When Treatment Delays Impact Life: A Personal Account

I’m a pretty resilient person. I’ve faced a lot and retained my sense of humor (albeit more dark these days), my ability to see silver linings, the ability to keep going despite hardships, despite set backs, despite bad news over and over. It’s not been easy but I’ve developed a lot of tools to keep going.

But some days, it seems too hard.

Some days, it’s just too much.

I had a day like that a few weeks ago when I showed up for my Zometa infusion. For those of you who aren’t familiar with this medication, Zometa is a bisphosphonate, given for the affects of bone metasteses in an IV (intravenous drip). The manufacturer recommends it be given over fifteen (15) minutes and it comes diluted in some sodium-chloride.

Over the years, I’ve learned that my body is super sensitive to Zometa and despite the fact that most people only experience significant side effects to the first infusion, nearly nine (9) years later, I still experience the deep bone pain, body aches, fever, etc., sometimes called the “Zometa flu,” which isn’t typical after the first infusion. The aftermath can be really debilitating and causes me to miss important events, so I will do a lot to avoid those side effects.

Over the years, I’ve figured out a few tricks to ameliorate the negative affects and maintain my quality of life while dealing with all of the cancer stuff. It’s actually quite simple, my “trick” — I get the infusion over an hour instead of the quicker 15 minutes and I get it with extra fluids to dilute the affects. This does mean my appointments last a bit longer but the benefits are significant to my quality of life.

Sounds simple, just some extra time and some saline.

But when I showed up for my appointment as few weeks ago, after having gotten clearance from my dentist and dental oncologist to get the infusion after my Orthopaedic-oncologist pushed for me to get it more often (I have osteonecrosis of the jaw from Zometa, so it takes a lot of steps just to be cleared), nothing was simple.

Let me just repeat for context that I had to attend multiple appointments and get extra X-rays just to get cleared for this treatment and simply needed some extra time and extra fluids so that I don’t spend multiple days in bed unable to function.

First, after not arriving in my room for over thirty (30) minutes after my appointment start time, the nurse had some difficulty. She didn’t have the right items to access my port (specifically a needle) and wasn’t able to readily locate the part of my port where the needle needed to be inserted. The port worked great once she had her ducks in a row and by the time she had the 8 or 9 vials of blood ready to be tested, it was nearly an hour after my appointment start time.

Then, the bloodwork was delayed. In order to get Zometa, they check kidney function among other things. Those results have to be available before the infusion can begin. It was several hours after the appointment start time to get those results. All clear, so we could get started, right?

Nope.

Despite me explaining to the nurse, to the administrator, to the pharmacist, to my actual provider many times over the years, the week before my appointment, and again today how important it is to get fluids and to have the zometa diluted as I receive it over a hour, it is constantly new information to them. After the 8th time explaining, the tears overwhelmed me. I was sobbing while trying to explain that I don’t want to lose my entire weekend to feeling horrible. That just some fluids would help. That I need to be present for my family, to attend events and not to be stuck in bed. And don’t get me started on the administrators who refuse to wear a mask or even step back so I don’t get sick.

And then I get lectured on being nice, that they are doing their best, that I need to be patient, that maybe I should consider somewhere else for my treatment where a lab is more responsive. It’s never the fault of anyone patient-facing; it’s the paperwork, the delays from on different departments, the issues are always someone else’s fault, someone who you never see.

And forget anyone actually taking responsibility — even though I was careful, calm, kept my voice down and never used unkind language, just restated the facts, the inescapable facts, I was treated like a nuisance, like I was causing trouble and just needed to go away.

In the end, they gave me the fluids. In the end, I lost all productivity for the morning into the afternoon. I missed important meetings. I missed phone calls that are an important part of my mental health. I was lectured on patience. I was told that waiting for hours longer than my scheduled appointment was reasonable. I was told that I need to adjust my expectations, not that they should schedule sufficient time to handle their own known delays. After being treated like I was a nuisance from the beginning, brought to tears because they wouldn’t take me seriously, I was told that I needed to be nicer, to not “snap” at people. Maybe next time I should actually snap at them, just to show how I didn’t this time, nearly all of the time.

I know my body and I know what I need in order to not suffer debilitating side effects. I already have the “rare” side effect of my jaw bone dying and causing me to lose at least one tooth, with another on its way out. My body is really sensitive to certain things and even if that’s not the norm, not what the manufacturer will admit, it’s real and only I suffer the consequences, never the medical staff.

Despite the cost, I am firm on a few things.

I refuse to trade my quality of life for the convenience of the people at the infusion center. I refuse to capitulate to the “standard of care” that does not serve me, that negatively affects my body and my family. I refuse to allow paperwork problems to affect the next 3-4 days of my life. I refuse to go along just because people don’t like it when I insist on what is good for me. I refuse to stop pointing out when they fail to live up to their own schedule. I refuse to shut up and take whatever they decide.

But it costs me.

And I don’t like one bit crying in public.

I don’t like one bit having to know way too much about my own treatment plan because they won’t follow it. Their own treatment plan. They can’t follow their own treatment plan.

I had an appointment at 8:45 am for 2 hours. I walked out at after 1 pm, over 4 hours later. Maybe the paperwork was fixed for next time, I hope so. I can’t not get this treatment and I can’t allow this treatment to affect my quality of life so negatively.

This time, I got what I needed (mostly, they did “forget” the heparin flush that keeps my port working). This time, despite missing things important to me, I was able to get treatment and it didn’t tank the rest of my week. This time, this time it worked out.

But at what cost to me?