The Journey Now: Part 3

When I got my mammogram results, I was furious!

To explain why, I have to digress a moment, and explain something about cancer survivors. We get lots and lots of cancer scares. These are the moments when we have the elephant sitting on our chest, but we get to tame it back up on the shelf. There are suspicious lymph nodes, shadows on ultrasounds, questionable x-rays and iffy mammograms. Each one causes the elephant to grow, each reprieve puts it back on the shelf.

The elephant
 makes itself known.

I had had just such a scare: my surgeon was sure that one of my lymph nodes was suspicious. My endocrinologist was doubtful. The FNA tech was downright dismissive.  And sure enough, it was just a little swollen. It remains a bit bigger than other nodes, and I know my doctor is going to keep an eye on it. But there was no cancer.

I go through a sort of mini-hell every time: what does this mean if it is cancer? Surgery? More RAI? Will it upgrade me to a higher stage? (The only stage left for my in the Thyroid Cancer department is stage IV  As with all cancers, it's the distant metastasis stage. With thyroid cancer, that means something slightly different, than, say breast cancer, but you still DON'T WANT TO BE THAT GAL.) 

So, when the findings came back, and it was clear that everyone but my surgeon was not concerned, I relaxed and got mad.  Another scare.  I had had plenty, in my time.  Looking back, almost all of them turned out to be something.  I got off this time. But I was still mad at having the stress.

I had recently changed doctors, and moved my care to a new health system: Henry Ford. It was the first time they did a mamm on me, but I brought some of the old ones for them to scan when I came in for my mammogram last August. 

A few days later, I awoke when my phone buzzed at 5 a.m. The mammogram findings came in. I read them sleepily. Radiologic resident Briana somebody found a 7mm area of suspicion:

Left Breast Findings:
There are scattered fibroglandular densities (25% - 50% fibroglandular). The patient has had previous radiation therapy and a previous lumpectomy. An area of focal asymmetry is present measuring 7 millimeters in the upper inner quadrant posteriorly. (Emphasis mine.)

IMPRESSION:

Breast Cancer Cells

LEFT BREAST: S/P previous radiation therapy and lumpectomy. Focal asymmetry measuring 7 millimeters in the upper inner quadrant posteriorly. Additional projections, spot compression and ultrasound are recommended at this time.

That's when the blood started to boil. 

Briana? This kid must be the age of my daughter, who is named Brianna. I'm a cancer survivor! Why didn't the head of radiology read my films? (He did.) Why didn't my doctor call me? (I beat her to it, basically.) I am not going through this again!

But I did. After I talked to our company Health Coach (I highly recommend them) who talked sense into me, I got the ultrasound. It was even bigger and hypoechoic and vascularized. That means the spot is a solid lump, and it has veins feeding it lots of blood. These are consistent with cancer, of course. I also looked at the x-ray myself. Now that I'm a "professional patient," I've learned to recognize when things are amiss. This mass was definitely not normal.

The Henry Ford team did the Fine Needle Aspiration (FNA) that afternoon. It was cancer, breast cancer, again. It appeared to be recurrent, but they would take a much closer look with surgery.  The only options available to me now are mastectomy and possible chemotherapy, depending on the tumor's properties. 

I met my surgeon, and liked him. I agreed to have it done at Henry Ford. (I had quite the struggle about going back to University of Michigan; I decided to move all of my care under one roof, eventually.) As with many surgeries, I got through it with flying colors, and I was ready to be back at it soon.  I lost the drain in three days.  The doctor removed the stitches in a week, and put steri-strips over the incision.

A few days later, as I am dressing the wound, it all bursts wide open.

Talk about panic! I screamed and I don't think Brian has ever moved faster. He had to squelch my panic by pointing out that wasn't blood I was gushing, just fluid. But I had to go back to the ER, and I was in surgery that afternoon.

My doctor was away, so his partner  -- well, actually, his partner's resident -- closed me back up again.  I didn't get those stitches out until December. Even then, I wasn't healed fully. It seemed I wasn't healing because the past radiation was slowing my healing mechanisms. I needed to be ready for the next step; I needed to be closed.  

