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...
I have noticed lately that there is this huge improvement in the way I just manage life but I will never thank cancer for anything so I am just going to chalk this up to me being this “new and improved retro weight me”.
When I was diagnosed and in the middle of the worst shit anyone with cancer can explain to you I still kept things positive, laughing, smiling and just overall being like, “This sucks, but it could always be worse.” People constantly told me how amazing my attitude was and how they were in awe of how I chose to be and I was always surprised because as I told them it was not a choice; it is just who I am. I have spent a lot of time in my life making lemons out of lemonade, I guess.
I never ever expected to get sick, though. Like really sick. I guess I thought I could keep being SuperWoman forever, keep bottling up my feelings forever, keep moving at the speed of light forever. Now I know those things are not what I want to be, not how I want to live. I want to enjoy life, to be present in the moment and to be more than just “mom” (although it is the best title I ever have had, I know this time is fleeting and that the kids are growing and I am sitting here with many years of being the only caregiver under my belt and it is time to expand the operation).
I hate the idea of people pitying me. I mean, I get it, it sucks to have/had cancer but it can suck more and for people out there who think, “Oh man, I am so sorry for her. I am so happy it is not me.”--> I can just say I used to think this way, too. I used to think this whenever I heard someone else’s bad news. Now, I do not think this way anymore. Instead I think, “What can I do to help that person.” And then I do it.
This is why pity is a useless emotion. It makes you feel as though you “did” something when in reality all you did was think for that moment how much more lucky/blessed/happy you were compared to that person and then a few minutes later, the dog crapped in the house and you forgot all about that other person and how you should be happy you don’t have to deal with what they do.
I think everyone on hearing someone else’s bad news should just be like, “What can I do to help.” instead of internalizing that shit right away and forgetting it.
My superpower is that I know life is precious and worth every god-darn moment and that there are no do-overs. When I accidently pop an extra sudafed, I do not give a shit anymore because I know I have had poison pumped in my veins for fun. I am the person who will try to help you no matter what. However, I, too, have my limits. I have learnt the hard way that being superwoman is not so fun. It means everyone depends on you to do everything and you cannot get a moment to rest.
With my new superpowers, I can figure out what is important and put my energy on that. For me, what is important is love, laughter and the hard work that goes into being a well rounded person. It is hard to balance all of the different pieces of me and the things I want to do. Sometimes, I feel so many emotions at once I cannot manage them all so I need to decompress, meditate, exercise and do what I need to do to take care of me. I can do that all now, too.
I also know that worry and fear are useless. Having all of that fear in my life did not stop anything bad from happening - the bad happened, I got cancer. I know, too, that even though I got cancer that does not mean all I get know is pity and sad faces. I am me, I am irreverant and will tell you all about my fake boob and make totally wildly inappropriate jokes about random things. It is infinitely better to laugh at life than to take it too seriously. There is no “why me” over here just a constant laserlike focus on getting healthy and kicking cancer’s ass one day at a time.
What is your superpower?
This video is a long time coming - from when I first stepped foot in the Evelyn Lauder Breast Center, I knew I was where I belonged. My surgeon treated me like a daughter; my oncologist treats me like a sister; I tried to make one of my chemo nurses my sister in law.
Where you are treated can make a huge difference in just everything about your health and your future. I tell my doctors all the time that I do not worry because I expect them to worry for me. And they do. At Sloan, I was treated like LISA - I was me, everyone loved me and they did not need to love me.
I also was treated quickly - from my first appointment to my surgery it was 11 days. And only that long because my damn right breast was dense and hiding the cancer and I asked for a pet scan.
May you never walk in my shoes but if you do become the 1 in 8 diagnosed with Breast Cancer in your lifetime, pick your SLOAN.
You learn fairly quickly when you are diagnosed with cancer that there is a whole world you knew nothing about - a world you never wanted to learn anything about with its own terminology, procedures and treatments.
You recognize quickly that when you used to go to a doctor, you would maybe get an antibiotic or some other treatment option that would make you feel basically instantly better. Not so with entering the world of cancer treatment.
My doctors are wonderful and caring but I do know of some people that feel as though their doctors in cancer town and the cure are in some ways worse than the disease. I do remember sitting with my husband before my 3rd chemotherapy (AC - red devil) and saying, "I felt better with the cancer in my body than I do now."
It is true - the cancer was just sitting there, not causing any symptoms. In fact, I was the busiest I had been in years with my first full time job in 8 years and handling everything at home and beyond. Yet, cancer was not welcome in my body so I persevered with the treatments.
My surgeon is a doll - his role was complex but at the same time kind of "cut and dry" (pun intended) - he was able to go in, see all of the cancer and remove it. End of story. There are no "what ifs" for him - it is done to the best of his ability, he is confident and in fact after the surgery, he phoned my husband in the waiting room and said in effect, "I have removed all of the cancer, it is all gone."
My follow up with the surgeon was also one of positives - all about how the surgery was successful, how wonderfully I was healing (really, I am lucky - after surgery I never thought I would look "normal" again - it is definitely a new "normal" but it is okay to me) and to set up my appointment with the oncology department.
