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.


  1. Words really do fail sometimes. Yet again, you put words to something I struggle to define...the waiting game. It always feels as though everyone else should be addressing something with the urgency I feel, but it is not how these things work, and while I accept that reality, it somehow never makes the waiting any easier or understandable. My thoughts and prayers are with you all.

  2. So sorry to hear this news...I understand the stages of waiting as my daughter was treated for cancer at age 15. Waiting= A misery like no other. Hope the news is good as far as treatment/not treatment. No words can help, but will keep your family in our prayers! I do have to recommend half a Xanax for times like these, helps to take some edge off the anxiety and get you through to the next step. No reason to suffer with anxiety more than necessary in situations like these. One day at a time, sometimes one hour at a time...