When nothing fits

Breast cancer treatment changes everything about your body. Everything. Every. Thing.

First I had surgery. That changed my breasts and torso. I went on the comfort food diet post surgery and prior to chemo, that changed how ‘fluffy’ I was. Next was chemo, that bloated me beyond all recognition. Another surgery to change my upper body some more. Finally, my oncologist gave me the news that I needed to lose weight if I wanted to reduce my chances of re-occurrence. Great. Just great.

I have never really had a problem losing weight, I just always found it again quite easily. This time I was going to need to lose it and keep it lost because chemo sucks. No two ways about it, chemo sucks.

Since chemo sucks and I truly want to do everything I can not to need to go through it again I researched diets and came across The Ketogenic diet. My next door neighbor was doing it with success, the neighbor across the way was doing it with success, so why not give it a go? Success in a community and numbers!

I lost weight, so did my husband. I had a target, I needed to get to a normal BMI, 24.9 is the top end, I am not greedy. I needed to get to a waist circumference of less than half my height in inches, who knew that was a thing, right? Ok, so let’s make this a game and do it right and have fun with it. We did, right up until it was time to go back to work and face that reality.

It was time to go back to work, short term disability was up and I was only taking one nap a day those days, my energy was coming back thankfully.

I went into my closet to check out my work wardrobe. I tried on one of my favorite blouses and it fit so differently, hanging in some places, tight in others, not a good look. Tried on another, equally poor fitting and unflattering. And another, and another. I cried on the floor of my closet for about 45 minutes because my wardrobe confirmed how I felt—like a stranger in my own body, honestly in my own life.

My husband tried to cheer me up by taking me to get a new outfit, all I got were some jeans, that was all I could bear. What I really wanted was something I was familiar with so when I went to work wearing my chemo cap, at least something was comfortable. Nothing was familiar anymore, I was worried about what work was going to be like after being off for so long, it was all too much.

I had a choice, mourn the loss of everything familiar or embrace the new me. It turns out I really like the word AND, I mourned the loss of all things familiar AND embraced the new me. Both were equally necessary for me to start healing in earnest. I adopted the hashtag #thrivingaftercancer. My surgeon did a double take at one office visit and belly laughed when I pointed out how lucky she was that she was about to see me naked!

When nothing fits, mourn the loss, seriously, take the time to truly mourn your very real loss. Find a kind and understanding seamstress and get a few things altered, and embrace the new you, its not easy but parts of it can be fun. Find your hashtag, take a minute to define the new you and run with it.

Advice

When you have a diagnosis of breast cancer, every well intention-ed person in your life will give you advice. It turns out I am no different, here is my advice: if you have no strong opinion about not following the advice and it cannot hurt you or interfere with your prognosis, follow it for as long as you feel like it.

What’s the harm?

A wonderful friend sent Essiac tea to me along with a book. I had time on my hands, so I read the book while drinking the tea. I drank the tea for the duration of my treatment. It made me feel close to her and like I was doing something to help myself, a sense of empowerment. Stopping drinking the tea was also a sense of completion, something formal I could do that signified the end. It was powerful.

There is not a lot about a breast cancer diagnosis that is empowering or makes you feel powerful in any way. To me, it felt like a runaway train and you have no choice but to stay on it, with your arms and legs inside, until it comes to a complete stop. Following someone else’s advice may seem contrary to feeling powerful, but it is your choice, you are doing it because you want to do something to help yourself. There is a side benefit of allowing someone else who feels powerless because of your diagnosis to know that they did something for you.

Now, making Essiac tea is a bit of a chore, it requires distilled water and to steep overnight, and a significant time commitment to filter it–oh, and there is a bit of a smell that accompanies it, so be prepared for that. It doesn’t really taste all that pleasant, but if you have ever taken a shot of bottom shelf alcohol and kissed a smoker, you are going to be ok. I drank it before I brushed my teeth both in the morning and before bed, that helped a lot!

Take a moment to honor those who took the time to offer some advice to you, know that they are doing so from a place of love and concern and that they, too, feel powerless and want to do something to help. If you truly cannot follow it for any reason, seriously–any reason will do, ask them for something specific. Specific like a meal on Thursday, take you to an appointment, vacuum the cat hair off your rug, edge your lawn, hold your hand while watching Netflix, send pretty/festive scarves, have a sleepover for your kids, freeze water bottles. Whatever you can think of, its a good feeling for everyone, truly. Especially if there is no harm! That is the end of this piece of advice!