This is where things change - this is where you would hear the ominous music if this were a movie. The surgeon knows this is what it is - I went in and removed it. The oncologist sees everything else AFTER surgery and her tools are limited to medications and concoctions that flow through the bloodstream and are not as precise as scalpel and anesthesia.
My first oncology meeting seemed to be a hard sell to get me to agree to do the chemotherapy while I was ready and willing to do it that DAY if I could. It was a more grounding meeting discussing all of the potential side effects even the ones clocking in at less than 1%. It was sobering after the "success" of the surgery but I kept trying to think positive. I had tons of help and my wonderful guru's advice on how to survive treatment (read about it here tricks-for-treatment.html).
My husband asked the oncologist to help me calm down and explain to me what could happen and my oncologist (bless her, she meant well) began talking about (paraphrased) "..well either the cure works or you wind up with stage 4 and that cannot be cured."
That was not the pep talk he was hoping for from the doctor. But this is it, you learn real quick in the world of cancer that there are no "definites". And you also realize that your whole life you have been duped into thinking anything could be a definite. You have to believe you will be cured, you have to have faith you will be cured and yet, you still might not be cured.
The idea is though that this is life - it is not always fair, you do not have guarantees and all you can do is stay positive and focused on what you can do/control, which is not as much as you thought you could control before cancer diagnosis.
This is oddly freeing, you know you can only do so much so you stop trying to control the world with your mind. You just accept this is where you are and how to maintain your life becomes most important.
Chemotherapy and Radiation are extra layers to make sure that the surgeon's precision at getting all of the cancer out is solidified. There is always the possibility that a cell or more escaped and moved elsewhere in your body. My petscan was something that gave us some level of confidence that the cancer had stayed localized to the breast area but the fact that it had gotten into some of my lymph nodes meant it was time to layer on the treatments.
And layer them we did. Now we just wait. But I prefer to do what my oncologist told me to do. She said to just forget all of this has even happened unless you have to deal with it again. So that is what I am doing - believe it or not - even though I write about it I am exorcising it from my brain to the keyboard. Making room for the memories I am making and the new life plan I am following - less of a plan and more of a balance, of getting to be me, Lisa and not letting fear control me. I am me, I am here and that is all that matters for now.
Cancer comes with its own world and vocabulary. When you find out it is inside you, you just want it out as soon as possible. You cannot see past getting it out. Before you can get it out though, doctors need to be sure of what you actually have and what surgery you need (if you can even get surgery).
Depending on what you have and where, you have your surgery. Depending on the surgery, you are given a follow up treatment plan. The treatment plan might include chemotherapy and radiation like mine did.
When I began chemo, I was most concerned with my immune system and having to potentially go to the hospital with any temperature over 100.4. With two school-age children who often get sick in the winter, I was very concerned about this temperature cut off. I also wanted the chemotherapy to finish as quickly as possible. When you first sit down with an oncologist, be prepared for a lot of negativity. I think it is because they worry you will say "no" to the chemo. Trust me, if I thought for a second that I did not need chemotherapy, I would have run away immediately after hearing just SOME of the side effects.
For my cancer, I was prescribed 8 rounds of chemotherapy in 2 week intervals across a total of 16 weeks. Do you know how many days that is - I did - I kept a running count in notebooks, on calendars and any notebook in my reach. I remember sitting on my couch before my first round wishing there was like a live in camp where my children could move and live during the 16 weeks. I knew it would be very hard on them to see me broken and tired and I just knew I would be broken and tired. You rarely hear of chemotherapy patients who are not...
I do not google my stuff - I know the danger of falling down the WEBMD hole and diagnosing myself with imminent death so I stay away from any thing that resembles web searches. I went in for my first round and watched in awe as the chemo nurses (who are all amazing) covered themselves head to toe just to sit and inject me with the red devil - the "A" in the "AC" combo chemo that I was going to get for the first 4 rounds; the second 4 rounds were Taxol.
Here are my quick tricks on getting through the interminable rounds of chemo:
I was lucky enough to get all of these rules in advance by someone who is my Guardian Angel - someone who went through it and was linked up to me by my treating hospital. She explained everything to me and even started texting me to get me to start drinking the water 3 days before my first treatment. I would not have survived chemo without her advice.
Do you have any hints or tips for chemotherapy?
Oh and after my first one, my 6 year old cried because he could not handle seeing me so tired and in bed early in the day. I worked full time through the full 16 weeks and only missed a few days due to complications. I did not have to spend any time in the hospital with fever, because I followed the rules, particularly rule number 6. I made my countdown with sticky notes on my wall when I had 68 days left until my last treatment and each morning would pull off a number. When your number gets small enough for you to see it visually, do the same if you would like - it helps you realize time is passing when you are in the fog of chemotherapy.
The Time Between Is, INC is a 501(c)(3) corporation - help us reach our goals of launching #balanceaftercancer
Search the blog here: