Tuesday, February 25, 2014

We do what we must

In a zen moment, I said that we will do what we must.  Then, I waited to learn of the pathology, to see which way the road would veer.

They found a nest of melanoma cells in one of the sentinel lymph nodes.  So, a sharp left turn.

This will mean yet another, more extensive surgery, and a full year of treatment.  This will mean beginning the cancer clock over again.  This will mean dealing with the uncertainty and worry about whether the treatment is working.  This will mean less confident scan days.  Again.  

Somehow, I am not completely out of my mind.  It is curious to me, the relative peace that I have. If I am honest about it, I wonder if it is faith or fatigue. We have had relatively short periods of time between medical upheaval. It has been little more than a weekend furlough. So, it might just be fatigue. But, I have also been working on faith, which I struggle with.  Let's just call it even for now.  

At one point, overflowing with snark, I wondered if I was supposed to perfect my response to the statement "Your child has cancer." We have done this four times now.  Four.  I would like the score between them to remain tied, at 2-2, forever. They say of a tie, that it is like kissing your sister.  If so, Brent should pucker up.

While I have had something of a temper tantrum over this, my son seems to soldier on pretty well.  He is a teenager now.  He does not go into this with ignorance or inexperience, as he did when he was eleven.  Brent knows what chemo is.  He knows what surgery means. He can evaluate the merits of a port vs. a PIC line.  Where there is room for his preferences, he is making them known, and I am am working to accommodate them.

His greatest desire is to be in school with his friends, of course.  I am working out the logistics so that his treatment has the lowest impact on his attendance. But every cancer is different, as every patient is different, so it is nearly impossible to plan.  However, I have been working on various options. Having options is a good thing.

I have always encouraged independence in my children.  Alex works things out with his coaches and teachers.  From an early age, we have encouraged them to work things out with each other.  I seldom arbitrate. The older ones negotiate three ways, as they divide their household responsibilities, in a manner worthy of a future at the UN.

Our job as parents is to make ourselves irrelevant.  We are not unimportant, but our kids function quite well without us.

Brent turned 14 last fall.  He will begin to drive in a year.  He will be off to college before I know it.
As you send your child off to college, they need to know how to do laundry and balance a checkbook.  I also need to educate my children on how to manage, and be medically independent.  By necessity, Lauren and Brent have become adept at enduring their various scans solo.  They do not need my encouragement to get labs drawn, IV's run, or blood products administered.  Brent can navigate the maze of the hospital to half a dozen different departments completely on his own.

I am hoping that this is Brent's last bout of cancer before he graduates. (Hell, I am hoping that this is his last bout ever, if I could be so greedy)  I suppose that he should be more responsible for driving this time, with Dan and me in the passenger seat to help guide him, on his cancer learner's permit.  He needs to learn to answer (and to ask) more questions, with us just supervising.  He is a bright kid, and I know that he can do this, I simply wish that it weren't something he were required to do.

Our goal as his parents is to make ourselves irrelevant, in baby steps, in all things.

We do what we must.


Thursday, February 13, 2014

Life-Work Balance for a Stay at Home Mom.

I am ready for the weekend.

Work has been busy.  I am in charge of two divisions: medical and domestics.  In the past several weeks, I have fairly handed over the reigns of the domestic division to Dan.  He, I should point out, has a J-O-B of his own, with drawings, and meetings and deadlines.  But, he has been pulling double duty, saint that he is, as I have fairly abandoned my domestic responsibilities.  This is because the medical division is hopping, unfortunately.

I had a business trip to NYC.  Our meeting was fantastic.  Dr. Healey was smiling and satisfied, which is most reassuring.  We chatted about a few things, and as we finished up and parted ways, we were told that Brent's next follow up would be in a year. We have never gone such a length of time between appointments, which is a solid victory.  Brent was fairly skipping on our way out.

We went to a movie in celebration.  By the time we returned to Ronald McDonald House a few hours later, my phone rang. University Hospitals was calling.  They found melanoma in the sentinel node on the left side. Brent needs more extensive surgery. And treatment. For a year.

Go ahead and swear, because I certainly want to.

As we travelled back to Ohio, our Angel Flight pilot chatted with me a bit while Brent snoozed in the back of the plane.  He told me a story about how pretty early in his career, he was very driven, but was cautioned by an older friend about the value of punching out and making family a priority.  This friend spent Christmases with the pilot, rather than with his own family, because, as he confessed, the kids grew to hate him.  It made quite an impression on the pilot, who sold one of his businesses and cut back on his hours, with absolutely no regrets.

So, my job has been busy this week: travel, paperwork, correspondence, research, phone calls....  I may have mentioned that I have not been terribly engaged prior to this trip, and rather distracted.  Dan, ever my rock, has been planning a very important birthday party.  Olivia turns 6 tomorrow, my favorite Valentine's gift.

I woke up this morning, and thought about all of the things that I needed to do, which is a lot. Dan has put together plans to make Olivia's birthday a special one.  Considering the fact that I missed it entirely 2 years ago, and only arrived in the evening for it last year (both times at MSKCC) I should be right on board with him, a partner in making it special.  I have been very busy with work, no different in some ways, than the friend of the pilot.  Granted, I am not driven in my 'medical job' by the desire for material things, but from Olivia's tender perspective, does it matter?

So, this morning, I snuggled with Liv as I woke her up for the last time as a five year old, giggling and teasing.  We took our time getting ready and I drove her to school.  When the kids get off of the bus today, I am going to punch out for two days to celebrate the gift of family, and particularly the gift of my youngest.

