Twelve Years Ago

I’m tired. My eyes are stinging from lack of sleep and the realization that I likely didn’t get enough sleep today, but whatever.

I just finished drafting and sending a long overdue email to my mom’s oncologist to thank him. Jesus, how do you thank someone for saving your mom’s life? All my words felt trite, silly, trivial, but I still felt compelled to send the email.

So, I did.

I can’t believe that this November will mark twelve years. Twelve years ago, my mom and I sat in a local coney island restaurant when she received her diagnosis.

Sarcoma.

I still remember that day like it was yesterday. My mom’s biopsy had been days earlier and we were all anxiously awaiting the results. As we dined, her cell phone rang.

She answered. She dug around in her purse for a pen and began writing on her paper placemat. My heart sank. I had a feeling this wasn’t good news if it required written words on a cheap diner placemat. My mom began scribbling while she spoke.

“Sarcoma?”

Her scribbles continued. More words, most of which I cannot even remember now, but the one I remember the most was

sarcoma.

fuck.

As someone just entering nursing school, I knew that any word ending in -oma didn’t always hold great promise. Sarcoma is defined as a malignant tumor of connective or nonepithelial tissues.

I can look back and type all of this now without pausing to grab a fucking kleenex, wipe my eyes, cry angry tears, and wander through my days trying to muster up the strength to be strong for the one of the people I loved most in this entire world.

But, those feelings are still very raw and real. My mom and I comment often how we never really forget that time in her life, but as the time passes, we see it move further and further away in life’s rear view mirror.

Unfortunately, I’ve heard the word ‘sarcoma’ uttered very recently again. This time it’s affecting a peer.

fuck.

I really hoped I could go the rest of my life without hearing that word used in conjunction with anyone I know.

Cancer is insidious and evil and indiscriminate. It doesn’t give two shits about anyone or what good they bring to the table.

And after hearing this word again, I was immediately transported back to that coney island, sitting in that same booth across from my mother as she wrote the word

sarcoma.

So, the fight begins again. And yes, I can sit here and type words like ‘fight’ and ‘hope’ because my mother is living proof that there are badass researchers, doctors, nurses, surgeons, and other medical professionals that make all the difference. She is LIVING PROOF of such medical advancements.

So, you can just fuck right off, cancer.

You’re not welcome here.

November Rain, Part Three

Hello, Sarcoma.

I see you came here today with your A-game.

That’s good. You’ll need it.

After my mom’s rather pessimistic visit with her surgeon, we met with her oncologist yet again. This time I was prepared. I was ready to do battle. I was armed with a notebook, filled with questions, clinical trial studies, names, facilities and procedures. I left nothing to chance. We were faced with the reality that we had some tough choices to make, and I was going to help my mom make the best possible decision based on all the information gathered.

The oncologist said, “Juli, if I thought that we were at the end of the road, I would tell you. I wouldn’t sugar-coat it.”

I believed him.

I opened up my notebook, ready to do battle, prepared to spar with the notes contained inside.

The battle was never waged.

The oncologist told my mother of a clinical trial that was being done regarding successful outcomes for sarcoma using chemotherapy previously used for advanced breast cancer.

Let’s review.

My mother had Stage III, high-grade malignant fibrous histiocytoma, not otherwise specified.

I had read of these clinical trials. I knew the lead researcher was sitting right in front of me.

Tears welled in my eyes. Mom looked at me, quizzically. She didin’t understand. The entire time, my mom relied upon me to translate the jargon, explain the meaning behind treatments, procedures, side effects and outcomes. I smiled at her. She smiled back.

This was good news. We were going to begin a new treatment regimen that would hopefully shrink her tumor and allow her to get the surgery needed to remove the mass and keep her great vessels intact. Treatment would begin that week. The schedule of treatment meant on chemo days, mom wouldn’t be there all day, but rather just a few hours. She would have her treatments a few times per week.

This seemed good.

