April 22, 2011

Hi again friends,

So we’ve heard from the plastic surgeon and good news: we have an appointment scheduled. Less good news: it’s not until Tuesday at 9 AM (it’s Friday today) and it’s only a surgical consultation. I guess I should have known those come before the actual surgery, but I am so anxious to get to the next step that I wasn’t thinking realistically.

Peter and I have been enjoying our day together, mostly doing nothing and reading up on cancer, melanoma, and pregnancy, in various combinations. If anyone is curious, there is a website called Hope for Two that is targeted towards women diagnosed with cancer during pregnancy, and they are working on connecting me with another woman who had a similar diagnosis. They also sent me some nice resources I can forward on to anyone interested.

The good news is that the more I read, the more optimistic I feel (which usually is not the case when consulting Dr. Google). Of course, we can’t know actual outcomes until we know for sure how far it has spread and how deep it actually goes, but based on what it looked like to the naked eye, it looks like we will probably be OK.

Lots of love to you all!

I remember how new I was to the medical system. I got an appointment with the plastic surgeon the day after I got my diagnosis, but the plastic surgery scheduler who called me didn’t even tell me what the appointment was for until I asked if there would be any restrictions on eating or what I should wear. That was when she realized I thought I would go in for SURGERY the next day. I just wanted to cut everything OUT as quickly as possible. She explained that no, this appointment was just to talk about the upcoming surgery, and that would be scheduled after I met with the doctor.

Hurry up and wait.

I think I also wanted to DO something about this. Just knowing that I had cancer was awful enough. I wanted a plan to “deal” with it, whatever that meant. Action was a thousand times better than inaction. I needed to know what the next steps were to prevent me from feeling like I was peering into a void of nothingness. Without a concrete plan of action (Surgery: scheduled for Tuesday, etc.), the future no longer existed for me. This was terrifying.

My entire life–work, pregnancy, home life–was obliterated with a single phone call and nothing was predictable any longer. Even people who delight in living unpredictable lives of vagary have at least some CONTROL over that. It can be a choice. Being utterly at the whim of a huge medical system you don’t understand yet (yet clearly has a set course), and even more, at the whim of an obviously capricious universe is extremely unsettling and stressful, to say the least.

This was also my first experience (of many) where the medical professionals were so familiar with the process that they forgot that their 5th surgery scheduling of the day was the very first one in this patient’s lifetime. I don’t blame them at all, but it was a good reminder to me to not make assumptions about patients’ experience and knowledge in my work in a medical facility.

If you are a patient, always ASK QUESTIONS. Even if you think you “should” know the answer. Even if someone has already given you an answer (you might get a different one from the doctor than his/her scheduler).

Overall, though, what comes through the most for me from this email is the combination of putting on a brave front and naivete I had about EVERYTHING (only natural, given how early it was in the process for me).

I remember waiting until I really did feel optimistic to even write this. I didn’t want to scare my friends and family with the fears that are only natural with a diagnosis and an unknown prognosis. My dark thoughts of widowing my husband and leaving him to care for a motherless newborn weren’t things I wanted out in the open. I also felt like committing those shadowy thoughts to words would somehow make them real. Giving them life through language would bring them into being.

My superstitions prevented me from ever really verbalizing much of what was going through my mind, right up until I had my scans after Emmie was born and nothing else was found.

People have told me how brave I was, but really, I just never wanted to show scared I really felt.