When The Care Giver Needs Care...
Shoot! I thought I was going to go through some serious surgery and chemotherapy. I swore I had lung cancer. Well, breast cancer that had metastasized into the lungs. Turns out it was only breast cancer. That was such a relief. My doctor in Chicago thought it was just Ductile Carcinoma In Situ – the Stage 0 one or something like that. We showed the scans to a friend in Australia and he knew there something more. He saw the invasive tumor which the people here only saw after my entire breast tissue and skin had been biopsied. Thank God I already decided I wanted them all gone, both of them, didn’t want the risk of a recurrence in the other breast. That was the easiest decision of all – bilateral mastectomy or bust!
The diagnosis came in November of 2014. Surgery was eventually scheduled for February 2015. The kid with type 1 diabetes, Kyra, was in 5th grade at the time. She had always been pretty independent with her care. By that point, she knew how to change her own infusion sites but always with supervision from me. She had only done it twice by herself – she still wasn't confident and needed me to do it for her. Well, her dad was there to help too but she knew more about site changes than he did. How were we going to prepare for the few days I’d be in hospital and the days I would need recuperating in terms of her diabetes care?
One solution was to get an Omnipod system. She had been wanting to try the pods, thinking they’d be easier while she did gymnastics. So we met up with a rep and he showed us how to use it. Both my husband and my daughter thought it was much easier to change the pods than the Medtronic infusion sets. So we managed to finagle getting the Omnipod system and three months worth of pods and test strips without having to pay too much out-of-pocket. (Ask me if she ever used the pods after those first few months...that's another story...)
But my biggest concern was the time I’d actually be in the hospital and the few days after surgery. What if she needed help with changing her site at school? Here’s where the amazing DOC (Diabetes Online Community) came in. We had a local Facebook group of parents of kids with Type 1 diabetes. Some of us met once a month for breakfast and the families met several times a year for dinner. All I did was tell them our situation and if anybody close to the school would volunteer to be in her emergency contact list for any T1D related issues. Four moms quickly stepped up. I “introduced” them to my daughter and told her that, even if she didn’t know them personally, if anything happened at school where she needed help, one of them will surely come to help her. Since she was in a private school, all I did was inform the staff, gave them the contact details, and we were good to go.
In terms of dosing for meals and doing corrections or treating lows – those were non-issues for us at that time. She was already better than I was at SWAGging (Scientific Wild Ass [or Amazing] Guess) her meals, she could feel her lows, she knew how to do temp basals on her pump, and she knew how to “rage bolus” for high blood sugars.
Recovering from a bilateral mastectomy doesn’t take long. I mean, yeah, you feel like someone bound your chest tightly with thick wires and your armpits feel like someone stuffed them with gold balls or rolled up towel, oh, and don’t forget the four tubes hanging from what should have been under your breasts if you still had them… but I was up changing into my pajamas as soon as they rolled me into my room. I went home the day after surgery and changed her pump site the next day.
Things would have been completely different if I decided to only do a single mastectomy – that would have meant more than a month of radiation treatments, every single day and possibly chemotherapy; or if I decided to do reconstruction. I just needed to do what needed the least amount of recovery time so I could quickly go back to what I had to do.
Here I am almost two years since diagnosis, cancer in remission (you’re never really “cured”), and the kid still has Type 1 Diabetes, except now she changes her site more often than I do for her.