Palliative smugness

I was so eager to go to school this morning and feeling so up-and-about-y that I really wanted to ignore my shortness of breath that was getting a little worse as the morning went on. Finally, realizing that I really didn’t want to be dealing with this over the weekend and remembering how low my oxygenation had been yesterday, I called my nurse.

She wasn’t in, but another nurse I really like called me back. I was wondering if I needed another thoro, a pleural drain, or oxygen for home. She checked with Dr. Campbell and got back to me in minutes with the instruction to get to the cancer center for a chest X-ray with a wet read and then to come up to their office to check my blood oxygenation.

A few phone calls to Mom, Dad, and Mark later and Dad is dropping me off at the cancer center. Mom has beaten me there.

We go through the tests and learn that my blood oxygenation isn’t low enough to require oxygen at home and that my chest X-ray shows a minimal increase in fluid from the one taken after the thoro yesterday. So, Campbell would like an echocardiogram to check my heart stat.

While The nurse is scheduling this, I overhear someone say “anemia” in the same sentence as “shortness of breath” and realize that no one has drawn my blood today. I ask the nurse if we should check for this (especially since I thought I was anemic on Tuesday) and she sends the lab back for a finger poke. I ask the lab for an arm stick instead so that we have enough blood for a type and cross if I need a transfusion.

While we wait for the lab work (the day has involved a LOT of waiting), I get an appointment for an echo tomorrow afternoon. Then, the lab comes back. My hemoglobin is at 8.5….definitely anemic and transfusion worthy. Also explains the nausea and weakness I’ve had. Transfusion scheduled for tomorrow…good thing we did enough blood for a type and cross.

We are headed home and I’m on the phone to Mark with the tedious blow by blow.

“How are you feeling now?” he asks.

“Better,” I say, “I’m not thinking about my breathing because I’m so smug.”

“Ah,” he says, “palliative smugness.”

Indeed.

The business

This new med,Ixempra, has been giving me the business. And pleural fluid has been on its heels to add insult to injury.
Last week Tuesday I started the new med. Mom had a bad cold so I asked her not to come with me. I thought I would be fine alone.

When I got to the cancer center I learned that my regular nurse was gone and the one I had was incredibly busy. Probably not the best day to have gone it alone.

My brother emailed saying that his morning meetings we cancelled and wondered if he should come down. No, I insisted. Then I got a call from a nurse scheduling me for my thorocentecis the next day. I started coughing and couldn’t stop. It got ugly. I got wise. Emailed Chris to take him up on his offer of coming by. When I heard his shoes on the tile floor I started to cry with relief.

Chris bolstered me and fed me. The nurse told me I could expect some fatigue from the chemo and I was on my way.

On Wednesday I got my right lung drained and was breathing well. But on Wednesday night pain kicked in. I managed on Thursday and through the weekend with ibuprofen. By Sunday I was getting puny and wondering when the pain was going to abate.

By Monday morning the pain was excruciating. But, blessedly, Mom was over her cold! So, Monday she arrived to me writhing in pain. Of course, she came with great prescription pain killers (it’s good to have an uncle who’s a doctor!). Tuesday, we ventured to Target after my long morning nap and I was overcome with nausea. So mom drives me down to see the nurse and I get some hydration. We had thought that my hemoglobin would be low enough for a transfusion…close, but no. And today I call Mom unable to breathe. This time we go in for a thorocentecis and my blood oxygen level is 82. Under 90 and you go on oxygen. Mom even has to drive me up to the 2nd floor in a wheelchair because I’m so short of breath. After the thoro, I’m doing much better.

So, Monday pain. Tuesday, nausea. Wednesday, can’t breath. Wondering what tomorrow will bring.

Whatever it may bring, I know it will also bring my mom. With Dad right behind, vacuum, drill, or dog leash in hand.

Ixempra may be giving me the business, but it’s messin with the wrong family!

October update

It has been a while since I posted here. Since my last post I’ve been feeling pretty good. With the exception of about 4 days every 3 weeks, I have been able to clip along rather happily. School has gotten off to a good start for both Zoe and me. And we celebrated Mark’s 40th birthday in September. We had great fun heaping love on the gentle keeper of my heart. (Thank you, Wallis family, for making it perfect!!)

Even Birdie celebrated a birthday. No trip to Chicago for her, but she did get a squeaky toy which was destroyed within hours. She continues to charm and aggravate us in almost equal measure. OK, more charm than aggravation. She’s awfully cute.

I won’t get into all of the machinations that precipitated this, but today Mark and I met with Dr. Campbell because my tumor markers were slightly up and a chest xray showed increased nodule size and increased pleural fluid. I had noticed the increased fluid. It is nothing like it was last winter, but I do have some discomfort (like a side stitch). I’m still able to do normal things like walk the dog, etc.

However, because of the blood work and xray, Campbell thought we should move on to a new drug. So, in two weeks I’ll be starting Ixempro. It’s from a new family of cancer fighting drugs and he thinks I’ll do well on it. I did my quick internet search and the possible side effects are all things I’ve dealt with before.

Only bummer is that the drug could take my hard-won hair from me. This has been possible on other drugs and hasn’t happened, so I’m staying optimistic and keeping my hats out of sight.

Thank you for all you do to support us. We are looking forward to a good fall and winter. Hope you are too.