I didn't stop bleeding until January 20 or so, long after we figured out what came next.

The Cancer Elephant Wakes Up -- The Journey, Part 2

The Next Adventure: My Thyroid

After more than a decade of cancer-free mammograms, I truly began to believe that I might never have to face cancer again. This illusion is the hope all cancer survivors have: that we are now cancer-free; that we will never again have to pump poison in our veins, wrestle with dangerous radiation; that we will walk away from our cancer elephant.

The cancer elephant is an analogy that I learned from someone early in my cancer journey:

My teal, pink and blue cancer elephant.

"Sometimes, cancer is like a decorative elephant. It sits on your coffee table: a part of your life, but not a significant one.  You dust it and keep it clean, but otherwise, you don't think about it.

Sometimes, the cancer elephant wakes up, and grows huge, and decides to sit on your chest. The secret is taming the cancer elephant."

My cancer elephant had been relegated to the bookshelf in the basement. I seriously believed that I would never see my cancer elephant again. Hah!

As I got older, I began to develop tooth problems that were persistently painful. For years, I chased a problem with my teeth, first number 30, then 31. I had root canals and had the root canals redone. The pain returned over and over. After years of treatment, I realized I had an allergy to the metal in my crown. Meanwhile, my thyroid received dental x-ray after dental x-ray, all of them unprotected by the most basic of protections: a thyroid collar.

A thyroid collar: make sure
your dentist uses this.

My poor thyroid! It had no protection at all! First there was the onslaught of radiation in the 90s. Now it was exposed time after time to the stray dental x-ray radiation, to my frequent flights -- to all of the radiation of our modern daily life.  It finally succumb to the cells that forgot how to die: I developed thyroid cancer.

I had just begun a new job; this job was awesome. One day, following a cold, I felt a bit of a lump on my throat, and my ENT sent me for an ultrasound. Well, that didn't go well..findings were "hypoechoic, vascularized", suspicious for cancer.  I found myself at a type of doctor I barely knew existed: the endocrinologist. Mine did a sloppy fine needle aspiration. I developed a huge bruise a few days later, and then I got the findings:  Crap! It looks like I have another cancer.

"Oh, but don't worry: if you have to get cancer," the doctor tells me, "this is the kind you want. This is the good cancer."

Really?  Did you just say that to me?

Let's clear this up right now: there is no good cancer. It offends Thycans (thyroid cancer survivors) when you say that; it minimizes their experience, which is far from fun. The reason the idiot doctors say that is because it is very survivable. You may live for decades with untreated cancer.  Most of the survivors will die of something else.  Thyroid cancer has its own special set of issues that change your life forever. The all-too-common medical myth minimizes the changes that each survivor faces (not a complete list): 

• Inadequate medication with some persistent side effects -- medication the patient must take to survive.  Allergies to the meds, weight gain, thinning hair, depression and low, low energy -- symptoms that are all too common amongst us. 
• Exposure to conditions caused by medication: being hypothyroid (too few thyroid hormones, or hyperthyroid (too many.) I was both at various points, and there is at least some evidence that that may have awakened my next cancer.
• Exposure to dangerous radiation, and possibly exposing those you love while you wait out your exposure. The doctors send you home!
• Problems with: voice (some never recover); saliva glands (this is painful); tear ducts; breathing, bad nails. Survivors develop diabetes from the weight gain (and it is impossible to lose weight, so stop judging); cognition and emotion regulation are impacted. 

Thyroid cancer survivors may deal with all sorts of issues -- thyroids affect nearly everything in your body. 

Thyroid surgery was not hard on me.

I quickly learned how inadequate thyroid treatment is: the medications they give you replace only a portion of the things your thyroid used to do, and the standard of care is remarkably insensitive. Thyroid medical science has made few gains in over 50 years. 

I soon had to change endocrinologists. I moved my care to University of Michigan. I had my thyroid removed there. The surgeon (who was brilliant!) performed a thyroidectomy and central neck dissection. She found a few nearby lymph nodes as well. 

