Sunday, January 19, 2014

The cancer divide in friendship: An elephant in the room

Generally speaking, I am a grateful person.  I try to look at the ways that my life is blessed, with my family, with friends, with opportunity.  Even with LFS, there are blessings.  Sure, there are the crappy genetics, the medical bills, and the absurd things we have done medically speaking, to generate such bills. But, I also have some incredible friends that LFS has brought into my life.  I look to that, when the rest becomes overwhelming.

Because my LFS friends understand what this is like.  They laugh at my inappropriate cancer jokes and make many more of their own.  Like the Hispanic tradition of the Day of the Dead, where they have a picnic in the cemetery, we try to laugh at cancer and the difficulty that it brings so that we can still be the focus, not the disease.

We live with this.  We are focused on living, trying to make a difference, each in our own way.  The ways are as varied as we are, individual and unique.  They are beautiful, these friendships.

Despite being grateful for bringing me some terrific friends, LFS and cancer really piss me off.  My friends have be plagued with cancer in the past.  But my friends have become very busy with cancer in the present, and aside from how crappy that is for them personally (that is the grossest of understatement, btw) it changes how we are.  Or, better stated, I have let it change how I am.

Over the past two years, I have had the misfortune of generally having the crappiest story in the room, pick any room and any group of people.  I am not saying this to 'woe is me,' but objectively speaking, this is probably true, aside from the LFS conference I attended in Boston.  So, socially, my focus has been on making people around me feel ok with our situation. I have become fairly adept at this, perhaps because I have become accustomed to our craziness, and I truly try to focus on the good we are afforded.

Over the past couple of months, my very first LFS friend has grappled with a far crappier situation, learning that her cancer has returned in a most unwelcomed way.  I suddenly discovered that I no longer had the toughest story in the room.  I have fears for Mallory.  I have felt helpless.  I have been paralyzed.  At times, my conversation has been stilted, cautious. My usual strategy, to roll out the social niceties, and smooth over the awkwardness, bridging over the elephant, was not applicable.  I didn't know what to say.  I foundered.

Do I share the everyday things, the silly events common to motherhood, the mundane aggravations?  Should I lay bare the worries that I have about my kids, which are only potential problems, in stark contrast to her actual problems?   What do I do with the joy that I have about my family living in a place of relative health?   It was hard fought, this little piece of medical quiet. There is some guilt, however irrational, for the joy.

These things seemed so unimportant, and unworthy by comparison to her challenges.   I had allowed cancer, the disease, to interfere with my friendship with a person.  I was dis-eased, uneasy, unsure of how to speak with my friend.  That really makes me mad.

I spoke a few weeks ago with another friend who has been amazingly supportive of me over the years and I shared this realization with her. I confessed to her that I didn't know what to say to my LFS friend.  I couldn't give Mallory what she needed most.  I couldn't make this better. I was inadequate to the task.  I was miserable, just thinking about it.

Monica, smiled kindly, most knowingly, because she has been where I am now.  She gently told me that I should just be who I am, and give generously of my heart, knowing that while I will stumble, and will likely say the wrong words, that a generous and loving heart will certainly come through.  She pointed out that she has been doing this for me, for years, this not knowing what to say.  I need to just be me, and be available, however I can. 

I pick smart friends for a reason.  I am compensating for my own stupidity.

This week I have had more LFS friends reveal that they are back on the cancer train...I am mad.  I am worried.  I grieve.  But, I will not allow cancer to come between us again, obstructing the connection we have.  I might lose my footing, suddenly finding myself on the other side of the cancer divide.  But I cannot let LFS score in this arena. Will. not.

So I will take the advice and the position of my local friends.  They have been courageous and revealing, pouring their love into me for years. I hope to be even half that sort of friend for my favorite mutants. My love and affection for them is boundless.

Tuesday, January 7, 2014

The Scan Monster

We have been enjoying some time together over the holidays. With the brutally cold weather, our holiday has been extended a bit.  This, in my opinion, is not a bad thing.

