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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The following advice is based on my own experience with cancer -- chemo, surgery, and all that goes with it:
If you have a
Port site will be sore for a time after insertion -- sleep sitting up
for a time.
Get one of those things to wrap around the seat belt in the car to
cushion port site.I’ve found that these
Port Pillows work wonderfully, and she’ll mail you one for free:www.portpillows.com
Put Lidocaine on port site before chemo (your infusion nurses may give
you Lidocaine and Tegaderm (the clear plastic to cover it), or your doctor may
give you a prescription for Lidocaine, and you can cover it with Saran Wrap).
Make sure the shirt you wear to chemo makes it easy to access your port.
Suck on a popsicle or ice chips as chemo med is going is to prevent
Use plastic utensils to offset the metallic taste when eating.
Mints or hard candy to help with the metallic taste, and dry
mouth.What works best for me at the
mints they hand out at Chick-fil-A.
Take blanket to chemo, as most infusion centers are chilly (or, most
infusion centers have blankets).
Pack light.For my first chemo
session, I took a bag with a book, some knitting, a coloring book and colored
pencils, snacks for me and my husband, a few magazines, tons of stuff to keep
me occupied.I ended up sleeping through
most of it.Now I bring some knitting
and make sure I have a book loaded on my Overdrive or Kindle app on my
phone.Some infusion centers provide snacks
and/or lunch.Check to see if yours
does.Definitely bring a notepad and
If having Neulasta after chemo, take
Tylenol before shot
Claritin the morning of, and three mornings
Set up a notebook to keep all of your medical information.
Register for a Look Good, Feel Better session
Sign up with Cleaning for a Reason
Look into a retreat for your family with Little Pink Houses of Hope
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…