Today’s featured image is a picture of Boomer and me at my mom and dad’s during my first round of treatment in 2017.
It’s not quite 60 °F here, and there’s a gentle rain falling this morning. We avoided major storms last night, and considering how we fared during the storm seasons of 2019 and 2020, I’m very grateful. Although I know we’re just getting started this year…
Dan and I are in the middle of getting quotes to have our shutters and a little bit of trim work painted on the exterior of the house. We moved here in 2015 and have always needed to do the paint, but you know (or maybe you’ve just heard) how it goes with cancer in this country. We think medical bankruptcy is not just acceptable but ideal.
While Dan and I aren’t going to be moving any time too soon, we are 1.) prioritizing projects with resale of this house in mind, and 2.) being realistic about how long it will take us to get it ready — especially with treatment looming in the not too distant future. With treatments like chemo, you don’t know exactly what to expect. Sometimes the world just stops while we wait out the side effects.
It doesn’t bring me any pleasure to say this, but I made another GoFundMe last night. I just guesstimated what this round will cost and what further disability might look like for me as time goes on. I am on Medicare now because of disability and I anticipate chemo will put me squarely (roundly?) in the middle of the donut hole this year.
Of course, I know raising $100k from my friends and family is not likely. This is not my first medical fundraiser, and there’s a pandemic and all. But maybe people who look at the campaign will think of these costs next time they vote for someone who runs on maintaining the status quo — where people don’t deserve things like affordable cancer treatment. Maybe someone will look at that giant, scary number and think, “What if it was me?” Because it totally could be.
I was diagnosed at 36.
Anyway. On today’s agenda, I plan to do a load of laundry and then swatch some new colored pencils. My lovely Zentangle friend, Linda, gifted me an online art class that happens later this month. I used part of my Patreon funds for May and a couple of gift cards to get my first set of Prismacolor pencils. I might also hunt down another YouTube tutorial from TangledYogi333. She almost always colors her Zentangles with Prismacolors and I think it would be a nice exercise to get warmed up with.
I still haven’t done much planning for a new YouTube video on my channel, but I’m getting there. I need to organize my studio space first, which at this point will be a bit of an undertaking. I also have some ideas for Thank You card designs swirling in my head. I have a couple of those on my to-do list as well.
Yes, we understand all too well so many of the physical, emotional, and financial challenges. I’ve noticed that a devastating diagnosis can change people’s attitudes about universal healthcare PDQ.
I was soooo fortunate to work for a good private non profit when I was diagnosed with breast cancer. I had a stop limit amount for the year and copays, which ended up costing about $6000. When the bigger bills came in, it was a little scary, but I was on some pretty good meds that kept my emotions in check. I can’t imagine how you feel without any safety net at all! I had 4 months of chemo, 36 rounds of radiation and some reconstruction. It was a year in total from diagnosis, installation of a port, treatments, and removal of the port, and I had reconstruction about 4 years later (two surgeries). I have to say, my life was unrecognizable during that time. I am sorry you have to go through this. I will try to keep an eye on you and help if I can.
Thank you so much, Victoria. So much of treatment depends on what we can afford or what the insurance companies are willing to cover. I completely skipped things like PT/OT after my brain surgery because I literally didn’t have the co-pays for the visits–even though I was still had employer coverage at the time. My dream is that everyone gets what they need without having to stress about the money. I am so glad that (for at least part of your treatment) the bills didn’t have to be your first concern. In my mind, that’s the whole point of insurance. Wishing you all the best.
Horrible that we’ve been expected to be bankrupt in order to qualify for social security disability while waiting two years from that to get on Medicare. I lucked out if you want to call it that when I got fed up of being told I was overqualified (read too old and expensive) for jobs in the tech sector I was completely right for, yet no one wants to pay women what they’re worth. So I decided to change careers and fulfill my passion and design jewelry and work with the best jeweler in town. Yet I needed a tax ID because I would be apprenticing and selling the jewelry as well as a salary and all in it would’ve been lucrative. I got my tax Id and a little pop up screen came up after I was done offering me covered California insurance for 250 a month. Of course I needed it and sure enough signed up and was fully covered. My new job start date was 3/25/15 the exact day I was rushed to the hospital and diagnosed with stage 4 metastatic breast cancer and lo and behold couldn’t come to work that day or ever. We were all so damned upset especially me – and my wedding ring designed by the owner as well as my 50th birthday gift of diamond earrings were stolen when I was cleaning them in our new house by someone we trusted. Now I’m on Medicare with part D supplemental insurance by blue shield. But the fun first three months of patient responsibility is 45,000 easy enough to get to when your chemo is 16k a month (just the chemo not the 1000 in other drugs) so for that I use the patient advocacy network which so happens runs out just as the catastrophic coverage kicks in through my part d. 5% of 16k is still 800 dollars and ssdi is max for me or 2440 a month. That’s actually 1/3 of what i am supposed to live on in Northern California good luck with that. So I reached Novartis the manufacturer and they are covering my copay and the meds come directly from them. It’s my second day today and my stomach is killing me and the fatigue has already begun. It’s only 7:50 but I’m exhausted and going to bed- you might try PAN for your type of cancer.
Oh and we are just out of range of a huge wildfire evacuation zone so I may arise tomorrow to find out I have to leave our house along with Simon and skip my first airplane trip to see a friend in Knoxville- so far not feeling so good. Time for a compazine, a diazepam and some bedrest. Let me know if I can point you in any funding directions in seven years I’ve gotten quite good at it.
Oh, Ilene. I’m so sorry! I hope you know you’re always in my thoughts. I hope the wildfires at least maintain their distance. Things are so horribly complicated all by themselves but when cancer enters the mix, everything is absolutely devastating. It’s an absolute nightmare that we have tied our insurance to employment in this country and then made it even more complicated by making it so hard to get SSDI, which is never enough to help us get by. Thanks for your offer of help finding funding. I’m in the early stages of finding a way to make this work, but if I run out options you can count on me hitting you up for advice. <3