Days Like These – February 8, 2015

I’m a normally positive person.  I try to see the good rather than the bad.  Being positive, I’m sure, will help me get through this next year.  Let me tell you, though, that yesterday was not one of those days.

Let’s start with Friday.  My diarrhea did not resolve with the increased dosage of Lomotil that Margaret and I agreed upon, so I sent her a message at 5:30 am letting her know.  I’m sure there was discussion behind the scenes, and eventually Margaret called to let me know they were moving to the next step and prescribing me Opium Tincture. Yep, opium.  My intestines need to be high, I guess, so they’ll stop working so much.  It’s a controlled substance, the kind of drug which needs to be typed out, filled out in triplicate, and cannot be called into a pharmacy.  Typically this type of drug can also only be picked up by the patient, but Oncology must have cleared it with the PAMF pharmacy to let my sister pick it up.  While there, the pharmacist took Chris aside and said, “you know, your sister’s co-pay is $560….”  My pharmacy benefit of my insurance makes me pay for the first $1000 of the year’s prescriptions, and since it’s early in the year, the copay was a whopping $560!

My sister was kind enough to bring the opium tincture to me, and after 2 doses, the diarrhea was better.  Not completely resolved, but better.  We got up on the early side yesterday because we had 3 scheduled appointments to visit memory care facilities for my mom, who is in the later stages of Alzheimer’s.  I managed to throw up 4 times during that stretch, and the minute I got home, the diarrhea was back to what it was.  I was frustrated, tired and felt crappy.  Did I trade one side effect for another??  Will I have diarrhea and/or vomiting for 18 weeks?

I checked with my sister (the doctor) and she said it would be fine to take both Zofran and Compazine, just at alternate times.  So I started that, and made sure I took the opium tincture at regular intervals.  I had a much better night: managed to keep down some rice, then some soup.   I had a great night’s sleep (which has never been my problem), and woke up with energy and feeling pretty okay.  I still have some diarrhea, but no vomiting, which is great.  I also just woke up from a 4 hour nap, so obviously my energy is limited, but I’ll take it.

This weekend one of the animal transport organizations for which I volunteer made it a Warrior Weekend.  The volunteer drivers dressed in pink, the kitties are decked out in pink and all sorts of posts are pink.  I am so honored to have so many thinking of me, cheering me on as kitties make their way to furever homes.  Rock the pink!

“You like to be unusual, but this seems to be taking it to extremes” – February 5, 2015

First off, a big happy birthday to my hubby!  I’m sure this is not the way he wanted to spend his birthday, but he remains the sweetest man around.  I sent him off to the Stanford-UCLA basketball game, which apparently is no birthday present at all.

I’m having an unusual reaction to the Perjeta.  I talked to the “diarrhea” nurse for a while today.  We have a plan of attack for the next round of treatment, which is good.  Of primary concern for me now, though, is how to resolve the current situation, which is pretty much non-stop diarrhea.  Margaret gave me some things to do, and then said that if the diarrhea doesn’t stop tomorrow that there were other drugs they could prescribe.  They’d like the situation to resolve before the weekend, and believe me, so do I.

I also talked to her about the nausea.  She basically said that I can take Compazine for as long as I need to, and to take it so that I don’t vomit.  So I’m going to take it every 6 hours.  I didn’t know if I should/could continue to take it, especially if I didn’t feel nauseous all the time, but we’d rather avoid vomiting.

Over the past few days my mouth has changed some.  My tongue is numb in places, and I’ve noticed some sore spots in my mouth.  I think I’ll start using the mouth rinse that my dentist recommended tonight.

I’ve come up with another way for my friends to help celebrate the end of this journey. Of course I’d love for everyone to go skydiving, but recognize that’s not for everyone. This idea also allows for folks everywhere to pitch in.  Hopefully I will be recovered enough to participate in the Avon 39: The Walk to End Breast Cancer.  It happens the 2nd weekend of July every year in 8 cities, so if you’re near one of the cities, participate in the walk; if you’re not, then help by sponsoring someone.  So mark your calendars for 2016!

*The quote above is from my friend and colleague Julie, for whom my absence this week from work has hit the hardest.  Thank you, Julie, for everything you do every day, but especially this week.  I hope to be back next week at full strength.