Tuesday, March 14, 2017

The Dance - Healing Update

I met with my oncologist yesterday.

I am not an oncologist. But I like to play one in the Mallory House.

We- Phil and I had been talking about chemo and what I wanted to do. We are just a month out from brain surgery. I "skipped" chemo the week of surgery. I wanted to feel stronger before starting, but know that with too much time in between- we are giving cancer a chance to grow. It's a careful dance.

Kadcyla is the "chemo" I am on. It is a targeted monoclonal immunotherapy drug. I call it chemo because it's easier. It is given by IV and takes only about a half an hour to infuse. The bloodwork and mixing of the chemo take another couple of hours each visit to the chemo bay. With Kadcyla- chemotherapy molecule is attached to a known marker that my cancer has. Like a lock and key- the meds only attach where the marker is. It is more specific- less icky side effects because less normal cells are being hit with meds the chemo sticks to the cancer cells and hopefully stops it.  "Traditional" chemotherapy is slash and burn. It damages good cells too- hence the really sick and hair loss issues.

Back to it. 
So I warned Phil that at the doctor appt- our oncologist(since Phil is at every appointment and every chemo possible- I try to say our- don't know many others who have such a great partner through this) would congratulate us on pathology, recommend a PET scan, and walk us over to chemo. I also told Phil that I wasn't quite ready for chemo.  That is what he heard and as my advocate will respond to any of Jen's crazy doctor's office antics with reminders of the "plan".  Side effect wise- grand scheme- compared to most chemo meds- Kadcyla had been "easy". It's working, I get tired and achey- but seriously- big picture- I'm in the over 40 club now- most have similar complaints. I also get a B12 shot- because well it's good and a shot called Xgeva- that is also a monoclonal antibody and uses the whole lock and key idea with a different marker. This one is an injection that helps keep my bones from breaking- not necessarily - "fighting" the cancer cells. This is the dance- keep the body strong. The cancer cells that set up shop in bones- ultimately spread- causing pain and breaks- this shot will hopefully delay that. Dance monkey dance.

In the hospital a month ago. 
One month healing progress.
The biggest problem is we are still "fighting" cancer on multiple fronts. The chemos do not really go into the brain. Which is why I had gamma knife radiation years ago and surgery a month ago. I am responding to Kadcyla very well and it is keeping the breast cancer cells who set up camp in my lungs, bones and other areas in check. We are dancing with the devil. I am dancing with the devil. As long as he/she/it understands it's my body- we coexist and I do what I can to remind him whose body it is. I keep my body as strong as possible- and here is the tough balance. Surgery of course is a hit to strength. If you tax your body with too many spots to heal, sometimes it gets overwhelmed.

Our oncologist- congratulates us on the pathology and recommends the PET scan and asks what I'd like to do about chemo. We can do it today while we are here- come back later this week or next week- but really he doesn't want to wait too long. Which is what I figured. And there are many
worse off than me - it's best to keep one step in front of the devil with this dance. I may not be at my strongest- but I have extra help this week and next week is my birthday and spring break- Ok I'll go. I'll go. I'll go. I think of all the women in the UK or with insurance that wont cover this med. I think of how those spots on the PET scan look when the disease progresses. I think that overall- it would be nice to have a break but it's gonna be nicer to be around as long as possible. So I say ok, let's do it. Phil looks concerned. Then our onc says he is going to retire in April. GDMFCSSOB.

So we have to get things in order. He asks Phil about his new job and my forever humble husband says it's going well- a lot to learn and different responsibilities. Beloved onc asks if it is a liaison position. I wait to see what the Buddha says. The Buddha says he is the commander and explains. That's my guy. No pomp there. A little bit of pride(mostly mine) and a whole lot of out of our control circumstance. Ooh now they are talking about me- Phil was hoping I'd get more of a break from chemo. Beloved onc says- we had a break, we don't want to wait too much longer- this is the advocate part. Beloved Buddha says he just hoped I'd be a bit stronger and more rested than I am- aka doing better since I came out of the gate so well- he didn't see the plateau coming. (I'm still not driving, I don't get out much and I tire super easy)Buddha say what? I am doing great. He knows this and tells me daily- and he sees me when the tired and aches hit. Still Better than expected. So it's that gut check and the waiting for the other shoe to drop fear. Can we count beloved onc leaving as the other shoe?

We decide to let the availability of chemo med decide my fate. I know it will be there- I'm on permanent chemo orders- regular delivery. Every 3 weeks. They probably still have the dose I missed from before surgery. I know Phil is worrying about how I'll feel, worrying about the coming week, worrying about work. I tell him he can head into work- I'll call a ride when I'm done- I know he won't leave. Sometimes I hate this dance. I settle into the uncomfy chair- residual catholic guilt flogging-perhaps- everyone in the room is worse off than me- I reset my frame of mind. I am doing good. We are keeping one step ahead. Comparatively I feel better than I should or have. Let's do this. He texts his mom and Ed. They will head in to pick me up. I tell him he can go- he won't go until I am in good hands.   Barb stops by with cookies. She was afraid I would forget. I think everyone has my number. I appreciate everyone looking out for me.

I will get tired, but that's not new.
Handoff complete. 

 I'm taking advantage of the help I have and my mom will be here as long as needed, definitely here for spring break and my birthday next week. That's what moms do. That's why I do this dance.


  1. Jen, you are such a special lady! You are always thinking of other people who have it worse than you do! When I can't begin to comprehend what you are going through, how you must feel! You have a wonderful husband in Phil and great kids. I worry so much about you. Love & Hugs special lady!

  2. You are one of my heroes... Keep up the fight... we are behind you on this!!!


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)