A new chemo is like a box of chocolates. You never know what you are going to get.
I started out my week debating with myself if I had made the right choice. I had pushed for this (although it had been an option thrown out there in December). In my heart I do. I want Perjeta in my regimen, I know they may change at one point how and when you have access to it – but I don’t want to find out they haven’t changed it and not be able to get it. The reason I care so much about accessing Perjeta is articles like this one:
Patients who received the drug — Perjeta, from the Swiss drug maker Roche — had a median survival time nearly 16 months longer than those in the control group.
That is over a year! One extra year from one medication. <3
I got a letter from my insurance company that they requested information from my doctor for their pre-approval process for Perjeta, if they don’t receive it, my Perjeta prescription will be denied. Oh… um… we already did that. -sigh- I am assuming they want to verify we did it under the EXACT circumstances that insurance companies require, so that they will pay for it (which is why it had to be my first HER2+ medication… AND administered with Taxotere or Taxol…).
People ask me how long I will be on this chemo – the answer is – as long as it is working. 🙂 Eventually we will discontinue the Taxotere part of my cocktail. Likely if my tumor markers start to go back up, or if my scans and markers look stable enough we can give me a break. At some point we will also take Perjeta out and I will be left with Herceptin off and on (as long as my heart can take it, but it is reversible heart damage, so you heal if they take you off for a bit). We will then probably add back in an estrogen blocker and go that route for a bit (unless we can find some trial to pop me on somewhere).
The day I had chemo I was as white as a sheet. Super whiteeee. My friend Amy and I decided I could start haunting people, so I am putting my “haunt” list together. Watch out people! On my chemo days #ChemoHauntingof2015 is alive and well. I may come out of the bushes. I may come out of your chimney. I may not come at all… Depends on when all of those steroids wear off and if I am taking a nap.
I felt mostly ok Friday and Saturday (of course I was on steroids those days, helpful much?). Sunday night I started to really feel chemo-ish. Monday morning I thought I would actually make it to work… I didn’t make it further than my bathroom. I wasn’t throwing up, but I will leave the rest up to your imagination. I spent most of the day trying to just sleep as much as I could to get the day to pass. When I woke up from my haze, I was feeling pretty sorry for myself. My doorbell rang and these arrived:
I actually cried a little bit, happy tears. It put my heart in a better place.
Tuesday I woke up and decided to give it the old fashioned try and go to work. After two hours I was pretty sure I was going to turn around and go home. Somehow I ended up staying there until 4:00 PM. I know some people are asking why I am still working – I deep down love my job. I have worked for my company for 8 1/2 years. It is very rewarding. It is also a very stressful job if I let it get to me (which I do, so I won’t pretend like I am any good at managing stress). I can get a chunk of work done from home. I was getting work done in the infusion room on Friday, I was getting work done when I would wake up for an hour here or there Monday. I have a ton of amazing employees, coworkers and boss folk. I also have really good health insurance, if I stop working, I have to start up with a new medical team (I am double insured, Mike’s work has me covered too, but they don’t have the same hospitals covered).
I am used to being a high performer with my career and work a key part of who I am. I am constantly weighing the work/cancer/career thing – but right now I keep doing my best and hopefully that is good enough.
So far on chemo, my tongue feels like I burnt it on something super hot. All of my tastebuds feel/taste burnt. Most of what I eat has an off taste, ketchup was probably the most horrendous item I put in my mouth. For a few days anything mildly sweet (things like ketchup) would give me that sour sensation you get in your jaw. My digestive system is on permanent strike, still is. I am not sure how much Imodium you are allowed to take (I kid, I follow instructions), but I have to take it every day if my husband or anyone wants to see my face. I am eating normally, Mike is feeding me, I am feeding me, but I have still lost 4 pounds in the last week. By now I am starting to come out of the chemo fog, feeling a bit more normal and onward and upward.
We experimented with my pain regimen this week and the adjustments have had me in the least amount of pain I have been in for months. I am actually less groggy during the day and sleeping through the night. It is amazing.
My ONJ decided to open up a bit more. Not a ton, but enough to make me grimace. It acted a little more infected and has been borderline hmmmmm for the past week. I see my oral surgeon on Tuesday, so we can assess the damage. I should be starting to go into my nadir this week (the part with the lowest white blood cell count from chemo) so we will see how everything holds up (literally and figuratively).
I had that moment where I realized I had no idea when my hair is going to fall out. Two weeks. Second treatment? No clue. What I did know is that I didn’t want to deal with long hair coming out. I chopped my hair before it came out the first time in preparation. So I had my friend Amber come over and cut my hair as short as possible, but still keep a little style in preparation for the inevitable. I considered whether or not I could start cold caps at the point and attempt to save my hair – but I had had a suspicious glowing spot on the back of my scalp. So I figure I should just chemo my scalp either way.
I am starting to get prepped for the trip to MD Anderson in Houston. I don’t know what to expect. I am nervous. We booked a hotel near the hospital, they are more forgiving on cancellation on the off chance I can grab a flight out early. I need to improve my art of booking changeable air reservations (didn’t quite happen) and I just ended up using my saved up miles instead (and a few donated miles). Ticket prices had gone up so much I couldn’t stomach the price to two changeable tickets for Mike and I, so I got creative. I figure it they don’t book me for the full week at the hospital, I will just see if Delta will send me out on any earlier flight (since I know my flight home is pretty much sold out now and I bet they wouldn’t mind that ticket back). Otherwise I am going to live in a hotel room in Houston for a week (most of the ones near the hospital have a kitchen, as does ours, so it will be more like a home).