The Chemotherapy Has Begun

This photo is my simplistic view on a cancer diagnosis . And the weirdness of all that must be done to make it go away!!!

Day 1 of chemotherapy was on Monday, March 27th and my biggest fear was some sort of immediate allergic reaction with vomiting and distress. None of those things happened! 

The details: we are pursuing treatment at the Roswell Cancer center. I am getting two types of chemo for the first four rounds and then switching it up halfway through. They give you ALL the anti-nausea drugs a half hour befor it starts. The first drug, is pushed through for the first ten minutes. It is bright red and immediately caused my urine to turn red and can do the same to your eyes. Gregory had packed a cooler with items we read about online - popsicles, italian ice and cold drinks. I inhaled two popsicles during the doxorubicin push in attempt to "save" my mouth from sores and irritation. (So far, no mouth issues - but they can develop anytime in the seven days after treatment.) 

The last half hour of chemo was the Cytoxin (gotta love the toxin right in the name!) and uneventful. To give an idea of how long the entire process takes - medicine took up to a little over an hour to administer but we were at the hospital for about five. And it was CROWDED. If that gives me any perspective, it's that there are so many other people going through the same process. 

Now here is the question: How am I doing? 

I have several anti-nausea medications. One for the morning, which contains steriods... which kind of make you move whether you want to or not! Another for night, which has knocked me out both times I've taken it. And two others that can be taken as needed. I also went for my first acupuncture session yesterday which was weird but wonderful. This is from another provider because the cancer center was booked a month out for their one (!!) acupuncurist. She basically stuck little needles in my ears, stomach, hands and lower legs, shut off the light and told me to nap for 30 minutes. :) I have one small needle in my ear that remains for a few days to help alleviate nausea. Even if the "belief" that it works is all in my mind - then that's great too. So far, I feel like I have morning sickness that comes and goes. I've been able to eat and drink. 

My sister came up to help watch Finian and deliver several tasty meals. Gregory continues to manage our chaos. It's funny and scary how fast life continues to move - even in the midst of a dramatic illness - Monday night kids had dance class and Jackson his induction into the Art Academy at high school. Tuesday Elliot had a big choral concert and I felt just fine attending. Although for the first time since Covid, I was starting to look around at the crowd of people as if they all had germs they were trying to share with me. 

Two amazing meals were delivered for the meal train and I am looking forward to some Doordash action tonight. AND... Ayla has her drivers' license! (Which might be more anxiety inducing than chemo, seriously.) But HOORAY! 

I appreciate all of the texts and check ins. With all the emotions this brings up, I mostly feel love and appreciation. And tired. :) 

THE PLAN

  I am a calendar person. I love to cross days off with a big X, have countdowns to exciting events and write schedules in calendar journals. I like looking at the current month and also looking ahead. 

 The waiting game over the last month has given my calendar-centric behavior new direction. 

 First it was waiting for pathology results and then waiting for a scan. And after all of the information was collected, I kept telling people - March 13th, March 13th!! -  that's when we will have a solid plan! And now with that plan - I am watching the days on the calendar pass, X by X, until the chemotherapy portion of my treatment begins. 

 THE PLAN

 Chemotherapy will begin on March 27th. I am scheduled to have an infusion every two weeks over the course of four months. This all depends on my ability to stay healthy enough to get said treatments. They will test my blood each Monday scheduled to ensure I've regained enough white blood cells to continue. 

 The standard treatment plan, or at least in my type and stage of breast cancer, is to use two different types of chemo to attack the cancer - kind of f&ck with it in case it decides to defend itself from the first chemo. If anyone is curious about which types of chemo - well, send me a message because I'm still learning the difference between the medical name and the brand name. I do know that the first one is very strong - and has the nickname of the "red devil". A friend more aptly described it as sounding like the big red Kool-Aid man... and I like that visualization much, much better! So me and big red will meet to destory the two tumors that started this nonsense. 

