Have you educated yourself?

Yeah, yeah, the internet can be a scary place, however it may have just the answers you need to give yourself the best shot possible. Don’t get too bogged down on the statistics and research results. Medicine moves at the speed of light, just like new cell phone technology. Many of the statistics you see online are from several years ago, are based on an age group you are not in or don’t know how determined you are to be head of the class.
Read everything you can read. Make a list of questions for your doctor and get a handle on your cancer. Your cancer may reside in your lymph glands, breast, stomach, colon etc. but what type is it? What are the specific proteins yours has? Is it an adenocarcinoma? Small cell? HER2 positive? BRACA positive? Yadda yadda yadda… All this matters. These are the indicators that match you to a chemo or immunotherapy that could result in the best outcome.
Connect. Make connections to cancer centers that may have a trial or other treatment. You and your doctor can collaborate with this distant cancer center and give you more information. Reach out to someone in your shoes. Knowledge is power and power is what you need now. Allow yourself to connect with others across the country. Even though you don’t know them, you will find yourself checking in on them. Believe me, they need a pat on the back just as much as you do!

That tingly feeling – aka Neuropathy

No, it’s not that love is in the air. Though that warm loving feeling is just what you need when you feel the tingling from neuropathy as you open the refrigerator door, drink a cold soft drink or walk into an over air-conditioned room.
From slight tingling in your fingertips and toes, to thinking you are being stabbed with a fork, to feeling paralyzed from your knees or elbows down, certain chemos ending in “-platin” have a side-effect that affects your nerve endings. It usually is temporary, however it can become permanent the longer you are on a -platin chemo. Always tell your doctor if you have any mild or severe numbness. They can reduce the level of -platin chemo by a percentage or even discontinue it completely, if absolutely necessary.
I first felt neuropathy the evening of one of my chemo sessions when I was texting and my thumbs would not bend to type my message! I tried my index fingers and they would not bend either. When I got up to walk, I almost fell over because my legs from the knees down had frozen. Also feeling cold, I wrapped up my legs and hands, went outside in the warm air and started to thaw out.
Now, 5 months after chemo ended, I am doing acupuncture to repair the nerves and restore normal feeling. Yes, cold still bothers me so I basically dress around the shoes that will keep my feet warm and carry a sweater or wrap with me always. Yes, it does feel odd to carry a sweater in 90 degree weather, but no one has ever looked at me sideways.
I bought those hot packets that hunters and skiiers use in their boots and gloves and they sure help. It’s just they are hard to find in the summer. Another thing I tried was the ThemaCare heat pads that come for your feet, back, neck, The work great, just know you can’t cut them to fit in your shoes. Electric blankets are the bee’s knees! Keep one at your office, in your bedroom and in your family room. There are even ones that are small like a shawl size, which is perfect for wrapping around your feet under your desk 😊.

So when someone say, “you must be hot”. Say, “I know” and smile.

cancer low white cell hospital mask

What do Chemo & Halloween have in common? Masks!

Who cares, if you need one, wear it! Bring out the inner child in you and rock a self-drawn smile on front. I noticed that I tended to look away when I almost encountered someone wearing a mask. My thought was that they probably are not at their best and surely don’t want to be looked at. Then, I had to wear one and I could not stand the way people diverted their eyes when I approached! What the HEY! So before my treatment one day, I took a black #Sharpie and drew a simple smile on the front of my oh so not fancy yellow mask. It worked! People in the elevator smiled at me. Doctors said they needed one! #newbusinessideathatIwishIhadtimefor Post pictures of your happy mask!
Best practices….don’t reuse your mask if you can. These are disposable and in our condition, we need to have things as clean as ultimately possible. Buy a box, ask your doc for a handful or grab one when you enter your treatment center. Many have them right at the entrance to the facility. Just have your sharpie in your pocket!
Remember, if your white cells are low, you need a mask anytime you are away from your house.

Which superhero do you want to pretend to be?

What’s that thing over there with my name on it?

It surely isn’t mine…but why is my name on it? People with cancer are those slightly defeated looking faces on TV commercials, with happy, supportive people all around them. People with cancer are the frail humans that sad movies are made about. Not me!
Face it, when you first find out you have cancer, it doesn’t seem real. Call it denial, doesn’t matter. You are going from a life of worrying about work, family events, social schedule, home repairs to a new normal that is hyper focused on saving your life. Yes, I said it, you are saving your life. Clear your calendar delegate your duties, sounds selfish but your new focus is on you.
Why do they say it hits everyone differently? Deep sadness is a guarantee. How you pick yourself up and how long you stay in the sad phase is up to you. So, yes, that thing over there (cancer) with your name on it, is yours. You don’t have to wear it everyday, you don’t have to carry it with you everywhere, you can put it away for most of your day and focus on the people, interests and activities you enjoy.
I often laugh at myself, because even though my cancer is quite serious and some would think it is always on my mind, I will have a friend stop and ask me how my condition is. I kind of jolt for a quick second as I switch gears, as I quickly remind myself they must be asking about my cancer (not if my tennis rating will be changing, due to my super-human performance on court this year – haha, or how I’m dealing with my last child about to move out of the house…). They want to know what’s new on the cancer homefront. Oh yeah…I’ve got cancer….ummm…what tests did I just have, or what am I about to have…quick…say something so you don’t look like a complete ding dong. Honestly, it’s usually just not the first thing on my mind. Admittedly, sometimes it is, though.
I think the turning point for me was after I educated myself. Once I understood what I have, how I may have contracted it (I sure don’t like the cop-out “bad luck”), and that there is hope for me, I started to educate myself. Education moved me out of the sad phase. How about you?