A year ago today was my first meeting with my oncologist at Sloan. Before that, on December 29 2016, I had the meeting with my surgical team to go over the results of my pathology. It was overwhelming and although I already knew I had lymph node involvement (we were told as soon as I woke up from my mastectomy on December 16), it did not really compute, you know? I mean, I knew that meant I needed "chemotherapy" but I had not a clue what that meant at all.
Ah, ignorance really is bliss. I knew it was big and I knew it was something I had never ever envisioned myself doing...like ever. I think, though, this is true of all of us no matter our family histories or our backgrounds, "risk factors" or lack thereof, etc. No one expects to be told they have cancer and no one WANTS to get chemotherapy. No one.
I felt my oncologist's pain as she sat with us a year ago today for almost 2 hours (or more maybe) going over all of the ins and outs of what chemotherapy I would be getting, why I was getting it and about the side effects and how to help/manage said side effects. She wrote everything down for me in amazing handwriting, filling pages of information for me. It was an amazing appointment and one that without the written notes she wrote down for me, none of it would have sunk in.
At this point, I was working full time as a teacher, I even went back to work early after my surgery to be back to "normal" as soon as possible. It was a relief to have the cancer out of my body and I knew deep down that this whole chemotherapy thing was going to stop me from being "normal" and I was scared shitless. I had no one really to commiserate with other than my angel, my sherpa, who Sloan connected me with who quite frankly saved my life with these --> tricks-for-treatment.html for chemo.
You see, chemotherapy breaks you down. It strips away your hair, your dignity, your brain, your ability to "do anything" so that your body can ironically heal. It is quite confusing and I know there are a lot of people who are pressured from family and friends to forego chemo and instead to lick a unicorn but really, chemotherapy is one of the best tools out there to hopefully kill cancer cells.
When I began chemo a week after my first meeting with my oncologist, I was prepared and yet totally unprepared. You see, no one knows how their body will respond to these drugs. As someone who rarely took an advil, who didn't drink, who never took drugs, well, this was all uncharted territory for me. (And yes, I know I'm a square... I don't even drink coffee... what a dweeb. I mean, if I knew I was going to spend the big 4-0 getting pumped full of all kinds of shit, I would have imbibed a hell of a lot more.. .or period lol).
I survived chemotherapy and I worked full time during it but I could not do much else. I was not able to care for my children, to cook, to clean, to really move beyond that school bell at 3pm when I went home from work and just became a vegetable.
It was hard as shit. I was told I would have support, that everyone would be there for me but the thing about chemotherapy is that it strips you down to nothing. No matter who is "there" or not, you can barely notice. You are just functioning at the barest minimum. Still, I worked. I got up each morning, put on my wig, my lipstick and went to work. As a teacher, I was exposed to germs, the flu and more. Luckily, I did not run a fever during chemotherapy. I did learn how people can be nasty and heartless. I let it go here --> an-open-letter-to-me.html.
If you are here, at your first oncology meeting where I was a year ago today, you got this. Trust in your self, in your body. Do what you need in order to survive this process. God willing, you will never need to do it again ever. Remember, though, our sisters and brothers for whom chemotherapy is an endless routine to keep them alive. Pray for them. Pray for us, all of us, that a cure will be found. In the meantime, drink lots of water. Rest. Listen to your body and read and share my post about treatment tricks (link below). This is what I do in the time between...
It is so damn hard to be "woken" up to this world of breast cancer in so many ways. Not just because of the knowledge that life is really short but also because it becomes clear that you are not immortal - that there could be a day when you die from this disease before your "time". No one knows what their "time" is but I guess we always think, pre-cancer, that it is really really far away and not even something to think about because what are the chances that it will happen "soon"?
And what does "soon" mean, anyway? I mean, it is just not something you spend too much time thinking about when balancing life with kids, house, family, jobs, stress of all kinds and even a puppy. And then BAM, you are diagnosed with an illness that could, in theory, be deadly. The dreaded "c" word and no one understands and knows what it is even after surgery, after treatment, after the whole 9-yards, there are still always countless yards to go because end of story is no one knows BUT it could always be worse.
In my opinion, "worse" is to be diagnosed Stage IV from the get-go and it was something I was panicked about, without knowing the correct terms or what it really meant, when I was diagnosed last year. I was so afraid that it had spread, that it was elsewhere in my body that I asked for a pet-scan. I wrote about it before on my blog and the greatest gift I got at that time when everything was so terrible was that I had no signs of cancer anywhere else in my body (or at least not from head to knees).
I think every day about those who were diagnosed Stage IV either first thing or after years in which they thought the cancer was "gone" - being Stage IV means that they will be undergoing treatment for the rest of their lives, that their lives will be ending sooner than they thought full stop as most people do not survive many years with Stage IV, and a lot more of terrible stuff - most importantly is that research dollars do not go to Stage IV.
I am a newbie at this but I am trying to fill the void left by the death of my "friend", Beth Caldwell. I put "friend" in quotes because although I feel she was my friend, in reality, we never met. We never spoke on the phone. We never heard the sound of each other's voice in real time but we connected on social media. I was in awe of what she was doing as a founder of MetUp (metup.org/) as someone, just about my age who was diagnosed as Stage IV at the beginning of her plot twist and she did so much for the community, even for a newbie like me.
It is hard enough to deal with loss but this kind of loss is something that is hard to share, hard to deal with because who can understand that what I mean when I say "friend" - it is something most people who have never dealt with a potential life threatening illness maybe cannot quite understand. I feel her loss, the community feels her loss and we grieve it. We think about what we can do to fill the void.
As most of my blog readers know, I am unemployed right now but when I saw Beth's husband sharing on social media about her death and the organization she helped to fund research for to help others with Stage IV, I donated and set up a small recurring donation in the amount of $10. For those of us who are "early stagers", please understand that 1/3 of us do still run the risk of being diagnosed with Stage IV cancer no matter how pink and fluffy we were during treatment. This shit can still come back and recent research has shown it can even come back 15, 20 years or more later and God forbid it can kill us still. The link to donate in her name is below. When you donate, her family gets cards showing it was done and it is something to make her life be not in vain.
For her children and husband, my heart breaks and I think there but for the grace of God do I go - it could happen to any one of us it could even not be cancer but something else some freak accident but for those of us who have been touched by cancer, we always think it could be cancer.
Beth already inspired me to write one other post about being a mom and having cancer but this post is the most important one for me to write for Beth; do what you can, give what you can to help make breast cancer less of a potential death sentence. To help Stage IV because they "need more".
This is what I do in the time between.
*Read more about Beth here, www.fredhutch.org/en/news/center-news/2017/11/beth-caldwell-impact-metastatic-breast-cancer.html.
I am using my YouTube channel more and more to have dynamic content - I love to write but I also love to yap - I speak so much that my middle brother did not speak until he was 4 years old - when asked by doctors and therapists why he did not speak before he said, "I did not have to - Lisa spoke for me."
Now, I am speaking for those of you with breast cancer, those of you lost and afraid. It is normal to be afraid but do not linger in the fear. Kick yourself and smile - we cannot predict the future nor can we know when our time will come but we can trust our doctors, enjoy our days and hug our children. Every day we can do that is a win in my book. Stay smiling!
This is what I do in the time between....
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