Still Finding Good in the Every Day: The Payne of Living
with Stage IV Breast Cancer
Diagnosed at age 50 with Stage IV breast cancer (mets to lungs). Treatment plan included chemo and mastectomy.
Currently on maintenance of Perjeta/Herceptin infusions once every 3 weeks,
along with Tamoxifen (an oral med taken once per day).
I'll never be able to dance with NED, but there is currently No Evidence of Active Disease.
The cancer will always be there, not necessarily active.
This blog covers the day to day living with a terminal illness.
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On Obtaining a Wheelchair
You might remember about a month ago I mentioned on the facebook page about the possibility of obtaining a wheelchair. I got the order from my doctor and took it to a place not so far away. Good news. A place only about thirty minutes away that sells what I need and takes my insurance. They said it should take approximately two weeks. Nice. Nope. The people working that day were very nice, don't get me wrong. I've spoken to one of them on the phone about once a week since then. You see, the owner has his own health issues, and, long story short, the order for my wheelchair is still on his desk. So, this morning I started calling around again. Sooooo frustrating. I really wish the lists that the insurance companies provide would be narrowed down a bit. I searched for durable medical equipment within twenty miles. Twenty four places came up. I called all but four of them. Only two sell wheelchairs. They sell cpap machines, or orthopedic supplies, or provide hospital beds, or something else besides wheelchairs. It's so very frustrating to have a health problem and have things related to it be so time consuming and so much tedious work. (Don't get me started on keeping the bills and the appointments straight!) Anyway, I called places on the list according to how far away they are. Today was Woodbridge. Twenty miles? Maybe as the crow flies. Anyway, the guy I spoke with was fabulous. The rep that covers the DC area actually lives in my town. So, I don't have to go to Woodbridge! He'll come here to take measurements to fit me for the chair, and he'll deliver it when it comes in. How cool is that?! I emailed the order over. Next step is them sending paperwork to my doctor. Once they have that, they'll send it all over to the insurance company where it will go under review. The review board at the insurance company will decide if it's medically necessary. All in all, I will hopefully have it in about a month (cross your fingers) and can get out of the house more. So many places I don't go because I just don't have the energy to walk as much as it would require. Just simple things like shopping. Walking Benji around the neighborhood. The County Fair
in September (at the last event I attended at the fairgrounds, Jimmy
had to ask for the golf cart to take me to the van, because my legs just
would not go any farther). Day trips with the boys. The grocery store! Cross your fingers, everyone, and hope that the insurance company will approve it. I'll keep you updated.
I was diagnosed at the age of 50 with Stage IV breast cancer. Stage IV is the same as metastatic, is the same as terminal. My breast cancer had spread to my left lung. I underwent seven rounds of chemotherapy, followed by a mastectomy. Since then, I have been on maintenance treatments -- two medicines via IV once every three weeks, one oral medication daily. I have routine CT scans, bone scans, echocardiograms, and MRIs to keep an eye on things. I deal with side effects of these maintenance medications. I have balance issues, and extreme fatigue, so I use a cane, a walker, or a wheelchair, depending on where I'm going and how pronounced the side effects are at the time. So you see, the cancer is never out of my mind. It's always there, looming. I've come to cherish every minute, to find the joy in all things, to live.
Monetary Cost Cancer is expensive. I have
good health insurance. Really good health insurance. Even with very
good health insurance, though, cancer is expensive. Every time I visit my
primary care doctor, which is about every four months, I have a $10
copay. No big deal. Every time I visit my oncologist, which is
every six weeks (down from every three weeks while I was undergoing chemo), I
have a $15 copay. Every time I have treatment (Herceptin and Perjeta
infusions), which is every three weeks, I have a $30 copay. In addition
to these routine things, I see my cardiologist, my surgeon, my gynecologist, my
ophthalmologist, and my oncology rehab specialist periodically. That's
$15 each visit for each specialist. On top of these copays, there are other
medical costs. Luckily, for my Tamoxifen prescription, I am able to
receive a 90 day supply, which is no cost to me. My other prescriptions,
however, are between $10-$20 each month. Then there are the physical
I'd been thinking about it for awhile. In a few knitting facebook groups, people periodically post photos of their stashes (of yarn). Most of the comments on these photos are those of us with smaller stashes being envious. To have all of that yarn at your disposal, whenever a whim strikes -- wow. Sometimes it spurs a discussion -- to have a stash vs. buying for a specific project and actually using the yarn before buying more. I've always gone back and forth on this. Sometimes I would love a roomful of yarn. Sometimes I think, no matter how long I live, I would never use that much.
With my Stage IV cancer diagnosis, I realize that I am not my lifetime going to use up all of the yarn I had already accumulated. Not that I was buying yarn whilly-nilly. Each skein of yarn was intended for a specific project. Some of the yarn was for shawls I had printed out patterns for. Some of the yarn had actually started to become some of these shaw…