Stories

Recently, I began asking my dad more about my mother’s family.

Even though my mother has been gone since 1987, my dad is still an amazing source whenever I’m craving insight into her family.   He has been and still is the go to guy when I want to know anything about my grandparents or mother.  I’m pretty sure if my dad ever took piñata form, and you knocked him open, nothing but stories would come falling out.  I may look exactly like my mother, but my personality is straight up from my dad.

I have written before about my grandmothers.  This time around, I wanted to dig a little deeper about the one who I barely remember or who I think I barely remember.  (Does remembering a deep smoker’s voice telling me to give her “some sugar” count as a memory?)  Who is my mother’s mother?

When I googled my grandmother’s name, I found out my great grandparents name, which I never knew before.  But I don’t want to just create a family tree, look at all the filled-in names, say, “I’m done,” and then pat myself on the back for doing such a splendid job.  I want to get to know these names, not just where they place in my family tree.

During my great family google, I even uncovered a great aunt’s name, which I had never heard (or maybe I had, but it had been so long that I had forgotten).  According to my dad, my great grandfather and his family arrived in Texas in a cover wagon.  My mom’s cousin told me that my great aunt was a loving woman who greeted beloved family members by kissing them and exclaiming, “I love you!”  Another cousin of my mom’s said that my mother made the best lasagna.

See, I did not know that.

My grandmother died when I was 3 years old of lung cancer, and my mother died when I was 7.  I’m not that close to my mother’s siblings since I have never lived in the same state as any of them.  I have these family members out there who I don’t know, and who don’t know me.  Sadly, I have these family members I will never know.

Every time I look at this photograph of me sitting next to my grandmother, where my face is so done up with so much makeup that I looked like a toddler beauty queen, it makes me laugh.  Man, she must have had a good time painting my little toddler face.   I wonder if she would have found my anti-girly girl personality during my teen-aged years to be unbecoming and would have had talks with me about how I could pretty up my appearance.

While pictures are great, stories are something else.  When I hear these stories, no matter how insignificant they might be to the story teller, my grandmother and mother come alive.  They become real people.  Any stories about these women slowly fill in giant holes in my heart that cancer created.  I don’t care if the stories paint either woman in a less than flattering light.  They were real life humans once, before cancer came along, and they had flaws just like everyone else.

I am third generation cancer.  I am sad that I never got to hear stories from my grandmother about what my mom was like as a child.  I have certainly never dreamed of shopping for wedding gowns since my mother and grandmother are no longer here.  Cancer took them from me, but lately, when I learn more about them, they are more than the disease that took their lives.  They are my family, and I know that I come from a line of women who will always be more powerful than cancer.

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Thyroid Cancer during Breast Cancer

“Ms. Huffman, have you noticed a fullness in your neck?”

This was the question I heard from my primary care physician, who I had gone to see for a mammogram referral, which would eventually lead to my breast cancer diagnosis.

“Yes, but I had a radioactive treatment several years ago to treat a goiter on my thyroid.  I had thought the treatment took care of that.”  Women on both sides of my family have had problems with their thyroid; my mom had her thyroid removed when she was 16, one of her cousins had thyroid cancer, and one of my aunts had thyroid cancer.

“Hmmm, I believe that may not be the case.  Regardless, you need to see a specialist and have this checked out further.”

For a period of almost two months prior to my breast diagnosis, I had numerous appointments for scans, biopsies and specialist consultations for both my thyroid and breasts.  My bosses, bless their hearts, let me have flexible hours at work to make up for the plethora of appointments.   If they hadn’t been so accommodating and helpful during that initial period, I surely would have lost my mind.

I was diagnosed with early stage breast cancer in late September 2010.   Several weeks afterwards, I met up with an endocrinologist to discuss the results of my thyroid biopsy.  He informed me that there was a significant chance I had thyroid cancer, too, and I needed to have my thyroid removed.

Being told that you may have cancer while you already have cancer, it’s surreal, to say the least.  My inner monologue was basically: “Hahahahahahahahahahahaha.”

Since the breast cancer was considered the biggest threat, treatment for those particular rogue cells took priority.  However, a month after I was done with chemotherapy, it was time for the thyroid to be exorcised . . . I mean, removed.

