It’s been a while. I’ve thought of writing, tried writing, and frankly, there was just a period of time in there where I just didn’t have nice/positive things to say. As you know, I don’t mind sharing some good, some bad and even here and there – some ugly – as I truly do believe it can be weaved in when contextual, but no use just being a downer – that’s gross! But when I did have the energy or anything more uplifting to share than “man, I’ve got a very unattractive infection puffy and painful under my new foobs” I used it on the kids, planning for summer or reading about my particular breast cancer and my particular treatments (also being ridiculously frustrated with a few folks at Henry’s school – but let’s save that for another day, shall we?).
Bottom line – I’m not so good at this cancer business. I see videos of cancer patients out running, sometimes with smiles on their faces, and frankly, I’m just going to own that I’m thinking evil thoughts about them. I’m also not embracing the bald thing – I know I’ll get there, but not yet.
My surgery recovery actually surprised me in a good way – while everyone is different, the bilateral mastectomy was easier than C-section was for me. I was out walking, had decent mobility with my arms over my head in short order, and was up and living life except for heavy lifting. However, a few weeks later, my world started to crumble a bit – infection and fatigue did me in. Not to mention all the Prince news which for some reason freaked me out enough (and with enough sleep deprivation, this seemed logical to me) I stopped taking my pain pills and muscle relaxers that had been prescribed to me following surgery.
Top all that fun off with Tom’s broken leg, trying to arrange a myriad of meetings with the various schools and programs we work with planning for summer and next school year programing for the trio, writing plans with our social worker for the kids, getting the kids to their various activities and trying to take part in whatever events we could while we could. Guess what – I imploded.
One of the hardest parts of this cancer journey for me is that I am having a really hard time accepting my own limitations due to cancer. I keep chugging along until I don’t, and then things get messy. In this case, it was at my Grandma’s 95th birthday party, and I had a giant mental breakdown in epic fashion (ok, after the party at the hotel, but still). It was unbecoming, it was ugly, it was sad. My kids were concerned about me and rightfully so – they get it now.
That Monday, I arrived at my amazing Plastic Surgeon’s office, and owned every ounce of what had happened. He looked at me and said “are you taking your medications?” and my reply was something like “no, because I don’t want to die like Prince” which seemed so perfectly logical at the time. Huh. Interestingly, just a few hours later, I was called due to a last-minute next-day 2-hour-cancellation with the rock star Oncology Psychiatrist they had suggested I chat with about ongoing medication needs through this journey – though she’s typically so booked up I wasn’t originally scheduled to see her for a few more months. Amazing coincidence, right? That said, she had a nice chat with me about addiction vs. dependence and how during my journey my medications are going to be vital to getting through all of this in one piece. I liked her, and she also reminded me that my meds are not the same as Prince’s were anyway. Ok then.
Chemo started, and I tried to make peace with the red devil. I’m trying hard not to view these chemo drugs as an enemy but as a tool to taking out any remaining bad guys lurking around in my body. Monday was my 3rd of 4 treatments with the Red Devil (aka AC chemo), and then I will begin 12 weekly treatments of Taxol, which I’m told is often easier on the body than AC.
Truly, my side effects while unpleasant are hardly the same as many bad made for tv movies I’ve seen from the 80’s or 90’s. It’s kind of cool how they manage side effects and counteract white blood cell count issues (I wear a small device that gives me a shot of neulasta about 27 hours after chemo ends – can’t even feel it, but it strongly suggests that my bones kick white cell production in gear, and it works!).
I’m fatigued, the neulasta does cause some bone pain, my taste buds are weird and I caught an awful cold that got kind of serious in a hurry after my 2nd treatment. It left me bedridden and isolated from everyone for nearly a week, and I’m still not over it. I’m careful to not be in groups in enclosed settings these days, and have to miss more events and family functions than I’d like, but after being so lonely, it was kind of awesome hanging outdoors at the El Loro patio last week for a short time with some pals. I mostly just cried about being bald, and yelled a few bad words out loud about this crazy journey, but they were cool with it. People really are amazing when life gets ugly, aren’t they?
Speaking of – for anyone out there who is so inclined to offer help, support, labor or even some mild heckling – we need you this weekend!
Our amazing extended family has gifted us a gas fire pit. It was especially kind as the kids were so sad we had to cancel our epic road trip to national parks of the west this summer. No doubt – it will be rescheduled at some point, but this summer, we’re home bound more than usual. The fire pit will be a way for us to welcome friends and family, and this weekend, we’re hoping to enlist some help in creating a 16 foot diameter circular paver patio in our backyard to put the fire pit on.
The plans are created, the supplies from Lowe’s are at the end of our driveway, we have step by step instructions and we’ve rented a serious electric tamper tool to help out with this crazy fun. That said, Saturday will be our big project day – it’s supposed to be a warm one, so we’re hoping to get started early (note that when I say we, Tom aka “Hop-a-Long” can’t lift anything at all after he violated his original no lifting rules and then had to have surgery to implant a steel rod in his leg a couple of weeks ago). That said, his talents are many, and there are plenty of ways Tom, our trio of enthusiastic random acts of kindness bestowers, and my somewhat inappropriate heckling and hope to provide an excellent spread to anyone who helps us in any way will encourage some volunteers.
If you are game, here is our wish list: use of any shovels and/or wheelbarrows. Volunteers willing to use a wheelbarrow or a shovel to carry supplies to our back yard and dig down 6 inches in our crazy clay soil to create a 16 foot circle shape. Dump gravel and then sand in the circle, and then lay the paver stones. If you have an hour at some point on Saturday – we’ll take you! If you’d rather just leave your wheelbarrow at the end of the driveway with your name on it so we can return it and run away as fast as you can – do it!
While a bit unconventional, this is something that would mean the world to us. We’ve been a bit isolated of late, and this will be a way to include our friends and family in our lives more easily, and give us a spot to welcome folks and create some very creative smore’s.
We’ll get started at 8 a.m. for any early birds and because it looks like it may be a warm one on Saturday. If you think you can help out in any way (supplies or strength), just email me or my pal Heather who has foolishly agreed to help coordinate this craziness in hopes of achieving completion in one day. Also – we want to ensure we have enough snacks (note the possibility of a unique signature cocktail!) firstname.lastname@example.org or email@example.com
Last, while it’s been a challenging time for our family as a whole, our kids are stepping up in new ways, and it’s kind of awesome. We are overwhelmed by the kindness of the amazing people in our lives that have shown us compassion, good deeds, thoughtful notes and gifts – and helped us tremendously during the most difficult of days. My humor is not as sharp, and I cry a lot more these days, but it’s an overwhelming experience in so many ways, I find it hard to process most of the time. Plus I’m just kind of funky anyway.
Enjoying the friends and family in our lives is one of our core values (even when E asks how long you’ll stay and directs where you park), and that’s why we are so grateful to be able to create this backyard space on Saturday. Should you be able to help – thank you. If you’d rather not but can send good vibes our way – that’s ok too. No doubt, we’ll be looking for ways to pay it forward as soon as we’re able! Love ya, man!