Fingers Crossed, Good Luck Charms, and Lucky Shirts

 

My husband is wearing his “lucky shirt.”  It’s his warm weather version of the lucky shirt, as there is a flannel shirt that carries the same designation when the temperature is cooler.  Today’s shirt is short sleeved, in kelly green, royal blue, and white.  My husband’s blue eyes look good with these colors. 

I’m not sure when this shirt got designated as lucky. Certainly, it was not in 2016 when I was first diagnosed.  Nor in the spring of 2017 when the swollen orange peel looking mess called for a punch biopsy and an ultrasound.  I know it wasn’t there when I did a follow up MRI in September but by then I had been diagnosed with Lymphedema and had been making weekly 2 hour plus round trips to help the worst of those symptoms.

Did he have the shirt, the following March, when they brought him back to me as I cried quietly on the bench? When they told me that a large number of cell clusters in my breast were too small and too many to biopsy. I would have to wait six months, SIX MONTHS, to reevaluate, to see if any or all were cancerous.

As I am riding in the car today, I reach into my purse to check for the third or fourth time to make sure that the old beat-up eyeglass case that carries my own good luck charms is sitting securely in one of the pockets of the purse.  My friend Jill had sent me a small angel, of clear plastic and purple, that was in the case.  An old, frayed post- it note folded into quarters that my husband had left for me, and I had taken with me to each medical procedure, consultation or surgery ever since, is also in the case. 

We’ve discussed, my husband and I, what the note says.  It has been so long since it was written.  It is too fragile to open and read.  “I love you,” I venture.  “Good luck,” he suggests.  Both? Neither of us remember but it is an important part of the ritual.

“I don’t want to do this,” I say. 

“I know.”  He looks over, reaches out his right hand so he can pat my own hand.

“I’ve been good this time,” I say.  “I haven’t said that as much as I usually do.”

He just smiles at me.

“What?”   “I have said this as much as usual?” 

He keeps smiling.

Since 2017, I have been driving to a center in a larger city, which specializes in breast health.  It had been my Oncologist’s idea.  Twice a year, alternating mammogram and MRI every six months, we would make the pilgrimage. The year of the Big Scare I had an extra mammogram and an  ultrasound.  They tell patients like me, breast cancer survivors, the results right there as you wait. No nervously waiting for a doctor’s call or a letter (though a letter is still sent) to know what they see, good or bad.  Compassion is telling the patient at once. I have hugged and been hugged in those changing rooms at that center.

Covid messed things up.  All medical procedures were cancelled, and my mammogram was delayed because of the closure of the center.  When they started seeing patients again, they called survivors and worked us in first.  It delayed the mammogram by a month.  When I saw my CNP at the breast surgeon’s office, I told her I wanted to forgo my MRI that Fall.  My parents were almost 90 at the time, and the Covid shots were almost a year in the future. I didn’t want to take any chances of infecting them, or let’s be honest, myself, either. My CNP agreed. I didn’t miss doing the MRI – not one bit.  

Breast Cancer, and I did not realize this until my own diagnosis in July of 2016, is an umbrella phrase for a number of different cancers affecting the breast.  If you are diagnosed with BC, then hope that they diagnosis you with something called DCIS – Ductal Carcinoma in Situ.  It means the cancer started in the milk ducts of your breast and has STAYED inside that duct.  It doesn’t matter how big it is, just that it didn’t pop through the wall and become IDC – Invasive Ductal Carcinoma.

About 20% of diagnosed BC are DCIS.  Yep, you still have to do surgery, maybe radiation, possibly take some pills, and it is not fun, but DCIS does not metastasize.  Of course, now you know your traitorous cells know how to mutate and cause cancer, so that sucks.

Once it goes invasive, however, all bets are off. Stray cancer cells can get into the lymph system.  Your lymph nodes are your body’s way of trying to keep those bad cells from taking a ride around in your lymph system, but once they reached the nodes, you have no way of knowing if they stopped all the cancer cells from getting through to your lymph system. 

Even if those bad cells don’t make it to the lymph system, cancer cells like to form where blood supply can feed them.  There is nothing to say a cell or two or more won’t hitch a ride in your blood vessels, traveling to who knows where.  And the really tricky thing about cancer cells is that they can hide and go dormant, just waiting for the opportunity to wake up and multiply.  That can happen in a week, a month, a year or several decades.

Treatment for breast cancer relies on tumor size, grade, the type of receptors, and whether or not it has the HER2 growth factor.

Breast Cancer can have estrogen receptors (the cancer feeds on the estrogen) and/or progesterone receptors.  You can have anywhere from 0% to 100% positivity in your receptors.  The higher the percentage, the more likely hormone blocking pills will stop the cancer’s growth.

