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Stanko Update: Thursday, June 13th Was A Dreadful, Terrible, No Good, Very Bad Day
I am just going to vent for a second. Well, a long second.
It’s Friday, June 14th. It is the date of my third chemotherapy treatment. I was supposed to receive my drugs yesterday, but Thursday turned into a nearly 12-hour day at MSK with no treatment applied at all.
I am just going to vent for a second. Well, a long second.
I got in at 7:50 AM for lab work, then had chemo treatment scheduled for 8:30 AM. I told the chemo nurse of the crippling back pain I have been having for the last three/four days (we will get to this), so she reached out to my oncologist. The big honcho decided that he wanted to get a CT Scan of my cancerous areas before continuing with Chemo, out of extreme precaution. Makes sense. It’s annoying, but it makes sense.
At this point, the nurse brought us to a new area of this MSK facility that I didn’t know about. It is like a mini ER, but I only need a CT Scan because my oncologist wants it. It’s the morning and not crowded. I have heard the chemo nurse who has escorted us to this new area EXPLICITLY tell the front desk that I need a CT scan.
Well, it turns out there was a massive break in communication somewhere because I ended up waiting in this urgent care area for about five hours. When I arrived, someone came and took notes. I waited an hour. Then another nurse came and just started talking about managing pain, my bowel movements, and all the things I had heard before. She does not know anything about the CT Scan….so we asked.
She says that I don’t need one. But, uh, respectfully, my oncologist says, and I do, and that is the reason I was sent here. She disagreed, but she said she would follow up with my oncologist. Let’s fast forward some more time. We have heard nothing about when this CT scan is happening. Only after we open the door into the hallway we overhear that there is a CT scheduled for me. It would have been nice to have known that was happening after nearly being in this room for three hours.
So now, let’s rewind to the crippling back pain. I have been waking up with spinal discomfort for three straight days. It’s been so bad that I could not get out of bed without the power of drugs. Unfortunately, I have been having to start my days with doses of Oxi, which I always try to avoid because of the drug it is and my digestive issues. On Thursday, I woke up in the worst pain I had been in since I had the five-day hospital stint. I am not sure if I wrote about that whole thing, but this was back in early May when my pulmonary embolisms (blood clots for those less medically inclined, like myself) were discovered. When I was in the hospital, I couldn’t move without howling in pain because of the blood clots and cancer symptoms working together in evil tandem. Thursday morning was the worst pain I felt since then.
Now, back to the MSK urgent care waiting room. I am eventually transferred from my room down to the radiology wing, and by this point, I am in pain because my pain medication is wearing off, and my patience level is less than zero. I was literally muttering to myself, “I am going to murder someone.” under my breath for hours.
The main instigating moment for my anger was a conversation my family members and I had with a nurse who came in. We asked why this was taking so long when we knew the exact reason why we were in this area: to simply get a CT Scan. This nurse says that just because the oncologist says so doesn’t mean anything and that they didn’t know anything about the CT Scan request. I point out that the Chemo nurse who checked us in told the front desk explicitly why we were there, but I guess the front desk receptionists and the nurses don’t communicate.
Then this nurse we are verbally battling with says that only the nurse in charge can call for what is needed medically, not the oncologist or the Chemo nurse. That statement turns out to be a back fat lie because, EVENTUALLY, we learn that the leading RN reached out to the Chemo nurse and got the written CT Scan request from the oncologist. And wow, would you look at that? I got the CT scan. So, it is not up to the RN. It came from higher up, and it happened. So this load of bullocks that we were being shoveled about protocol and communication was bullshit because there were orders to supersede. Perhaps if the stubborn nurse took two seconds to listen to us (or perhaps anyone), she would have heard something about a CT Scan.
This one nurse who really wasn’t having it with my family or I got on my nerves. I was simply pointing out a break in the communication chain between my oncologist, the nurses in the building, and what I needed as a patient. There were ways for you to take in what we told you and take steps to verify it, but you didn’t reach out to the Chemo nurse until after we blew up at you and noted how we had been waiting for hours getting zero treatment or information. This nurse just wouldn’t admit to it. And dare I point out that her RN has the final word of medical decisions mantra was bullshit.
So I got the CT Scan, and as it turns out, it was a good thing I did. It’s almost as if my oncologist knows what he’s doing. While the cancer in my stomach is improving, there are new growths on/in (not sure which language is correct) my liver, and there are some significant increases in some of the lesions already there. The new images mean a change in my Chemotreatment. A different, emotionally and physically draining part of the day.
Oh, and I suppose I should mention at this point that for my CT scan, I had to lay flat on a metal slab for about 20-30 minutes. This action immediately triggered my back, and I was suddenly in tear-inducing pain again. So I get wheel-chaired back into this urgent care area, looking as if I had just gone through war. T’was grand. I know there was no other option, and it had to be done, but it did have consequences that added to an already very long day.
After what felt like the Spongebob meme (IYKYK), I finally got discharged from this emergency room area. It was at this point that the RN said that after not hearing from my oncologist for a few hours, she then reached out to the Chemo nurse. This is how she got the written CT Scan request. The logical question worth asking is why this RN nurse didn’t reach out to the Chemo nurse earlier when we raised the fact that she heard from my oncologist right away in the morning. But I was too tired to fight. We are heading back to the Chemo wing.
