Yep, cancer stills sucks.

After watching my little girl live with this for over 2 months now, it’s more correctly, chemo sucks, the cure seems worse than the illness and all that … It’s astounding what the body can put up with and it’s astounding what chemo does to a body. But being alive and seeing rainbows or going to Target to run errands kinda trumps not being able to do these things at all … Sweetie, even if you’re complaining about how going on errands to Target is the MOST BORING thing in the world and why can’t we listen to the Taylor Swift CD for the 8,042nd time … I am really truly am looking forward to hearing decades more of those complaints!  I really am.

And as a parent it also astounds me (not to overuse that word, but it does), how strong that emotional bond to your child is. I helped make that little girl. I first saw her first come into this world and ironically, the first thing I saw, the top of her head, looks pretty much the same now as it did 11 years ago because of chemo.  This parent thing really pulls at you at unexpected times with things she says, or her sister says, or that doctors say about her, or just thinking the “what if’s” in the middle of the night. The whole cliche of parents staying up all night worrying about their children, well I’m living it now …

Ongoing List of Things I’ve Learned (in no particular order):

• You never realized how scary a cold can be until you have someone on chemo in the house.  As the oncologist explained, chemo drugs attack fast growing cells, like cancer cells, but also hair cells, and white blood cells.  I had never thought about it, but that makes sense and also make you realize that while there are all these advances in cancer treatment, to use a Call of Duty analogy, chemo is more of a shotgun than sniper rifle. Chemo basically makes you in to a AIDS patient since it so reduces your white and red blood cells and ability to fight infections and colds, flu, etc.  Granted, unlike an AIDS patient, you usually bounce back from this within a week or two and your body makes up for those lost white blood cells.  I’m Purell-ing and Handy-Wiping and just plain washing my hands all the time now, but what also scares me is that I was Purell-ing like a crazy-man at the hospital, but still caught a cold. Hoping this is not some super-Purell-resistant strain …

• PET scans can only pick up cancerous masses if they’re a couple of centimeters across, whereas CAT scans and MRI can find masses mere millimeters across, but not necessarily tell if they’re cancerous (this is interpretation of what the oncologist told me and is not meant to be offered as graduate-level medical advice).

• Pediatric Oncology is the purview of female doctors. Granted my survey sample is small, but we’ve yet to see a dude. And as an aside here …. I really like that my girls are growing up in an era and and country where many of the professionals they deal with: doctors; nurses; airline pilots; librarians (except their dad) … are girls, that’s their normal. Go grrls go! Part of why this struck me was sitting in the hospital last week and watching the interaction of the family sharing our room. They were Arabic, the mother wearing full head-scarf and gown, not quite a full burkha, but almost, so given the ensuing excitement, I thought this rather interesting.   Anywho, this Dad was incessantly arguing with the doctors (all female) and it may have partly been a case of language in terms of him trying to understand the regimen and what was all going on, but after the doctor referenced discussing something with his wife while he was out and him dismissing her decision, the feminist in me surged 😉

• Surgeons and specialists don’t like to touch you. We’d noticed this with some of the oncologists when meeting them, even though the cancer in question is a visibly obvious tumor the size of Delaware.  And this interesting bed-side manner confirmed what me and my wife had discovered when we’d both had minor surgery in the past couple of years. Since our surgeries were successful, we both assumed the surgeons did in fact touch us when we were unconscious. But even in post-op exams for us, again no touching … Really? Shouldn’t you kinda make sure your work paid off and nothing is going to pop out unexpectedly alå Alien? On the other hand our GPs, Pediatricians, and nurses, as one would hope, are pressing and prodding away ’till the cows come home. Anyway, thought it an interesting little insights into the medical profession.

As a note to readers and myself … I’m kinda writing this for myself as a form of therapy I suppose, and also I hope that 30 years from now as I’m sitting with my older daughter (orbiting the earth in her space-station condo), she and I can read this together, not that anyone wants to relive this, but to get an idea of what dad was thinking as this all was going on and maybe give her some insight into raising my grandchildren.

And I don’t even have it …  I already kinda knew that cancer sucks, my mother has had two bouts with it and know of a few folks  who have it too, but now my oldest daughter has it … and after almost a month of doctor appointments, endless testing and scans, and her first round of chemo it still hits me “wow, this is real, this is now my life.”

So, what I’ve learned in the past couple weeks …

• Both my daughters are amazing little human beings.  Both have there own way of coping with this.  It’s an awful thing to try to make sense of.  My oldest has a way of reacting, compartmentalizing, and then being her normal cheery self.
• There are astoundingly amazing, kind, generous people out there.
• The accommodations that the staff at Children’s Hospital make to ensure the comfort and ease of their patients is impressive and comforting.
• Nurses are amazing.
• Amy & I work as a pretty good team, we’ve been hit with a ton of shocking news and information and are just dealing with it without any histrionics or going comatose and limp  …although making dinner is a struggle, but it was before this too 😉
• Researching a disease and having knowledge going in is a huge asset when talking with doctors and your oncology team.  My mother’s fight with inflammatory breast cancer gave me a lot of knowledge and the lingo that really helped me understand what the oncologists where talking about and gave us the name of a drug that should really help my daughter daughter with side-effects.
• The Turkey BLT sandwich at the Au Bon Pain at Children’s Hospital is delightful.
• Invest in Purell, they have the hand-santizing market cornered in hospitals.
• The free wifi at the Children’s Hospital is astoundingly easy to access for both smart-phones and laptops …and has amazing bandwidth, Netflix, YouTube, no problem.  So we don’t have to rely on the hospital TV and can stream iCarly as needed.
• Commuting back and forth into Boston on a daily basis, not delightful … really didn’t need to confirm this, was pretty sure about this already.

But It’s all totally weird that I know these things now and I really really wish I didn’t have to know any of this and the list of knowledge is growing (wanna know about hospital parking decks in the Longwood area?)  … Now I’m one of those parents with a child with cancer and that just so totally sucks … but, it’s my new reality.