HER2 growth factor, and you are getting this from a patient not a medical person, is a protein that acts like a fire chief at a fire.  Instead of calling for more water, the protein demands more cancer cells.  It probably won’t surprise you to know that this is a very aggressive form of cancer.  Somewhere in the vicinity of 15 to 20 percent of BC has the HER2 growth factor.  About 10% of all BC patients have estrogen receptors, progesterone receptors, and the HER2 protein. This is called Triple Positive cancer.  Did I mention it is aggressive?  Triple Positive is my type of cancer.

(Just a note:  If you are thinking that you would vote for having none of those receptors or HER2 because it must not be aggressive, you would be wrong.  Triple Negative is aggressive and right now, it has less therapies to throw against it than the other cancers. 10% of all diagnosed BC is Triple Negative.  Research is needed! Now!)

Because I had surgery to remove the tumor before I had seen an Oncologist, the treatment plan was going to be adjuvant (after surgery) rather than neo-adjuvant (before surgery).  In the case of HER2 positive cancers, they like to do the chemo and targeted surgery plan first so they can decide how effective the treatment has been.  My Oncologist, who was supposed to be my second opinion but I absolutely loved her, proposed the following treatment plan - six rounds of chemo – 2 different types- every three weeks.  At the same time, I was to be given two targeted therapies for the HER2 positive part of the cancer.  One would be for 6 sessions, the other for 18 sessions. Radiation after chemotherapy and hormone blocking pills for 5 to 10 years.

The notebook I was given said that I would feel the effects of the chemo for 3 or 4 days of each three-week cycle.  Nope, not me, I was sick for 16 days of the cycle. Many days all I ate were nibbles of potato chips and sips of lemonade, as that was the only measure we tried that stopped the nausea.  I ended up going in a few times for fluid IV’s and finally, my Oncologist said we would be stopping the chemo after 4 cycles.  She said to me, “We’re trying to cure you, not kill you.”  I didn’t argue.

One of the targeted therapies I was given was a drug called Trastuzumab, or Herceptin.  It targets a part of the gene for HER2.  It almost didn’t get a clinical trial, it almost didn’t make it to market, and it wasn’t until 8 years after being approved for metastatic HER2 cancer that it finally was approved for people like me.   The movie “Living Proof” (2008) and the documentary “I Want So Much to Live” (2009) tell the drug’s journey to the marketplace.   I think of it as a tiny miracle and it came very close to never existing!

The drug, however, did have drawbacks.  Before it could be administered, I had to have an Echocardiogram to prove my heart could manage the drug. Then, I had to have an Echo every six to eight weeks while I was on the drug.  It took a year, but I completed the 18 infusions.

I lost my hair – not just on my head, but eyebrows, nose hairs (I really missed them), and I now can pluck my leg hairs as opposed to shaving them.  I lost all my fingernails.  Not all at once, and not only one time.  My toenails bit the dust and my gastrointestinal track has never been the same. One day while I was at my desk barefooted, I looked down and thought that my whole heel had come off. It hadn’t.  It was the calloused part of my heels that had fallen off thanks to chemo. But my feet were very soft for a long time after that.

Two people who were 9 months and 16 months ahead of me, with the same cancer and treatment had reoccurrences early on. It’s not uncommon.  One before the BIG SCARE and one during. They had to do the chemo and targeted drugs all over.  I was devastated for them and terrified for me.

One of the women on the forum I inhabited, was cancer free from the neck down, but HERS2 likes the brain and that was where her cancer reoccurred.  She left behind two very young sons.  

A very sweet woman who was Triple Negative, who was diagnosed shortly after me and had a tumor about the same size as mine and no cancer in the nodes like me, metastasized.  She was such a good person and she shared research of all types of Breast Cancer. One day when she was having a rough time, I let her know how much her research and posts had meant to me. She answered me back and told me I had made her cry but in a good way.  We lost her in August 2022, and I still think of her often.  

My cancer was mentioned on an organization’s blog. The writer wrote that it “seemed” that I had “beat cancer.”  It angered me when I read that but it also hurt. She casually invalidated everything I had been through.  Every time I have an ache or a pain, extra tests are run on me, because of my history.  Last year, I had surgery on my eyes and the surgeon had the debris evaluated, to make sure there were no cancer cells present.

Blood work and annual scans cause me a lot of anxiety.  It always will.  I have no idea if the cancer will come back or if the drugs, I took may have damaged some other part of my body that will end up killing me.  Beat cancer?  You do not beat it.  You just keep showing up and doing what you have to with fingers crossed, good luck charms and lucky shirts.

On this day, I go in and have the mammogram while my husband waits in the reception room.  I am always trying to read the tech’s expression to see if I can tell anything.  The wait when she goes to show the radiologist my films is interminable. 

My husband tells me later as I come through the door to the reception area, I have a big smile on my face and I give him a thumb’s up (honestly, I  didn’t know I did that) and he knows without a word that I have received a NED verdict – No Evidence of Disease.  For today then, I am relieved.   Tomorrow is another day.

© 15 May 2024, Teresa L. Snyder, Desktop Genealogist Unplugged