We left that appointment with a renewed sense of courage. A newfound sense of hope. Hope is a dangerous word. Hope always seems to paint a certain picture in my mind. In my mind’s eye, I see Hope as a rock climber. Hope is this nameless, faceless being, clutching to the end of a rope, dangling at the precipice of some life-changing decision. Hope is stagnant to me. People hope when they have nothing else.

I wanted this feeling to pass. This feeling of utter helplessness and pity. While millions of people around the world are diagnosed with cancer every single day, it doesn’t make the situation any easier to deal with or accept. Surrounded by friends and family who were previously diagnosed with cancer didn’t make this bitter pill any easier to swallow. We never felt more alone than we did during this time.

My mom dove into her new regimen with renewed gusto. I accompanied her to her treatments and watched as the life seemed to literally blossom within her body. She seemed happier than she had been in quite some time. I could see her fighting back against the cancer that had taken up residence inside her body. She smiled a bit more. She cried a little less. She laughed at my ridiculous jokes.

I love this woman.

Her treatments progressed. We found ourselves toward the end of the regimen and another CT scan was ordered to measure the size of the tumor. It was only at this time did the smile fade from my mom’s beautiful face. We had been here before and it hadn’t turned out well. We could only wait, hope for the best and see what the results said.

We knew what needed to happen. The tumor needed to shrink down enough to pull itself away from her great vessels and allow the surgeon to go in and remove it with clean margins.

We knew this.

I will never know the reasons, but for whatever reason, the tumor decided that perhaps it had done enough damage. It had wreaked enough havoc.

The treatment had reduced the tumor from the size of a golf ball to the size of a small marble. The CT scan showed it had remarkably pulled away from the great vessels. We were now given the green light for surgery. The surgeon was amazed. In her entire career, she had never seen such response to treatment as what she was witnessing at this time. We were flabbergasted. Speechless. Shocked. Surprised. Happy. Cautious.

As only other cancer patients and family members know, there is always that nagging feeling of doubt. That feeling of dread. That feeling that regardless of how positive something may be, there is always the chance of having Hope pulled right out from under you.

We were cautiously optimistic at the news.

Surgery was scheduled within the week.

(to be continued….)

November Rain, Part Two

My mom has cancer.

Yeah.

Not just ANY kind of cancer, but sarcoma. Sarcoma is one of the rarest of all cancers, occurring in approximately 1 percent of all newly-diagnosed cancers each year. The most common form of sarcoma is osteosarcoma, which often is found in our long bones of our bodies, i.e. femur. My mom couldn’t have come up with a “common” form of sarcoma. Oh no. She had to develop an ultra-rare form. She was bestowed with the dubious distinction of having “MFHNOS” – malignant fibrous histiocytoma, not otherwise specified. Bottom line? It was really fucking rare. So rare that no real reliable, scientifically-based treatments existed for it. Sure, there were clinical trials, but still…we were faced with more questions than answers.

As my mother’s surgeon suggested, my mother sought treatment at the University of Michigan Comprehensive Cancer Center in Ann Arbor, MI. After a call was placed, she was referred to an oncologist to start the ball rolling. This oncologist would review her scans and biopsy results and come up with a plan of attack.

We were still numb.

My mom immediately displayed the bravado of Conan the Barbarian. She was stoic, matter-of-fact and quiet. I, on the other hand, dove into this cancer with both feet. I’m not sure if it was the soon-to-be nursing student in me, the daughter or just the person on the sidelines that decided to take on this role. My mom didn’t say no to my help. She seemed to welcome the thought of someone else listening, asking questions, helping her come up with the best options. I vowed I would remain by her side.

Within days we found ourselves in a treatment room in the clinic of the Comprehensive Cancer Center, talking with the oncologist.

One thing I immediately discovered about oncologists is they deal in a reality that most other physician specialties never encounter.

There’s a very good chance their patients WILL die.

The oncologist was very matter-of-fact, outlined the treatment options and specifically told my mom that it was her decision and her decision alone. He wouldn’t sway her in any direction.

She had a decision to make.