First chemo drugs vs second chemo drugs will have different potential side effects - we talked in length about them with the pharmacist this morning. I will almost definitely lose my hair. I've gone back and forth considering the cold cap system... but that deserves a post of its own. I will experience nausea but hopefully the pre-treatments and multiple anti-nausea drugs will help. I am no stranger to the power of Zofran from my gallbladder problems. I will combat bone pain and fatigue. I've also gone down a couple internet wormholes reading about neuropathy and chemo brain. I could have all of these or none - but the Girl Scout in me just wants to be informed and prepared.

 At the end of chemotherapy treatment (hopefully on July 3rd!), my surgical options will be revisited. In a world where everything goes as planned, my tumors will be greatly reduced and I will only need a lumpectomy and few lymph nodes removed. As for radiation, it's been discussed - but don't know for sure. 

As for our emotions over here, I feel one million times better knowing the where, when and how. I'm not looking forward to discomfort and the disruption of my life - but I also feel very "carried" through all of this. All of the well wishes and concern are like this blanket I can carry with me to hold close through all of the uncomfortable procedures. We created the Meal Train calendar just last week and I'm blown away by the donations and commitments made to help get meals to my family over the next four months. Even a little weight lifted, responsibility and financially speaking, has already given me more resolve to get through this treatment and take care of myself foremost. I, of course, will continue to "Mom" from either the couch or wherever I find energy to be - but taking away the task of meals is a life saver. 

 We are so very grateful! Thanks for reading my cancer edition of the day. 

Words and Good Intentions

I got my cancer diagnosis on a Monday and we had told most people we needed to directly contact within a week. Oh how bad news brings out our most secret fears, desires and emotions! And with the powerlessness of it all... We want to say something, do something, do anything to make it better. But we are all just human - doing our best to understand ourselves and others. 

Most of our family and friends are very intuitive, kind and know us well enough to say the "right thing". As if the right thing or words can change my situation. But it's what we do and how we relate. 

I wish there was a better way to gain true empathy than going through the pain personally. Because I now know, only a few weeks into this diagnosis, that I didn't do enough for friends going through the same thing. I didn't understand the fear, the anxiety or the perpetual stress this causes. 

I'm getting better at sharing the news and not breaking down entirely. I'm getting better at receiving what others are able to give, even if it's nothing at all. I'm going to try and get better at communicating exactly what I need. 

I have included a link to an article breaking down some basic what to say and what NOT to say to a person who has been diagnosed with cancer, or with any illness really! It's pretty solid advice. And what's "right" for some might not be "right" for all. I may develop a better sense of humor about this later - but I'm not there yet! Nor am I ready to see any positive spin! 

https://www.roswellpark.org/cancertalk/201603/what-not-say-cancer-patient

A friend was so honest in her response that (1) she didn't know what to say or how to organize for this and (2) tried to tone down the toxic positivity/gratitude. That's all I need - honesty. I know we WANT to believe that all will work out and it will be fine... But it might not be! It might take a long time to feel normal and whole again. 

I'm hot and cold, angry and in disbelief and also very frustrated that every "anti cancer" dietary recommendation is basically what I already do. This is random and for whatever reason, my body failed to stop cancer from forming. 

BUT - every item that has been sent in the mail or kind message has been a life boat. From a simple "I love you" card to the f$&k cancer socks and tshirts, the craft projects, books, candy, stuffed animals, Miss Piggy shirt, quilt from a church ministry, healing jewelry, tangible advice, organic vitamins and personal medical experiences - I see all of you and our connection. I do appreciate it, even if it can't change the circumstances. We are surrounded by so many thoughtful, loving people. 

As for the medical update: 

This is hopefully our last weekend of waiting. I've had every scan and biopsy they've asked for. We know that I don't have any other masses in my body, but there are cancer cells detected in my lymph nodes on my right side. So when we say caught "in time" - we're right on the cusp. Chemotherapy is absolutely going to happen - I just don't know the duration and drug that will be chosen by my doctors. 

Good news is that I do not have the BRCA gene mutation, which is even better news for my children and my brother. Annoying news is that we don't know the WHY cancer decided to grow and was permitted to grow in my body. 

Things I Have Learned About Cancer

 The past couple of weeks have been a lot. 

