Rough Waters at the Cancer Clinic

This is really just an essay to help me cope with cancer by airing my grievances about small issues that come up routinely in healthcare. No real updates to share. I have now started all medications and seem to be tolerating them well. Because my oral medication was delayed due to insurance, I got a break from taking daily medications over the holidays (we also spent a wonderful week in Florida and on a cruise ship where we got to escape reality and focus on the expansive blue ocean, it was heavenly). For a few weeks, I forgot about the cancer battle, it was nice. 

I write the following not to elicit sympathy. My hassles with my cancer care are minor in the grand scheme of things and not unique to me. These slight inconveniences just add up and writing about them is a great way for me to process and move on. I’m guessing others feel the same and I would love to hear those stories. The following is also not to ask for advice or a recommendation of a “better” clinic. This is literally just venting and rambling. And fair warning, this comes across pretty negative. I’m not generally that negative. I haven’t taken a “turn for the worse” and given up. I just hit a bad patch with the clinic and I’m sure things will get better as we get into our routine with the new plan. I also realize there are way bigger problems in healthcare than what I’m writing about. While I definitely recognize and have dealt with those issues also, that is beyond the scope of today’s post.

The New and Unimproved Cancer Center

The cancer center where I have always received care moved to a new location recently. It’s really a huge positive for me because the new clinic is about 10 minutes closer to my house and it is also on the outskirts of town, so less traffic and better parking. The part I don’t like about the clinic is that it seems really sterile. All the waiting areas are in large atriums (very open concept) and the offices (even scheduling offices) are closed off behind doors, so it feels like the entire hospital is a large barrier between the staff and patients. To me it comes off as very unwelcoming. The infusion center is another issue altogether. First of all, there is not enough seating. I think they forgot that many cancer patients bring caregivers with them and the end result is that really sick people might not have a chair to sit on while they wait (usually quite a while, because that’s how the infusion center rolls) for their treatment. What really annoyed me was that not only is the whole area very white, sterile (think fluorescent lights), and gives off an institutional vibe, but I guess to combat this, they haphazardly threw some books and knitting projects on a shelf. One was a book entitled 14,000 Reasons to be Happy or something like that. I’ll tell you how to be happy, don’t hang out in that God forsaken place. They should have a book entitled “You have cancer, it Sucks, your life sucks, and we’re making it even worse with our lack of awareness of your time and our stupid seating area that doesn’t have enough seats”. Then, on top of that they have some pieces of…not sure what to call it…knit-ware?… that I guess someone knitted who thought, hey cancer patients don’t need anything of quality. Sure, they had a few knitted hats. Those are fine. I’m sure in the world of knitting, a hat is quite a feat. And I guess it makes sense for patients losing their hair. But, far more prevalent in the other bin, were small knitted squares. Not small blankets, like 8” x 8” squares. What Thee Heck. What are they doing, throwing their crap projects in the area where cancer patients don’t even have a spot to sit? It’s insulting. What is one to do with a small, knitted square? Sure, if my son or parent had knitted it, but some random knitter thinking they’re saving the cancer patients with their squares? Ugh…and to make matters worse, during my first visit to this painfully poorly planned infusion area, someone forgot to put my order in. This meant I waited there for about an hour, watching people going in and out of their appointments like I was some creepy lady who didn’t have anything better to do with my time all because no one put the order in for my treatment. I should mention also that the clinic was crowded and visibly behind (I almost lost out on one of the few remaining chairs and was close to making a floor seat cushion out of four of their knitted squares). The nurses were running around frantically, so it felt pointless and borderline rude to ask why the wait was so long. I definitely learned my lesson, now I triple check to make sure someone put the order in before heading to infusion. 