She ultimately went with chemotherapy. Her regimen included doxorubicin, ifosfamide and mesna. The treatment meant she had to endure chemotherapy at the infusion clinic for 8 hours one day every two weeks.

It was hell. The mouth sores, the nausea, the lack of appetite. All the things you hear about cancer treatment.

And the hair loss.

If there’s one thing I know about my mom, it’s that her hair is her crowning glory. She will freely admit to her hair vanity. She will also tell you that losing it was by far the hardest thing she had to endure with cancer treatment. Not the chemo, not the radiation that ultimately followed, but the hair loss. It completely devastated her. For those who think this is shallow, fuck off. We all hold something dear to our hearts when faced with adversity. For some it’s hair.

I have so many memories of my mom during this time. Some are funny. Some are poignant. Some are just plain heart-wrenching.

I remember one night in particular.

I worked evening shift at a local hospital, and I can recall having this nagging feeling that I just NEEDED to see my mom that night. She lived only five minutes away on my way home from work, so why not? I called her.

“Mom. I’m coming over after work.”

While normally this would cause mom to question my motive, I could hear the exhaustion in her voice.

“Ok. I’ll leave the door open.”

11:15 P.M. couldn’t come fast enough. I found myself watching the clock and growing more anxious with each passing hour. Finally it was time to clock out and get the fuck out of there.

I got in my car and drove the few miles to my mom’s place.

I walked in, tiptoed to her bedroom and peered in the doorway. There she was. My mom. The woman who had at times single-handedly raised me from infancy. The woman with whom I shared more than DNA. This woman was MY strength. MY hope. MY confidante. MY rock. The tables had cruelly been turned with this shitty diagnosis. I now found myself in the unenviable position of being all of those things to her.

My mom laid there in her bed with her back to me.

Her bald head shone in the moonlight.

I took off my shoes, my coat, and I slid into bed beside her. She was so cold. She was shivering. I spooned her from behind, using my body to warm her. I held her tight and felt hot tears sting my face as they slid on to the cold pillow. I reached up to caress her soft, cold bald head. She was crying.

This could not possibly be happening.

Fuck you, cancer. You can’t have her. Not tonight.

We didn’t say a single word. We laid there for hours, me warming her with my body, slowly feeling her relax and listening to her breathing become more rhythmic as she drifted off into sleep. Only when I was confident that she was asleep, did I slowly pull myself out of her bed and quietly exit.

It’s still difficult to recount that night without shedding a tear. Or two. Or needing to take a break from writing this to go get a tissue.

Anyway, her treatment continued and after two more rounds of the current regimen, a CT scan was ordered to measure the size of the tumor to see if it was responding to treatment.

The tumor was getting bigger.

Bigger? What the fuck was this all about? We thought chemotherapy was supposed to SHRINK tumors. Apparently, the tumor didn’t get the memo. Our worst nightmare had become reality. The tumor was now definitely too large to remove safely and with clean margins. The surgeon delivered the worst possible news:

“Juli, the tumor is not responding to treatment. I am unable to proceed with surgery to remove it. You will have to follow up with your oncologist to see what other options may be available. The most I can do is debulk the tumor, but that will not remove it, and ultimately, will not contain it.”

My mom seemed confused.

She never quite understood what that meant. She didn’t understand that debulking was really a futile attempt to buy her more time. She firmly believed that the surgeon could just easily go in, remove the tumor, give her clean margins and somehow fuse together the great vessels that were involved.

Let me back up.

My mom’s tumor  was on the right side of her neck and had decided to wrap itself around her great vessels, thus ensuring that any treatment would rely on chemotherapy shrinking the tumor significantly so as to pull the tumor from these vital areas. The tumor really picked a shitty spot to take up residence.

I immediately jumped in at this point. I added, “We plan on following up with the oncologist to investigate other treatment regimens, clinical trials and discuss how soon we can begin.”

What I didn’t have the heart to tell my mom was that we were indeed at a crossroads.

It was time to face the music.

Her mortality stared us in the face that day.

We stared back.

(to be continued….)