 First, I learned that I have breast cancer. 

 My mammogram led to an ultrasound - then across the hall to the breast surgeon. Then a consult and biopsy on two lumps. Then a phone call with "results" that they wouldn't tell me over the phone. 

While I was waiting for those results - I found out that a dear member of my family was headed into surgery for a bilateral mastectomy due to a breast cancer diagnosis. Same age as me. This felt like a harbinger, and in fact, it was. A few days later in my doctors' office, I heard the words Invasive ductal carcinoma and was then ordering genetics tests and my brain started to blur. I didn't even ask for the biopsy pathology - at least not for a couple of days. 

Second, I have learned that no two cancers are the same. While it has become a bit of a universal experience to either have watched a friend or family go through the diagnosis or treatment, or to have experienced it yourself - each case is incredibly nuanced. That may seem like common sense to others, but I've learned a bit about genetics and hormone receptors and what types of cancers may need chemotherapy or not. 

Third, I have learned (or been reminded) that our connection to other people is everything. I have felt like mortality has slapped me in the face. My entire life is a sum of experiences, relationships and feelings towards and with other people. It's hard to describe how much more deeply I feel this. People show their real nature almost immediately when hearing difficult news - and I'm surrounded by a lot of amazing humans. (Some have also fallen into their predictable patterns and then I really can say, "Not even a cancer diagnosis will change this!") 

This blog, when I wrote regularly nearly ten years ago, was a source of creativity and posterity. A little bit of therapy too. It gets the words out of a swirling tornado in my head and satisfies my need to connect. If I can share what's going in my life and get some feedback or a shared experience out of it, that does wonders for my mental state. 

So while I need a place to share what sometimes might be lengthy information or not fun for social media - I didn't want to create a singular place for cancer updates. My ultimate hope is that this is a blip in a long life of experiences, and while I will always BE a person who has/had cancer - I will also continue to be more than that. 

So - what I do know as of March 4th, 2023 is that I have invasive ductal carcinoma in my right breast. Two tumors were found (or palpated by me if you want to be technical) initially and several more were found by breast MRI later. I've had a full body bone scan and chest/abdomen CT. It does NOT look like there is cancer anywhere else in the body. Yesterday I did have two more biopsies - one on my left breast that wouldn't be of any concern if I didn't already have cancer and one of the lymph nodes on my right side as a cautionary measure. 

I got my initial diagnosis from a private practice but here in Western NY, we have a very prominent cancer treatment center called Roswell. Within the first day of my diagnosis - as I was messaging friends - a doctor at Roswell was recommended at least four times. (And the online reviews of my current doctor confirmed what a friend said about her - hot & cold mood and unpredictable. Those aren't things you want when dealing with cancer.) 

As of today - we are pursuing treatment with Roswell. They are recommending chemotherapy first, which is not what I wanted to hear. I think our natural instinct is to get this stuff out of my body! Of course no one wants major reconstructive surgery but I was hoping for that instead of what might be a long length of time fighting this medically. Since my body has already failed to stop cancer from forming, there is the risk that I have pre-cancerous cells floating all through my body and the entire system needs to be shocked. I feel like this 42 year old baby still asking the grown ups what to do and where to turn and just give me more time to do everything. 

Fourth, I've learned that while people have nothing but good intentions - their words don't match what you need. Right now I'm letting all scenarios play out in my head. Negative, positive, catastrophic, realistic, unrealistic, funny, sad, ridiculous or dramatic. We just don't know what is going to happen. It's ok to also say I don't know WHAT to say or this sucks and I don't have a solution. All methods of coping are welcome - prayers, advice, sharing of your own experience, or even distraction. Maybe I'll adopt that positive mindset in a minute - but for now, I'm angry and frustrated. I don't believe there is a divine reason for everything. I think genetics mess with us and we have toxic chemicals in our air, water and food. While I think I can learn from any experience, I don't think I needed a lesson via cancer to value what's important or show love to my friends and family. It's a headache and a hurdle and will cause stress to me and my family. 

 Here we are in 2023 - with a blog that has now turned to Balancing on One Foot with cancer.