He Who Must Not Be Named

 

 

 

“Cancer,”  the solemn answer so often whispered when asked about a person’s devastating illness or untimely passing.

When you say the word cancer, do you kind of whisper it? I do.  I wish I could remember the movie in which the characters talk about this- when a word is associated with death or something dreaded it’s too scary to say out loud so we tend to whisper it.  I’m guessing it isn’t just me and the characters in that film who feel this way.  

In the first Harry Potter book we learn along with Harry about He Who Must Not be Named.   I suppose like the characters in the series we fear that if we say the word cancer aloud we will somehow be invoking doom upon ourselves.  In Harry Potter and the Sorcerer’s Stone Dumbledore encourages Harry to use Voldermort’s name. “Call him Voldermort Harry… Fear of a name increases fear of the thing itself.”   Maybe it’s like that with cancer.

When I was a kid, we never went to the doctor.  Basically at my house if you were seeing a doctor you were either in the ER with a fishhook in your eyelid or you were being admitted to the hospital for an emergency appendectomy, so I’m not really sure how I became so medically motivated.  Let me explain. I’m pretty much the biggest hypochondriac you have ever met. I’ve never been a run to doctor kind of hypochondriac, instead I am a Web MD, Google those symptoms  kind of hypochondriac.  Prior to the web, I would actually go to the library and look up my symptoms in giant volumes of medical conditions. I’m not kidding.  I would stand there between the stacks sure my liver was about to quit  or I was about to experience a stroke.   I have completely convinced myself on numerous occasions that death was close at hand. Liver cancer has always been one of my biggest fears and the threat of pancreatic cancer has gripped me. Brain aneurysms also make my list of likely ailments and one of my most far out fears is death by poisoning.  When I was a junior high aged kid some jerk in Chicago put poison in Tylenol bottles –  cyanide I believe.  I have never gotten over that.  I struggle, really struggle, with taking the first capsule out of a bottle. For many years my twitching eye and tingling hands had me convinced I was developing MS. I know it may sound like I am being disingenuous,  but I swear I have spent hours agonizing over real and imagined symptoms. I always stop short of seeing a doctor though.  Not because I think my symptoms aren’t real, but because I am too afraid to say it aloud.  I’m too afraid to have a doctor confirm my suspicions.  I’m too afraid to know the truth. “What if I am dying?”  I would rather not know. Still, I drive myself and those closest to me crazy as I fret and fixate on these conditions. Over time my symptoms will subside and for a while I will be free of  fear. Sadly, thoughts and new symptoms  will creep in and consume me and I will be back online. Have you ever seen that meme that says, “A worried mother does better research than the FBI.” I completely agree with that one by the way, and along those same lines I would say, “A hypochondriac does more thorough research than a medical fellow.” That’s why when the lump in my left breast first formed and then, began to grow quickly, I googled extensively.  I was sure I had a fluid filled cyst in my breast.  In my initial research I found caffeine consumption was  thought to contribute to the  development of such cysts.  This gal ran on diet coke for about 15 years so of course that’s what is was, right?  Since this was  something that has to be taken care of, and wasn’t just going to go away, I actually went to the doctor.  My doctor’s nurse practitioner thought I might be right and I left that first appointment thinking I was in the clear.  This little cyst will be taken care of in no time.  She sent me to have an ultrasound to confirm our findings.  Notice what I did there?  Our findings.  Like I said, my research skills are second to none really.  I made the appointment for about a week later.  That lump was growing so fast.  I swear, it had doubled in size by the time I got  the ultrasound, but it was a cyst and I was still drinking diet coke so… After the ultrasound I returned to my doctor’s office and saw the nurse again. About another week had passed and that old lump had continued to grow. “It’s not a cyst, it’s a mass.  You need a diagnostic mammogram.” Words like well defined and encapsulated entered the dialogue.  I made mental note of these words for my google research that night.  I called Steinberg to schedule the appointment and their first available slot was mid September- a lifetime away. I grumbled about  our crummy new insurance plan and the close to a month wait  but set the appointment.  Armed with new information I sat down to google.  Using my new arsenal of terms I quickly diagnosed myself with a fibroadenoma.  For the next day or so I was content with my research but the lump seemed to be getting bigger each hour.  There was no way I could wait a few weeks to have that mammogram. I called my doctor’s office to ask if there was any way they could expedite the process.  They told me my insurance wouldn’t approve a stat order so I would have to wait.  I called my darling friend who works at West Valley Imaging. Before a massive overhaul to our health plan we were able to have diagnostic tests done at their location.  I asked her how much it would be to do a test there with her. It wasn’t cheap but both my husband Doug and I agreed waiting was not an option.  I really felt like I needed some answers.  My pal worked her magic and I was able to see her the next business day at 8:00 AM.  I spent the entire night on the computer.  My google searches had gotten more specific.  I added rapidly growing, painful and disfiguring to the my previous searches.  The night before I went to see my friend Carol I had my first encounter with the word phyllodes, a rare form of cancer, right there in my kitchen. I showed Doug what I had found and announced, “This is what I have.”