After the full thyroidectomy, I was a sight to be seen: bald, greyish pallor and sporting a giant neck wound.  The first night after my surgery, I fainted in the bathroom and woke up surrounded by unfamiliar nurses and doctors all saying my name really loudly.   Apparently, as I was falling down, I had hit my head and the nurse’s aide (who I had insisted that she stay outside the bathroom because “I’m an adult and don’t need help in the bathroom”) caught me as I crumpled to the floor.

It was a “fun” night after that, and I was sprung from the hospital on my 31st birthday.  Happy birthday to me!

It wasn’t easy trying to get my thyroid hormones leveled while dealing with radiation for breast cancer.  I felt tired in ways I didn’t think were possible.   Since I no longer had a thyroid, I take Synthryoid every day and will do so for the rest of my life.  I never wanted to be on a medication for the rest of my life before my thyroidectomy, but now that I am, I don’t care in the absolute slightest.  Given how much trouble my thyroid caused me in my 20s (i.e., untreated hyperthyroidism for years), my only regret is that I didn’t have it removed sooner.  When your thyroid is off, everything about you and how you feel is off.

Symptoms of hyperthyroidism (which I checked off most of them):

  • Difficulty concentrating
  • Fatigue
  • Frequent bowel movements
  • Goiter (visibly enlarged thyroid gland) or thyroid nodules
  • Hand tremor
  • Heat intolerance
  • Increased appetite
  • Increased sweating
  • Irregular menstrual periods in women
  • Nervousness
  • Restlessness
  • Sleep problems
  • Weight loss (or weight gain, in some cases)

Hypothyroidism (defined as a condition in which the thyroid gland does not make enough thyroid hormone) symptoms:

Early symptoms:

  • Hard stools or constipation
  • Increased sensitivity to cold temperature
  • Fatigue or feeling slowed down
  • Heavier and irregular menstrual periods
  • Joint or muscle pain
  • Paleness or dry skin
  • Sadness or depression
  • Thin, brittle hair or fingernails
  • Weakness
  • Weight gain

Late symptoms, if untreated:

  • Decreased taste and smell
  • Hoarseness
  • Puffy face, hands, and feet
  • Slow speech
  • Thickening of the skin
  • Thinning of eyebrows

I want to emphasize that if you think you could possibly be dealing with either hyperthyroidism or hypothyroidism, consult a doctor, who can order simple blood tests.   I felt off for so many years, and I had no idea it was because of an overactive thyroid.  I suffered from panic attacks, insomnia and a ravenous appetite that never let up.  Once a doctor figured out what was wrong and got my levels regulated, I felt normal again.

Dealing with thyroid cancer at the same time as breast cancer wasn’t easy or fun, but I’m beyond relieved that my thyroid is gone.  I admit that I miss my old chest often, but my thyroid?  Nope.  I hope it went straight to hell, which is where I’m sure it came from.

“Joe College” Book Report: Book 1 out of 35

Today I finished “Joe College,” written by Tom Perrotta.  This is the third book I have read written by Mr. Perrotta, and I am on the fence whether or not I will read a fourth book written by him.  I really liked “The Leftovers” but felt ambivalent toward “The Abstinence Teacher.”   I would probably rank “Joe College” above “The Abstinence Teacher,” because of the humor and sometimes absurdity of Danny’s story.

I appreciate that Mr. Perrotta creates flawed characters that you can root for one page and then become frustrated with on the next page.  “Joe College” tells the story of Danny, a Yale undergraduate student in the early 1980s, whose love life is complicated.   Danny is chasing a girl who is not really available, and running away from another girl.  He doesn’t make good decisions, and at times, he’s kind of a dick.  During his breaks, Danny comes home to New Jersey and helps his dad out by working on his lunch truck.  I thoroughly enjoyed a character who loves his parents, and wants to help his dad however he can.  That’s what endeared me to Danny.

Overall, I felt like there were some asides and flashbacks that didn’t really add anything to the story, and my attention span took a detour on these these… well, detours.  Mr. Perrotta quickly reels you back in, though.  I enjoyed the book, but there were way too many parts that lost my attention.

Is cancer the “best death”?

When the cancer community read the blog “Cancer is the best death,” written by Richard Smith, a doctor, it’s not surprising that it was met with a negative response.

So death from cancer is the best, the closest to the death that [Luis] Buñuel wanted and had. You can say goodbye, reflect on your life, leave last messages, perhaps visit special places for a last time, listen to favourite pieces of music, read loved poems, and prepare, according to your beliefs, to meet your maker or enjoy eternal oblivion.