The diagnosis:  papillary thyroid cancer, well-differentiated, stage III. (Well-differentiated means they can see the difference between the tumor and the surrounding healthy tissue. It's considered a good thing.) I'd have been stage II if I was younger. My survival stats say I'll die of something else, like most survivors.

I had the minimum efficacious dose of Radioactive Iodine (RAI) in order kill any remaining cells.  I have been on a journey ever since to balance my medications to optimize my well-being.

A word to those who are going through this. Some of us do just fine on the standard medication, called T4 or Synthroid. I was not one of them. I was tired, couldn't think clearly and I was depressed. The doctor added T3, or Cytomel. That allowed me some of my feeling of well-being to return. Others choose desiccated thyroid to replace all of the hormones the thyroid made.  I'd like to try that someday, but for now, I'm ok.

Once again, I returned to my work and minimized my time off. I plunged back in, to ensure that I would not be pigeon-holed into obscurity. In fact, I think I really brought some new ideas and some great work to my company for a few years, and they did reward me well. I loved working with my team. I put my elephant back on the shelf.

Until this year's mammogram.

The Beginning of My Cancer Journey -- Part 1

I was riding high in the 90s. I had recently run my state's 1996 Electoral College. I received awards for my work. I could practically cite every one of the 990+sections of Michigan election law, plus their court cases and AG rulings. I loved my work, and I worked hard. Few people could do what I did every day; administering the law and keeping democracy safe. My star was rising, despite a less than supportive boss, and a difficult work environment. I foolishly believed that, at 38, I could overcome anything.

 I lived and breathed the Michigan Election Code.

I hadn't met cancer yet. 

On my way to the office holiday party, I was adjusting my "party bra" when I felt something...it felt like a grape. Oh-oh. I called the doctor as soon as the office opened. In two weeks' time, I was at the surgeon, getting a biopsy. 

I would play poker with this surgeon: he couldn't keep the concern he had off his face. After the pathology came back "suspicious," I was under the knife in his office for the lumpectomy the next week. I watched him work in the mirrored light above me. It was Christmas Eve when I got my gift: the cancer diagnosis I dreaded. Intraductal carcinoma, stage 1, ER and PR+, HER negative.   

I had to go under for the lymphectomy (23, all negative.) Then it was a whirl: I had to teach my arm to reach, despite the adhesions, because radiation was coming soon. Radiation and CMF chemotherapy: that's what they prescribed. My funeral home director of an oncologist wanted me to have nine rounds.

Radiation went well, and the chemo was...fine. I knew I was in trouble at work, now that I was sick. I wanted to minimize the amount of time off work; I didn't want to be vulnerable. I missed less than a day of work throughout my treatment. I didn't lose my hair, though it got thin, and I remember feeling only a little bit tired. I was such a hero!

Yet the oncologist and I could not agree. I disliked his communication style, and I began to butt heads with him. I talked to my doctor, and she recommended another oncologist. She was wonderful!  She talked to me like an adult, and showed me why her plan made more sense for me: only six rounds of chemo; only one more to go.

My hair grew back, but I found myself in chemopause. I gained quite a bit of weight. Most importantly, I was a bit depressed, and very,very angry. I had little ability to suffer fools. I began to question my choices, my life.

The toxic environment in my office meant that the sharks were circling. My "friend" sabotaged my work. After I came back, I tried for a while. But one day, overwhelmed with the workload and with zero support, I simply walked out. I went on leave, but two weeks later, I launched my private sector career in technology, and I never looked back. 

Recovery took years and the after effects of chemo upended my life entirely. Yet, I went on to get a Master's degree magna cum laude, to launch an incredibly successful career, and to enjoy better health once again. 

I did encounter my second and third bouts with cancer a few years later: I developed both basal and squamous cell skin cancers. Each was excised, leaving me with scars that remind me every day that I need to care for my skin. For the next decade or so, I only sweated the mammograms. I had the illusion that I might be cancer-free.