The next day after the usual hugs and chatter, I stood shirtless in Carol’s relaxing exam room.  I told her about all of my research and asked her if she knew anything about phyllodes tumors.  She said she knew very little about them. I wasn’t surprised.  My research told me they were very rare. When the exam was done Carol sent me on my way. She is always encouraging and hopeful.  She too used the terms, encapsulated and well defined  but I could see a little look of concern on her face that day as she told me I would need a biopsy to get any conclusive results. “I’ll be praying for you,” she said as I left her that day.   This just got real.  

Driving home that day I allowed myself to think the thought I knew would consume my hypochondriac self from this point forward, “Do I have cancer?”

Well, I did in fact have cancer.  It was the phyllodes tumor I had read about. Rare, fast growing and unpredictable.   After having my left  breast removed, I went in for an additional Pet Scan and lo and behold they found a second,”more typical” cancer in my other breast.  Surgery number two to remove my other breast  happened just a few short weeks after surgery number one.

When my pathology reports came back after surgery number two, things looked good.  Here is my medical speak- Clean margins, no lymph involvement and my cancer is ER and PR positive.  ER  and PR positive means that my cancer gets its fuel from the hormones in my body.  This is a good thing because the drug Tamoxifen which blocks the body’s production of estrogen, can be used to help lower the recurrence rate in cancers such as mine.

During the first visit  with my oncologist, Dr. Thummala, following my surgery,she prescribed the drug and told me to start taking it straight away.  Neither Doug or I had ever heard of the drug so Doug asked her about the side effects.  Dr Thummala said something very cryptic in return along the lines of, “You believe that once you are married to someone it’s forever right?”  Doug answered her, “Of course.”  “Well,” she said,”Tamoxifen is the only drug that your wife can take, and she needs to take it.So whatever the side effects are she will just have to put up with them.  Kind of like marriage, right?”  and then she laughed.

When we got home I googled Tamoxifen.  I will post here some of the comments I found from women who are taking the drug:

 

A few weeks ago I started taking Celexia to combat anxiety and severe depression

I am feeling lots of dizziness and vertigo

WEIGHT GAIN??? Is there anyone who can succeed in losing weight on this drug.

Leg cramps!!! Wow….I’ve been on tamox for almost 5 months and have had mild foot cramps all along that I can stretch out to relieve…..but yesterday I had nearly debilitating cramps

Need advice on best bedding to manage night sweats! Waking up wet several times a night

Has anyone else found their hair is thinning on Tamoxifen

I’ve been on tamoxifen since August. Apart from the usual symptoms hot flushes, joint pains, headaches, insomnia and mood swings I’ve noticed rashes and dry itchy patches on my legs.

I’ve been on Tamoxifen for close on 3.5 years and have had chronic insomnia

Been on Tamoxifen for a year now. After many attempts of working out at the gym and on a strict meal plan I am still struggling to lose weight especially around the middle section.

So, um, ya.  I was seriously scared to take the drug.  The list of side effects on the drug insert was as long as my arm and included all of the things mentioned in the comments above: anxiety, depression, weight gain, leg cramps, bone pain, night sweats, hot flashes, thinning hair, insomnia, mood swings, and rashes. The insert also listed more serious things like risk of possible endometrial cancer, cataracts, and pulmonary embolism.  These mild and more serious side effects are just a sampling of what’s possible.  And what’s more, on the message boards and in the facebook support group page many of the symptoms seem to be commonly had by many women taking the drug.