Scheduling Fiascos

 There are lots of moving pieces in starting a new treatment regimen. While every oncologist has been on the ball in terms of getting things scheduled, creating treatment and follow up plans, and ordering new drugs and labs; the bottom line is that the best person to really manage and understand what things need to happen is the patient. An oncologist (or any specialty doctor really), just doesn’t have the bandwidth to obsess over medications, appointments, and scans like the actual patient. I would say as a pharmacist I have a little bit of an intuition as far as knowing what information to focus on, but any motivated patient (and luckily many patients are fairly fast learners) can quickly figure this stuff out. One thing that always seems to be messed up from the get-go is when to schedule follow-ups. I think part of that is due to the inability to predict when medication will actually be started. The most difficult situation is what I most recently experienced where I was prescribed an oral medication that took weeks to get insurance approval. Even an inpatient medication, like intravenous chemotherapy, can be tricky though. Many times insurance approval is needed for those medications as well and administration is also dependent on the infusion clinic’s schedule. This almost always results in my first few month’s worth of labs and visits being messed up and while I know it’s part of the game, it’s annoying and it’s difficult to give grace when it happens repeatedly. Shortly after the scan and then biopsy results indicated the cancer was awakening and we needed to get on with finding a new regimen, the scheduling team repeatedly only offered me appointments that were later than what my oncologist had indicated. In both cases, we had to reschedule after someone from the team informed the receptionist that what we had on the books was too far out (it is cancer after all, not cosmetic surgery). The other issue was follow up appointments that made no sense in light of the insurance fiasco that caused my medication to be held up for almost a month. No fault of the clinics (at least as far as I know, but who knows how long paperwork sits on people’s desks), but where they did drop the ball was not realizing this until 15 minutes before my appointment. Yes, you look pretty silly calling a patient 10 minutes before their appointment to tell them not to come in (spoiler alert: I was already “in”, I took the call in the clinic). 

Goserelin (Zoladex®) to continue or not to continue. And…which Z drug is it?

I have had a variety of estrogen receptor blockers and modulators since my cancer was first discovered as ER positive in 2015. I was on the modulator tamoxifen until the 2018 recurrence. At that time I was switched to a more heavy hitting regimen, letrozole (Femara®) to help my body stop making estrogen and goserelin (Zoladex®) to stop my ovaries from producing estrogen. When my cancer reappeared a few months ago, my oncologist recommended changing to a slightly different tactic with regards to estrogen since it seemed the cancer had again outsmarted my medication. I started fulvestrant (Faslodex®) to hopefully trick the cancer cells with a new estrogen receptor modulator. This drug is given as a monthly injection and boy, does that first injection mess you up. My hips (the place where the injection is given) hurt immediately. Then my whole body felt sick, dizziness and nausea swept over me simultaneously. Luckily the second injection was better. What I noticed in my treatment plan was that not only was the letrozole to be stopped, but the goserelin also. This was a little confusing to me, since unlike letrozole and fulvestrant which act on the body as a whole, goserelin only targets ovarian production of estrogen. This led me to question why we would let my ovaries “start up again” after essentially I had reached a place of being comfortably postmenopausal. Cancer aside, it seemed like we might be playing with hormonal fire to an extent. I’m 45, so would I indeed go back to pre-menopause, only to go back into menopause naturally? Or would I just stay postmenopausal anyway at this point? Either way, it seemed like a reckless roll of the dice with my hormones and I didn’t like it. Long story short, I contacted my oncologist and we got the goserelin (Zoladex®) added back to my treatment plan. Here’s where the fun starts. A receptionist called me to schedule the goserelin which I will now just refer to as Zoladex® for story telling purposes. The tricky part is that Zoladex® is given every 12 weeks, which would have put it due 1 week after the Faslodex® and in theory this would continue as long as I received both drugs because Faslodex® is every 4 weeks and Zoladex® every 12, so they would always be a week off. Part of my cancer-stress management involves minimizing the amount of appointments I have. This is tricky. I swear I would probably end up going in for something multiple times every week if I didn’t stay on top of micromanaging how the team schedules my appointments. As it turns out though, we had one much more disturbing hurdle to cross first. When the receptionist called, she told me she needed to schedule my Zometa®. Zometa® is a completely different drug. It is for osteoporosis but many times used in cancer patients with bone involvement. I had been on it previously, but discontinued due to risk of serious side effects with extended use. I initially just let it go, because after all she’s just the receptionist, it’s not like she was actually giving me the drug right then. However, she followed up with, “now this is a 30 minute infusion”. Wrong. Just totally wrong, wrong drug, wrong administration (Zoladex® is an injection, not an infusion), wrong time frame. So, I reluctantly called her out. Nope, wrong drug. Then she proceeded to tell me it was the same drug, just a different name. Nope, wrong again, they are totally different drugs. Okay, fine, she went on to mumble something about “grabbing the wrong Z-name”. I kid you not, this actually happened.

And that’s it. If you’ve stayed with me until the end, you are probably the only one, but rest assured I feel 100 times better:).