Friday, November 6, 2015

Update after my October scan

A hassidic rebbe once said, “Let me not die while I am still alive.”

My life has been a blur of work (65 hours a week) and hospital visits and exercise. I keep asking myself why I am spending so much time on work as I’m not even sure if this is my last semester. The truth is that I have always worked like this and I’m making darn sure that I end that way too. Of course, no one at work has any idea of what else I balance to work as I do and I don’t intend to give them any reason to. I’ve had a couple of days when I find it really difficult to haul my butt to the uni but once I’m there, automatic mode and the enthusiasm of youth takes over and I do my 10 hours. And I am grateful for flexible hours, and a job that is not physically demanding.

Living with metastatic breast cancer is a tsunami. We just try to keep our heads above water for as long as possible.

Onto my scan. One delightful word: stable. I stay on the Gemzar and Carboplatin for the time being. My liver disease is the biggest threat I face right now.

A couple of positive changes have happened as well. I got a dog from the puppy rescue. She’s a delightful, energetic dachshund mix. And I do not understate the mix part. She is part of many breeds but although she is only six pounds of love at five months old, she has the speed of a greyhound and all the hunting instinct of a dachshund. She follows me around everywhere – no quiet bathroom breaks allowed. She also drags me out of the house in all weather for morning and afternoon mile walks. Well, she tries to make it a run but right now my hemoglobin is so low that I can barely run a few steps without struggling for breath. (Aside: My hemoglobin is not low enough for a blood transfusion yet, but it’s low enough for the infusion center to have to get permission to treat. The blood transfusion cut off is below 7 (or else symptomatic) but the infusion center cut off is below 9. Mine is 8.1 and sliding down.  I am never going to admit to the doctor that I can no longer climb a single flight of stairs without grasping the railing as though I have had a bit too much fun and waiting for my heart to slow to a manageable pace. I fondly remember just a short time ago when I could run up seven flights of stairs without a pause.) I still walk 50 miles a week outside or on the treadmill of course. That remains my priority.

The second bit of good news is that I got insurance permission to give myself neupogen at home. This saves me driving for two hours 10 days out of every 21. Now, I don’t understand insurance at all. It costs thousands more to have the neupogen in the infusion center than it does to give myself the injections at home, but if I have it in the infusion center then I have no co-pay. However, if I give myself the neupogen then I have a co-pay of $125 every three weeks. It’s the same puzzle I had over my prescription for dexamethasone. The insurance initially denied it, but after protest they approved it. When I went to pick it up at the pharmacy, I saw that my co-pay covered the entire cost. They had denied me a drug that I needed that actually cost them nothing.

The worst news of course was that I had a port placed. This is an outward symbol that I have moved from living with breast cancer to dying of it. It is incredibly painful as it is situated over a nerve that unexpectedly launches shooting pains across my chest and down my arm, paralyzing the right arm for a few seconds. Sometimes the pain is so bad that I have to sit down before I faint.

From the Mom the stress-o-meter department came a bout of sheer terror. My son had major cardio-thoracic surgery and was in hospital for a week. We had some scary days and nights, but he is home now on heavy pain pills but recovering. He also has a seriously impressive scar across his chest. He has a metal bar in his chest for six months so the recovery is not going to be rapid. It is times like these that I am so thankful to still be alive. This would have been so much more difficult if I had not been around to change dressings and be the Mom. The good news on the children front is that my daughter broke up with her boyfriend. It was not that he was a terrible person but he was clearly just not going anywhere #RichKidSyndrome.

On a wildly optimistic note, I bought tickets for the Harry Potter show in London for December 2016. However, I am a realist and made a backup plan in the likelihood that I won’t make it. My husband said that the tickets were something to make sure I was alive for. I gently reminded him that survival is not due to force of will. 


  1. I had a similar complain about giving myself neupogen injections. The cost to my insurance company of giving it to myself at home was much lower than neulasta at the cancer center or going to have a nurse administer the shots. I could have had co-pay assistance from the pharmaceutical company if I'd have gone to the cancer center, making my out of pocket costs zero. Instead, I had to pay $1550 for my first seven shots.

    1. Your story is worse than mine. This is outrageous.

  2. I am behind at reading (I am fired!). Yay for stable! Awesome about the Harry Potter show (I will have to look up what that is, sounds neat). Sorry about your son :( hope he is doing much better. Best of all, yay for a doggy!!!

    1. Yeah, if I stop hearing from you, a joy will leave me. Don't even think about it.