I filled my prescription and then stared at the bottle for a few hours.  I mentioned earlier I have  that weird and irrational fear having to do with the Tylenol and cyanide incident of 1982.  Anyhow, another little caveat, if you will, of that fear is I never take a new pill, be it prescription or otherwise, without a witness.  So I decided I couldn’t start the Tamoxifen until Saturday when Doug was home.  That way if I had a strange or allergic reaction to the pill…okay, or if it was poisonous, Doug would know what I had taken.  Is that the dumbest thing you ever heard?  I know it is, but it’s been a very real fear of mine since 1982.  

In the days leading up to my first dose I prayed a lot.  I prayed that my side effects would be minimal.  I prayed specifically that I would not experience depression and mood swings. Okay, alright, I also prayed about the weight gain, but mostly I prayed about the depression.  Here’s why.  In 2003 I had a miscarriage. I was only a few weeks pregnant and had been experiencing horrible morning sickness, and extreme mood swings during the weeks of my pregnancy.  After having the miscarriage I found myself completely depressed.   This was new to me.  My go to emotion on the negative side of the scale is anger.  Anger pumps you up.  I can do things when I’m angry. You should see how clean my kitchen can get with a little angry elbow grease. And because I can do things when I am angry I can sometimes work that anger into productivity and even better I can work that anger right out of my system.  But depression is different. It slows you down. It stops you dead in your tracks. It consumes you. So after I had that miscarriage I had my first ever experience with depression.  I wish I  had a songwriter’s voice or poet’s words so I could adequately describe how I felt during those few weeks.  There are few periods in my life that I would consider as difficult as those wretched weeks. I was completely despondent and unable to function.  I remember waking up each morning and for a just a second thinking, “Oh it’s gone.  I ‘m me again,” but before the thought would take shape the dark mist would creep back in and envelop me.I didn’t eat.  I didn’t interact with my family.  I didn’t read or write and perhaps most damaging, I didn’t pray. One thing I distinctly remember from those weeks is this, my vision changed.  I mean it.  I felt like I was looking at the world through some weird lenses. It was as if  everything had gone dim.    I was lucky, though.  My sojourn into the world of depression was short lived.  

The pregnancy and miscarriage had caused a temporary imbalance of my hormones so in a few short weeks the fog lifted.  I was also blessed with an understanding husband who prayed for me morning and night.  He carried our family during those weeks and because of his creativity and diligence our kids were mostly sheltered from the ordeal.  Once I felt like myself again and returned to my routines I had the distinct impression.that I was given that trial so I would have an added measure of compassion when It came to others’ struggles with depression.  Prior to my own season of sorrow I had always viewed depression as something one could will away.  I would think, “If she would just get up and get moving,”or, “She just needs to think positive thoughts,” not at all comprehending the grip depression can have on an individual.

So when I saw depression listed as one of the most common side effects of the drug I felt a great deal of trepidation. I still remember the despondency I felt during my short battle with depression and it was something I hoped to never feel again.

 

Back to me staring at the bottle.  I realized not taking Tamoxifen was not an option because like it or not, I have cancer. This drug  greatly reduces the risk of  recurrence in women with ER (estrogen) positive breast cancer.  I had to take this drug and live with the side effects, whatever they might be.  I told myself if the dreadful and dreary mist of depression crept back into my life I would be prepared to address it as best I could.  In Elder Holland’s “Like a Broken Vessel,” he reminds us:

 

Above all, never lose faith in your Father in Heaven, who loves you more than you can comprehend. … Never, ever doubt that, and never harden your heart. Faithfully pursue the time-tested devotional practices that bring the Spirit of the Lord into your life. Seek the counsel of those who hold keys for your spiritual well-being. Ask for and cherish priesthood blessings. Take the sacrament every week, and hold fast to the perfecting promises of the Atonement of Jesus Christ Believe in miracles. … Hope is never lost.

 

With that counsel in mind and my wonderful husband by my side I accepted my situation with equanimity and swallowed my first dose of Tamoxifen.  That was over a year ago.

 

Exactly one month after Dr. Thummala gave me the prescription I found myself back in her office.  “How are you doing with the Tamoxifen?” she asked.  “So far, so good,” was my simple reply.  I was grateful when she shared with me that most who experience the more dreaded side effects start to feel them shortly after they begin taking the drug. “I’m in the clear then?” I  inquired. “Seems you are,” came her response.

So here I am, over a year in, and I’m still feeling fine.  I am immeasurably grateful for this drug that is lowering my chance of a recurrence.   I’m perhaps equally as grateful for the small experience I had with depression that gave me a better understanding of the disease, but am immensely grateful I am not experiencing that dark side effect of this drug.