So five years ago I started this blog. I was newly diagnosed with breast cancer, was homeschooling, had a new baby with Down Syndrome, and my family and friends wanted to keep up with every little update but were afraid to call or come over lest they interrupt precious sleep, or in case I was too tired and cranky to talk. Blogging gave me a way to keep everybody informed (when I was awake and usually not cranky), a place to share this journey, and a way to save and store all these memories for my children. The absolute most valuable part about blogging has been the friends I have made. I continue to be surrounded by a community of women who are truly present for me, 100 %.
All those gifts from blogging have remained true, but as I have tried to balance illness and family and everything, keeponspinning has sunk to the bottom of each days list, with lots of guilt although plenty of good intentions. Bt it’s time to get back at it. I had surgery the other day, and here is the path report.
It all started a few weeks ago when my lymphedema flared up. My left arm was so swollen I truly was worried the skin would pop. So I called the surgeon, who speakerphoned from the operating room and told me to go see the oncologist. The oncologist sent me to the hospital, where they found a blood clot in my chest. One of my biggest fears, truly. So to make a long story short, I am now on blood thinners.
I will spare you the photos of the bruises on my abdomen. You can tell precisely how many days I have been on these shots, and in which order i used each place, as the purple circles get larger as my blood gets thinner. So why did I get this clot? Well, there was also this new mass under my left arm, that the oncologist initially wasn’t worried about… but when they looked at it in the hospital, the story there changed. They considered taking it out really fast before starting the blood thinners, but the skin was stretched so tight that they truly worried that they wouldn’t be able to sew it closed again.
Meanwhile we tried to get the swelling under control. I am wrapped from fingertips to armpit, changed twice a day. This makes it hard to do absolutely everything. Like knit. Or type. Or get a sweet little almost-totally-dry-all-day boy onto and off of the potty. Totally impossible to spin, despite this gorgeous bag of fleece we discovered while cleaning the laundry room the other day. It sits in the kitchen haunting me. I think i need to just put it on ebay, but I’m too emotional right now, so I just open it up every once in a while to get my lanolin olfactory fix.
So we waited until the clot was stable, then paused the blood thinners and went in on Thursday and carefully took some chunks out of the mass. 7 pieces, up to about 2 cm each. And you saw the result. Did you know that chemotherapy can GIVE you cancer? We were hoping that maybe this tumor was a new kind of cancer, thus more treatable than an old cancer that has kept growing despite pretty much every single most toxic treatment anybody could think of for five years.
Yesterday Dixon and I went to sit down with the oncologist. We don’t have a plan yet, because we need a little bit more data first. They are still waiting for one more test on the tumor cells that might tell us that a new drug might keep it from growing for a little while. And they accessed my port, drew gallons of blood for labs, and then arranged for me to spend today getting a radionuclide bone scan, brain MRI with gadolinium, and CT scans with contrast of chest, abdomen, pelvis… I had had several scans recently, but this tumor seems to be growing really fast, so they wanted fresh data. Of course in the radiology department these signs are everywhere:
I would have given anything to be pregnant or breastfeeding rather than in my situation. Sigh.
And in every department i had to fill out forms. Writing out the words that I knew meant my cancer was back in a way worse form than ever before made it seem so much more real.
And of course to top it off, both the clothes washer and the dishwasher broke within 12 hours. And right between disaster one and disaster two we took George to the ENT. He needs ear surgery number ELEVEN. Considering that we don’t know what’s going to be going on with our family over the next little bit, and he needs to be able to hear, the ENT rearranged some other kids and put him into the OR schedule for Friday. Like tomorrow.
So I bought paper plates, and friends are doing my laundry. Oh, and here’s the other thing i bought. One impediment to blogging is that it’s really hard to manage my good camera with my bad arm. And I am just not smart enough to get photos from my phone to the internet. So now I have a light tiny camera to go.
So that’s the story. My favorite chemo nurse at the oncology infusion center told me yesterday that I shouldn’t waste my time or money buying lottery tickets today. We still don’t have a plan. Maybe Monday or Tuesday. Meanwhile, we’ve been crying a lot, talking to friends in the middle of the night when the pain pills arent working, and praying ceaselessly. And trying to get a few things done, as much for the distraction as anything.
Oh! Here’s something that’s been a good distraction for me. You all know that as a pro-life person, I’ve discovered that contributing a little bit to saving lives of disabled children in orphanages in Eastern Europe brings me joy… we can’t adopt, obviously, but we can financially help families who can. And one of my friends anonymously donated a brand new ipad for a fundraiser to save LOTS of children. There are other great prizes too, a camera and an ipad mini and gift cards. But the BIGGEST prize is saving lives. So I sit here on the sofa and click refresh every little bit, and rejoice when the numbers are higher… go check it out. I know it sounds sort of complicated, how to enter, but keep scrolling down and you’ll see how it works.
Poor Dixon, he knows that supporting these families makes me happy, so he’s not about to complain about the sorry state of our paypal account at the moment. He would do anything to make me forget about the cancer, even for just a little while.
So anyway, I’m back to blogging. Regular (although shorter) updates I promise.