Yesterday was scan day, what I like to call "Big Scan Day" because it includes extra Li-Fraumeni bonus imaging.  In addition to checking for relapse cancer, we are looking for new cancer.  Awesome, because one boogeyman (well, in our case, two boogeymen) isn't quite enough.  It always makes for a very long day. Happily though, with school being called off for the weather yesterday, I could leave Olivia at home with Alex.  It is a much, much longer hospital day with a 5 year old in tow.

Lauren, Brent and I arrived at the hospital at 8:30...and began the imaging marathon with two ultrasounds.  We then headed over to MRI where Brent spent 3 hours in the tube. When he got out, I sent Lauren in to MRI and hoofed it over to CT with Brent.  He was pretty whipped, so when his chest CT was done, he went across the hospital to clinic by himself, rather than trudging back to MRI to pick up Lauren.  We are doing this all without a wheelchair and only one crutch, because he feels great.  But at this point in the day, we were all getting tired. Brent teases that even an hour in the hospital somehow requires a nap when we get home.  This day would end up being nearly 9 hours.

I waited for Lauren to finish her hour in the tube and then we met up with Brent in clinic to draw labs, have physical exams and begin the wait as results begin to trickle in.  The main apprehension for me, was the chest CT. Brent has a cough.  He actually has had one for some time, although with a runny nose, most thankfully.  At this juncture in the scan cycle, your mind begins to fill with thoughts, questions and doubts.  By the end of the day, you are positively drowning in them:  Have I been foolish to be reassured by the runny nose?  How could I be so stupid?  Clearly, this masked the oncological problem in his lungs...  Clearly.

Let's have small a musical interlude via Rihanna:
I'm friends with the monster that's under my bed
Get along with the voices inside of my head
You're trying to save me, stop holding your breath

And you think I'm crazy, yeah, you think I'm crazy

It is kind of like that on scan day.  I have found that this internal cacophony is something to just muscle your way through.  I try to recognize that it is crazy making, the thoughts going on in my head, but there is truth in what the Scan Monster says. It is really hard to defend against a truth, one that is grounded in experience. Cancer has been our companion, and could be again.

So, I try to talk louder than the monster.  But, there is the scan day megaphone, as well as the hospital triggers for me, as we tour the set of Nightmares Past throughout the day:  The bank of payphones that I called Dan from, to tell him that Lauren had adrenal cancer as a baby.  The fountain, where I would pass out pennies to the kids after each of Lauren's oncology check-ups, so they could make their wishes (I made a few of my own, believe me).  The radiology waiting room, vivid purple, where Dan and I spent agonizing hours, worrying that Brent's cancer extended beyond the giant tumor on his pelvis, and again, a couple months later as we waited, terrified, for Lauren's second cancer staging. These visual reminders only turn up monster volume.

Incidentally, I don't hear the other voices so much, my everyday internal dialog, on scan day:  We have been lucky in our cancer journey.  We are fortunate to have these fine health facilities in our backyard, such that we can keep up with the scans.  We have great doctors that are both careful and attentive.  Small cancer is better than big tumors.  Early is better than later...

Never is best of all.

Finally, this mental self-sparring was interrupted.  I met with our new oncologist.  We looked over the preliminary results and Lauren is deemed 'unremarkable.'  (We naturally teased Hollywood, very happy for this, but differentiating this radiological opinion, from that of the world at large)
However, for Brent there were a couple of things to look at.  We checked over the chest CT together, comparing it to October's scans, and I am reasonably comfortable with how things looked.  The three small 'somethings' in his lungs are stable and likely nothing.  They certainly have nothing to do with the cough, so  I can turn off that mental soundtrack at least.  We left with assurances that our new doc would call with the final results.

He called me around 8pm last night with additional CT conclusions, and a recommendation to do a follow-up ultrasound on Brent's thyroid to get a better look. A hoop to jump, but an easy one. The enlarged lymph nodes in his hip area will wait a month for the opinion of his orthopedic surgeon. That can wait.

It is quiet here today. The roaring winds of last night have been silenced, and the frozen disturbances in the forest behind our house have settled.  I woke to sunshine, even if it is still frigid cold.  It made me want to stay home, all the more.  So, I snuggled Olivia, reading countless books to her, made a special breakfast for the kids and enjoyed the calm of the added bonus of winter holiday.

It is pretty quiet in my head today as well.