments notice. No, my friends and family are on for the long haul. After all the Happy, Happy, Joy, Joy bandwagon is a fun place to be..... and in their defense they want to be there, they don't want to think of the alternatives.

"The wheels on the bandwagon go round and round,
round and round,
round and round,
The wheels on the bandwagon go round and round,
all the live long day.

The clinical trial will work, work, work
work, work, work
work, work, work
The clinical trial will work, work, work,
all the live long day.

Maria's going to beat 'this thing'
beat 'this thing'
beat 'this thing'
Maria's going to beat 'this thing'
and live the live long day."

I have to admit, I find myself sitting on the bandwagon all buckled in and singing a long a lot. Why not? There is always a chance, right?

But then I go to the head CT, the lung biopsy, the chest CT... whatever is up next, and lying there alone, my eyes well up with tears. I try not to let the tech see but sometimes the tears roll down my cheeks and I can't catch them in time.

I can't hear the music, there is no bandwagon. There is only me, walking alone because that's what dying is.... something you do alone.

The music is replaced in my head by the sound of the doctors voice. He says just one word, "incurable." There must not be a dictionary on the bandwagon because I know some of the people on the bandwagon heard the doctor say the same thing. Maybe they don't understand? I ask the doctor one question about the trial, "Is the intent curative?" His answer is again one word, "no."

Of course then the dawn breaks, or the scan is over and I quietly try to climb back on the bandwagon. The people there are so nice. They just want to be nice to me.... but I worry that avoiding thinking about the truth will just make it harder. I have to be ready now. I have to know I didn't leave anything unsaid. The others will still have time to say what they need to say.

I do have hope but I need faith... I need God... I need to know that even when the bandwagon stops and the music is gone that it will be alright for me.

Spitting image

It's a funny thing to me.... boys are much better spitters than girls and I don't know why. It doesn't seem like this one skills is where the line is drawn between the sexes. 

I was basically a tom-boy as a child so you'd maybe think that spitting would come more naturally to me but it never has. So it comes as no surprise that my cancer has metastasized to my lungs.... causing me to cough and cough up a lot of ... well, yuck!

I guess it'd be better if I could spit with the confidence and accuracy of a major leaguer but sadly I cannot. It's a special little extra torture for me personally that while walking down the sidewalk or up to the office doors I'll stop and have a coughing fit that requires me to spit.

If I could do that tongue and throat thing guys do, focus in the back of the throat make the lugee, sit it on your tongue just right and expell the offending content with force and expediency.

Unfortunately, that's just not me.... instead I am this pathetic wretching, crouched over old lady with long drips of spittle hanging off my bottom lip refusing to let go, instead attaching to my chin or forcing me to use my finger to detach the spit with a series of tongue and lip mini spits, like when you have a hair in your mouth.

No there is no dignity in cancer, and we all get to suffer our own special little indignities..... spitting just happens to be one of mine.

Lessons Learned

One year ago today I learned a lesson I never thought I would.

On may 19^th, 2013 I was scheduled to see my Oncologist and get the pre-chemo blood draw necessary for  my fourth round of the Gem/Carbo chemo regimen.  I had already endured six treatments (three rounds) since mid March.  I had  done well with the first two treatments, even taking an overseas vacation during the in-between week and managing very well. That is until the day we returned.

The day we came back from vacation, it was at the end of a seven day whirl-wind trip and very long flight..  As I began to wind down, I thought I had maybe overdone it and was looking forward to some rest. I wasn’t very concerned about how I felt, thinking it was only the trip.

It didn’t even occur to me to calculate the nadir for the regimen. During the chemo regimen I had only just completed less than a year earlier, those low days hadn’t seemed much lower than any others and so I never focused on the nadir. I went to work the day after we returned from the trip and lasted about half the morning. At about 11a.m. I packed my laptop, went by my boss and said, “I’m leaving.” I went straight home and crawled into bed. The next day was my regularly scheduled  visit with the Onc and blood draw. 

That day the NP came into the exam room. I had laid down on the table to rest because I didn't have the energy to sit up. She bent over and looked at me with concern, “You want to go to the hospital now? Or wait until tomorrow?” I just nodded but I said, “I can wait.”

You see, other than the mastectomy, I had never been hospitalized. I wished almost immediately that I had just agreed to go to the hospital that day. My white blood cell counts were low, and required me to get IV antibiotics but it was the red blood cell counts that had knocked me out.I needed a blood transfusion to return to acceptable health.

After that day, I didn’t go back to work. I felt pretty low for the rest of regimen. I had  to push back the second treatment for the antibiotics and the third for low counts as well. When I pushed back the third treatment I was so upset at the thought of waiting another week to be done that I called the next day, as soon as I felt better, and begged them to get me in earlier.

Imagine that, I was begging to get chemo…. But that wasn’t when I learned the lesson. 

I learned the lesson after the third round. During those two weeks following the sixth dose, I slowly slid into the abyss. Sure, the fatigue increased ten-fold but that wasn’t it… my skin became sallow and I actually looked gray, but that wasn’t it…. bruises appeared on my back and legs and I had two black eyes...  but that wasn’t it either.

What was it? It was the depression, plain and simple.  I never knew I could feel so low. I could be so despondent. I could be incapable of mustering the strength to go on.  I learned I could be low enough not to care anymore. Despite the idea that I was ‘waging a war on cancer... a battle for my life,’ I no longer cared. It didn't matter if I was risking my life or if I needed the treatments. I didn’t know if I had received enough of the regimen and I didn’t care if it wasn’t enough. I couldn’t ‘live’ like that .

One year ago today I went to my oncologists office and begged NOT to have any more chemo. No, that’s not quite it. I outwardly refused to do any more chemo. I told the doctor, it didn’t matter the outcome, I wasn’t able to do any more. I was done.

And so one year ago today I learned it was possible for me to ‘give up’ to no longer care. From the day I was first told I had cancer until one year ago today, cancer took so much from me. I just never thought it could take my will to live. AND, that is a lesson I never thought I’d learn.