Everyone involved should have known things were going to be bad when we got designated to the same room. From now on, Room Three is a bad omen.
To make the nerves worse, my oncologist schedules a telemedicine visit out of the blue to discuss the new test results. Never a good thing. This is when I get verification that my liver is not progressing, and in some ways, it appears to be regressing. He reiterates that the stomach is getting better, but it’s falling on deaf ears. My oncologist thinks that my liver having more cancerous traits than my previous imaging (which was in late April, before I had even started treatment) is what is causing the main triggers of pain. It has been instigating the “gut punches” I get periodically, and it may be the root cause of my back pain. My liver is expanding, pushing up against things in my body that it shouldn’t, and causing a chain reaction.
So in short, it’s time to take a bit of a more aggressive approach with the liver. Having this telemedicine visit while in the Chemo treatment room meant that I was going to be getting the updated medicine right away, but it also stamped the realizations with a scary sense of urgency. At least in my head.
The same Chemo nurse we had in AM comes back in and explains the new plan. I am going to be getting more drugs pumped into me on the chair, but the silver lining is that I am only going to need one day with the fanny pack at home. But before we can think about going home, we need to test to see how this new drug for my liver is going to treat me. It comes with a verbal warning that it can cause allergic reactions, and our Chemo nurse will stay in the room while it’s being administered to ensure nothing bad happens.
I think you can guess what happened next.
About eight minutes into my chemo treatment (this is around 6 PM I think, was losing track of time), I start to get very warm. I start to sweat. I am having an allergic reaction. The chemo nurse springs into action and disconnects me from the chemo. All of a sudden, the room is filled with five other nurses, and everyone is hustling and bustling. It stressed me the fuck out. They begin injecting me with Benedryl and taking other preventative measures, so for the next 10-20 minutes, I am cooling down and trying to prevent my anxious leg shaking from quaking the entire room.
After I physically and mentally calm down, the Chemo nurse comes in with two options. The first is we continue treatment and hope that the allergy medication they pumped into me prevents another allergic reaction. The second is that we stop treatment and resume tomorrow with a different method of deployment.
I immediately say that I want the treatment today. The fact that I was in this place receiving medical care at 7:50 AM, and now that it’s nearly 7:00 PM…I wasn’t leaving the hospital without getting my Chemo. It was a matter of principle in my mind.
My stubbornness did not win out. The Chemo nurse objectively stated that restarting the following day would be safer. She then got a second opinion from my oncologist, and he agreed. And if it means anything, my companions for the day thought the same as well.
In summation, Thursday, June 13th, resulted in my leaving my home at 7:00 AM and getting home at 8:00 PM, having not gotten any Chemotherapy treatment while also learning that the cancer regarding my liver is worse than it was before. The back pain still exists, and per doctor’s orders, I need to take painkillers I can’t wait for more digestive issues in the near future.
All and all, it was just a terrible, horrible, no good, very bad day.
Now it’s Friday, June 14th. As of me writing this, it’s about 10:30 AM and I am back in the hospital sitting in a Chemotherapy chair. Thankfully we are no longer in Room Three. The new treatment plan today involves me being in this chair for four hours. I also have a doctor’s appointment to deal with my pain issues with a new doctor either during this Chemo treatment, or after it. Who knows? It’s whatever this new doctor can make work.
Today cannot be worse than yesterday. The fact that I am alive and upright is good. I need to remember that overall, I have improved a fuck ton since I was first diagnosed. In all honesty, sometimes it’s really hard.
The best news? I am getting married in 21 days. That is going to happen, no matter what. I may need to shave my head because my new Chemotherapy treatment will lead to massive hair loss, but that is small potatoes.
Unfortunately, my fiancée and I had to cancel our honeymoon to France. The simple reason is that I would not be strong enough to handle it. We have planned a mini-moon to Cape Cod which we splurged the fuck on. Hell, we are renting a nice car just to drive up there. France will come in the future, but it just can’t happen this summer. There are just too many battles happening right now, and the idea of trying to manage my mental and physical health, energy, and dietary/digestive restrictions on foreign soil was proving to be too difficult. I want to be in the best health I can be when Emma and I eventually experience France together for the first time. We will treat ourselves to the highest degree when the time is right.
There is a lot going on. Just a ton.
But you know what could make things a lot better?
A Boston Celtics NBA Championship.
Finish it tonight. Nothing cures problems like your sports team winning a title. It has been too long for the city of Boston.
And listen, I can’t end this blog post without acknowledging that working in the medical field is a heroic thing to do. My Chemo nurse during this whole saga is excellent. I use the present tense because I also have today for my Chemo treatment this morning. She is killing it. I am not going to blame my oncologist for not getting back to the RN in a super timely manner because I have seen how filled his calendar is. It just communication. It’s just that one nurse who wouldn’t acknowledge that somewhere, someone didn’t communicate. I know your job is remarkably hard. It is a heroic job. But everyone, in every occupation, makes mistakes or has bad days. Just admit when it happens.
Stanko Update #1 (May 10, 2024)
Stanko Update #2 (May 30, 2024)
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