This is, I recognise, a romantic view of dying, but it is achievable with love, morphine, and whisky.

When I first read that, my jaw dropped and major eye rolling commenced.  Did he describe dying of cancer, or was he paraphrasing a horribly cliched Hollywood movie he just watched?  Didn’t Nicolas Cage star in a movie of someone slowly killing himself with alcohol?

What I can remember about my mother’s death from breast cancer certainly does not reflect Dr. Smith’s romantic view of dying.  My mother spent a lot of time in treatment, or at church or with her family, trying to get in as much time in with her young children that she could.  She didn’t go on some soul-searching journey or adventure to cross off all those items on her bucket list.  She was in treatment for metastatic breast cancer and at the end, she died in a hospital, surrounded by her loved ones.  My mom only lived six months after she was diagnosed with mets.  She didn’t have time to visit any special places, unless you count doctors’ office and hospitals as special places.

Janet Freeman-Daily, a metastatic lung cancer patient who writes at Gray Connections, responded (please read the entire blog):

The reality is that death from cancer often does not conform to Smith’s vision.  Death by cancer happens when tumors cut off your air supply, compress your heart so it can’t beat properly, block your gut so you can’t eat, cause organ failure, erode your bones, press on nerves, or destroy bits of your brain so you can’t control your body or think properly.  Sound painful?  Without pain medication – sometimes even WITH morphine and whisky – it is.

As far as I know, Dr. Smith does not have metastatic cancer.  Ms. Freeman-Daily does, and she writes, unsurprisingly, a realistic view  and description of cancer.  Ms. Freeman-Daily also points out:

Among the lung cancer patients I’ve come to know online through their own posts or those of their caregivers, death can claim patients before they have established financial security for their family, raised their children, finished college — or even had time to recognize that they are dying. Many linger after they’ve lost the ability to do what they love, communicate, or think clearly. Most will eventually find themselves dependent on others for their basic needs while still aware of the emotional and financial stresses their illness imposes on their loved ones.

Some diagnosed with Stage 4 cancer may die within weeks or months of their diagnosis.  Others may live with metastatic disease for years and die after all lines of defense have failed.   I followed the blog of Vanessa T., who recently died of Stage 4 breast cancer.  Her family loved her so very much, and watching her slip away because of the mets to her brain was horrible.  How could anyone see anything romantic or ideal about her passing at such a young age?

Marie Ennis O’Connor also wrote a response to Dr. Smith’s blog:

Not everyone who dies of cancer has this peaceful idealised death. My own mother’s death from brain cancer was  far removed from romantic.  Both men write of a dignified and peaceful death, along the lines of our work here is done on earth – but what of the young mother with metastatic cancer who desperately wants to be there for her children growing up? Is love, morphine and whisky enough to ease her pain?

The most offensive, mind-boggling part of Dr. Smith’s blog post was this:

But stay away from overambitious oncologists, and let’s stop wasting billions trying to cure cancer, potentially leaving us to die a much more horrible death.

I will contend that there are probably cancer patients out there who continue with various treatments, only to make their remaining weeks or months excruciating and painful.  They might choose to do so because they feel pressure from their families to continue on, or they are relying on possible false hope given by medical professionals (possibly the “overambitious oncologists” Dr. Smith is referring to?).  You know what, though?   If a patient does make that choice and they are of sound mind, then their decision should be respected, not pitied or judged.   To take away someone’s hope, no matter how unrealistic it may be, would be cruel.  Perhaps an oncologist may be overambitious, but what if the patient wantthat type of attitude and approach?

Nobody knows what they will do when faced with the hard decisions that terminal cancer patients deal with during their treatments.   As much as I loathe the word, I will use it here: dying is very much an individual journey.  I pray that those facing these decisions aren’t pressured to keep going on if they want to just live out their remaining days without debilitating treatments.  When terminal cancer patients decide it’s time to stop, those decisions should also be respected.   People should be allowed to die with dignity.  These broad statements, like the one Dr. Smith makes, implies that terminal patients should just check items off their bucket list and die already.

I will never ever agree with the statement that we should stop “wasting billions trying to cure cancer.”  Nope.  Cancer research has saved lives and will continue to save lives.  The money being spent and used on cancer research is priceless to those with metastatic disease  who don’t have the gift of time or people like me, in remission, who pray to God that my disease doesn’t come back.

But it’s not like I have a choice in the matter.  Cancer doesn’t work that way.