When the wheels fall off

Wheels fall off. No matter how well you plan or how well you roll with it the wheels fall off.

Everything was going well with my diagnosis and treatment, you know…considering. I felt empowered and my mantra was “this, too, shall pass”. I have put up with a lot over the course of my life, breast cancer seemed difficult, but there was a plan, trained professionals and women who have blazed the trail before me. I figured, stay the course and this, too, shall pass.

One day after my fourth chemo treatment side effects began to wear off, I woke up and my face hurt. It hurt to smile, to talk, to chew, to drink, it HURT. I took an extra pain pill figuring this was part of the fourth chemo treatment, went to sleep and woke up in more pain. I contacted my oncologist, she suggested I take an extra Claritin, I dutifully took it and waited. When I went to see her, she saw the swelling and all of the sores and sent me to my primary care physician for an X-ray of my jaw to rule out necrosis. It was ruled out. Now it is day six of terrible face pain, I went to my dentist. He ruled out anything dental. Day seven still in pain.

Day eight I am ‘faking it ’til I make it” with my surgeon, who won’t schedule surgery until the root cause of the pain has been taken care of, she wasn’t fooled by the frozen water bottle on my face for an hour to take down the swelling. I cried, time was running out on my short term disability and this was the worst pain I have experienced and there was no path to relief. She suggested that I see my ENT. Day nine he is not taking patients. Day ten he takes one look at me and gets right down to business.

The last time I had seen him was a little over a year prior and everything was fine, in the intervening year I had been diagnosed with breast cancer and had four chemo treatments, lost my hair and bloated up like the Michelin Man. While it had been over a year, he knew a lot had changed, he was very respectful of all that I had been through and genuinely wanted to help relieve the pain with a proper diagnosis.

He ruled out my jaw. Ruled out my throat. Ruled out my ears. Ruled out my sinuses. Then he looked around my mouth and I jumped, he hit the painful spot — an infected salivary gland that was blocked with a stone. He showed me how that pain can present itself, it matched perfectly. Prescribed antibiotics the size of horse pills and a steroid as well as lemon drops to increase salivation. Then he said the magic words: “If you don’t feel like a new woman in the morning, let me know right away, I have two more things we can try. And if those don’t work, we will consult a neurologist and get everything from your neck up covered.”

It is amazing how much a proper diagnosis and a plan can relieve tension, I felt my shoulders relax–just a little. I filled the prescription, the pharmacist actually gave me a bottle of water because my doctor asked her to make sure that I took it on the premises and she threw in two packages of lemon drops. They were sour and they hurt my sores, but he said they would work and I dutifully sucked on them.

The next morning I woke up, cautiously smiled and felt NO pain. Took a sip of water, no pain. Spoke with my husband, no pain. Put my youngest daughter on the bus with a kiss, no pain. As I walked back in my phone rang, it was my doctor checking in, it was him, not the office staff. After we hung up, my surgeon called to see how I was doing, she could tell by the strength in my voice that things were better and she talked with me long enough to determine I wasn’t faking it. I genuinely felt like a new woman. and finished my antibiotic and steroid faithfully.

Ten days of terrible, unbelievable pain had ended, life had returned to some level of predictability. 6 months later I had an abscessed tooth, it didn’t even come close to the pain of that infection and stone. When the wheels fall off, and they will, don’t give up, keep pressing forward, because this, too, shall pass.

Why Survivor Sherpa?

Cancer doesn’t have to be a solitary journey.

Cancer does so much to change your life, your belief system, your sense of security and your sense of self.

You are not alone.

Survivor Sherpa is my desire to help anyone out there going through this know they are not alone. We want to help, we want to help because I was very fortunate in both my diagnosis and the circumstances of our lives, now I am thriving after cancer and want to help others to thrive as well.

Even though I am thriving now, there were difficulties, difficulties no one could have prepared me for and that I wasn’t ok dealing with.

Your medical team has all of the BIG things taken care of. You and your tribe have the DAILY things taken care of –mostly. There is a whole host of things in between that may need to be addressed in your circumstance and we are here to help:

  • Find local resources.
  • Find information without having to use a search engine for it
  • Have someone to talk to about those things you don’t want to talk with your medical team about –even with a good relationship, there are still those things

There is a lot you are going through and the information from your medical staff is like drinking from a fire hose, hopefully we can provide answers when you need them.

Basically, we want to be your sherpa for this journey so that you can concentrate on healing knowing that other ‘middle’ stuff is taken care of.