Diagnosed at age 50 with Stage IV breast cancer (mets to lungs). Treatment plan included 7 rounds of chemo (Taxotare/Perjeta/Herceptin) once every 3 weeks. Then a unilateral mastectomy with lymph node dissection. 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.
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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 got to meet the people who work for the company where the medicine that keeps me alive is manufactured. How cool is that?!
Genentech is the biotech company that produces two of my maintenance medications, Herceptin and Perjeta. Click on the links if you want more information on the company and/or the medicines and what they do. I receive Herceptin and Perjeta via infusion once every three weeks. These medicines keep the cancer at bay. I will be on them for the rest of my life.
Genentech has a program called Patient Connect. I was a part of that this year. I flew out to San Francisco to visit the company and to talk to their employees about my experience with Perjeta. Over the course of three days, 12 patients, on different medications, were there to speak to the employees. My day was Friday. The day started at 7:15am when a car picked my husband and I up from the hotel to drive us to the campus. After a quick breakfast, it was make…
All of my treatments, tests, oncology, and cardiology appointments take place at Georgetown University Medical Center. With no traffic, it usually takes about 40 minutes to get there from home. In rush hour, it has taken up to two hours. I try to consolidate my appointments in as few days as possible, because it can take so long to get there, and to minimize the number of days taken off from work. I thought I'd share with you what a day looks like. Actually, I'll illustrate "regular" days and "medical" days.
A typical, "normal, every day" work day has me working at a high school as a teacher's aide. I love it. My co-workers, the students -- the day is never dull. Most days are exhausting, sometimes quite entertaining; never dull. :) Before my treatments started a year ago, a normal day would consist of actually doing productive, "normal" things after work. I would make dinner (most days), play with the dog, drive the boys…
Yesterday I saw someone I haven't seen since my diagnosis (and long hair). I was standing nearby while she chatted with someone else. It was clear she didn't recognize me until I spoke to her. She seemed glad to see me and asked how I was. I explained, in the shortest version I can, that I'm "stable" and "no evidence of active disease" and will continue to be on treatment for the rest of my life. When she asked, "How are you doing?" my answer was "Fine; I'm still alive!" The look on her face.... I really need to remember that not everyone is comfortable with the jokes ... but it's not just that; sometimes I'm not joking but it comes out that way unintentionally.
The other day I was checking out at the grocery store, and a prompt came up on the credit card scanner asking if I wanted to donate to cancer research. I said, out loud, "No, I've already donated enough to cancer research." Hahahaha! I'm…