And I am very grateful for my first Valentine, who drives the train when I disappear either physically or emotionally.  Dan means the world to me, and to our family.  He has always had a good life-work balance. I keep finding my way back, because of him.

Sunday, February 9, 2014

The Stages of Waiting

I haven't written in a while. 

Sometimes, that can be because I am off having so much fun.  For the record, that is not the case here. 

After finishing the big scans in January, and heaving a big sigh of relief, we followed up with dermatology on the kids.  They each had sketchy moles picked up on their initial screening back  in October.  We were just following up, and didn't have giant concerns.  There was a mole taken, just to be careful.  I got a call less than 48 hours later...Brent has malignant melanoma. (insert extensive swearing)

This is cancer number four in my kids.

There are stages of cancer, and stages of waiting. We do not yet know what stage Brent's cancer is, however,  I believe that I am in the final stage of waiting.

Waiting Stage One:  "We have to wait"

I got the call at the end of business day on a Friday, letting me know that Brent had melanoma and that he would need follow up.  The surgeons office would call on Monday.  I returned to the family room and informed Brent and Dan.

Brent, ever the trooper, responded with "Really? Another cancer?" with about as much complaint as if I had served meatloaf with too much frequency.  Then he returned to his book.  Really.

I looked at Dan, uneasy, but also knowing the drill.  There are steps to go through, and no point in getting ahead of ourselves.  As I like to say, this isn't our first rodeo.  We went about our weekend with a vague sense of waiting.

Waiting Stage Two:  "I can hurry this thing along"

On Monday, I was home, knowing full well that hospital gears grind at their own pace.  I wasn't going to get a call at 9am.  I was being patient and trying to go about my day.  But by noon-ish, I began sending emails and making phone calls.

In 'full on cancer treatment,' I make it my business to know the comings and goings of people important to my kids care, when their surgery days are, when they are in clinic.  I have joked about being a medical stalker. But really, it has been most helpful, knowing that the person whose opinion that I need will be leaving town for a conference...and when they will be back.

With melanoma, I was suddenly dealing with all new doctors and I felt like I hadn't gotten my homework done. Dermatology is closed on Mondays.  The surgeons office hadn't heard of me (there was an email snafoo between departments) and pediatric oncology does not have vast experience with melanoma, mostly because kids seldom get skin cancer.  I put many frustrating hours into getting some information about the pathology and the plan, finally concluding that answers were not to be had until Tuesday.

Waiting Stage Three: "I can get my answers another way"

This is is one of the most dangerous stages of the process.  Once you arrive at what you have predetermined is the finish line, if you do not have sufficient information, you will be out of your mind with worry and anxiety.

There is a slow methodical process in the hospital, this gathering of information.  There are deliberate steps, and medical folk are very reluctant to give you information about possibilities beyond the results that they have established.  I know this.  But I am wily, and resourceful.  I have mutant friends with much experience in all things cancer.  I could inquire more specifically, which I eventually did.

But, I also have google search, which beckons like the devil himself, tempting me to the dark side. This is a road paved in misery, headed straight to the depths of hell.  I know this, having exclaimed more than once to a friend at this stage "Step away from the web browser!"  But when you are that desperately hungry, you grab at whatever you see.  Google searching medical information is the forbidden fruit, you know, like the knowledge of good and evil.

So, like a crack addict, there I was furiously searching for information on my computer, trying to figure out what could be in store for us.  I might try to justify it by saying that I wanted to be prepared, or that I wanted to ask good questions of the doctors, but if we are being really honest about it (which I strive to be) I was impatient, and looking for a crystal ball, knowing full well that this whole proposition would be filed under "bad idea."  I stewed in abstract information, and numbers that I didn't like, but I also know, numbers that do not matter.

I will forever have compassion for Eve.

Waiting Stage Four "So long as we are 'Doing Something' "

After a week of finally sorting through the hospital communications as they debated about presenting Brent's case to tumor board (which I happen to know is on Thursdays), we got an appointment with a surgeon on the adult side, who specializes in Melanoma. (Tucking away this information, hoping never to need this again: his clinic days are on Monday)

There comes a point in waiting, where I just get stuck.  I could not write, and I can always write, incidentally. I struggled to focus on simple household management. I could not think past our meeting with the surgeon, 12 days after the initial biopsy, 10 days after the results, 7 days after expecting to talk with him, and 4 days after the aborted tumor board meeting.  We drove into the hospital on Monday, and discussed the surgery, which we found out, would be the very next day.

I understood that we would need to get wide margins and test nodes for this cancer.  My understanding has become more refined, because 'wide margins' involves much more tissue than I had previously thought.  "Testing the nodes" involves surgically removing some, either from his groin or armpits.  Not the worst surgery that he would have, not by a long shot, but not small either.

But after sitting achingly still for so long, you welcome the opportunity to do something, anything, however painful.

Waiting Stage Five:  "Acceptance"

Brent had surgery, thankfully needing to remove lymph nodes from both armpits, rather than complicating matters in his hip by the requirement of removing nodes there.  He is still on crutches, so he missed more school so as not to aggravate the incisions under his arms.

I have said that I struggle with faith.  I am not sure if it is faith or fatigue, but as I sit here in NYC where Brent and I have travelled for a follow up with his orthopedic surgeon from cancer number one,  I am not anxious. Tomorrow we will learn what is in store for Brent orthopedically.  We are also hoping to learn the pathology results of last week's surgery, although that information may not come until later in the week.  This will determine if we are medically quiet, or medically busy.

I am still, but not achingly so.  We will do what we must.

This is acceptance.