Note: This blog has sat unfinished for over 6 months. I have had an overwhelming case of writer’s block. I still do. But, I decided tonight I would finally finish it. As always, these are just my thoughts, although very delayed. Your experiences with NET cancer, treatments, and treatment centers may be different.
If you watch any Science Fiction/Fantasy series long enough they will eventually have a Time Loop type episode. Think about it. Almost every Sci Fi shows in the past 30 years have had one. Stargate SG-1 did one of the best time loop episodes I’ve seen (https://en.wikipedia.org/wiki/Window_of_Opportunity_%28Stargate_SG-1%29 ). I just love watching O’Neil teeing off in front of the open Stargate. Classic TV! What’s your favorite time loop episode or movie?
Why do we love time loops? I think it’s a desire to work out a problem until we get it right without the constraints of time. The concept that we can keep trying until we get it right and then pick right back up where we left off originally.
Every 28 days I feel like I’m in my own time loop episode.
It begins like every other day. I get up and go to work. Then at 4:30 I walk across the street to the hospital for my 5PM appointment to have a Sandostatin LAR injection. Sandostatin is a drug that helps control the hormaone production of the NETs that have metastasized to my liver. Without the injection, I experience frequent flushing and other symptoms. Supposedly, Sandostatin can also slow the growth of the tumors. I can’t argue with that. Since I started Sandostatin in 2015, all the tumors continue to register as stable. That is time loop part 2.
Did you catch the part where I get the injection across the street from my office? My NET specialists are in a cancer center 45 miles away. So, I asked if I could have my injections done closer to home. The closest location happens to also be right next to my job. Cool huh? Well, mostly. I’m sure, until they met me, they had never administered a Sandostatin LAR injection. I continue to be the only NET patient they see.
At 4:30 PM I walk across the street to the hospital and sign in. Since I’m there every 28 days, I rarely come twice in the same month. Which means I’m a new patient. Thus, I must register each time and each time it is the same process. Are you Jeremy…? Do you live at…? Are you married to…? What are you here for? What’s that? You have what? Who’s your doctor? Then there’s the discussion about how to code it. Then they try to convince me to pay up front and save 30%. To which I explain that I already met my deducible. I sign a form and waive the option to pay now.
I understand this happening in January on my first visit of the year. But, it happens every time. Which is ridiculous. I’m on a High Deductible insurance plan which pays everything with no co-pays after the initial $2500 out of pocket. Given that the first shot of the year is about $12,000, there no point in trying to get me to pay it and save 30%. It would still be more than my deductible! Just bill me and let’s move on.
OK, now it’s 5PM and, if I’m fortunate, I’m on my way to get my injection. The area that they do this is in a Surgery Recovery area. So, I’m in an area with other people who are just getting out of surgery, or having other treatments. I always feel a little silly coming here to get a shot. However, the nurses there are very nice and they assign me a room or chair area. Before I go further, I will say that over the past 2-3 months it has gotten better. But, for the first year, it honestly was as if I had walked in there for the first time every time. What are you here for? What’s that? Is it an IV? You have what? Plus, there’s the wait for the injection kit to arrive. Oh my! Sometimes after 45 minutes or more they would tell me that they had to get one from another hospital and I need to wait for it to be delivered. This has gotten better too. Now they order it as soon as I register.
After about 45 minutes and a blood pressure, blood oxygen, and temperature check, I get my injection. It’s kind of like a box of chocolates. I’m never sure what I’m going to get. Did it get mixed right? Did it get warmed up enough? I have no idea. There have been a few times I’m sure it was done wrong. I would suffer all month with symptoms or get a painful lump in my hip. That’s usually when my wife tries to convince me to go to the cancer center instead. Is the 2 hours of driving worth it? Not for me,…yet. I like my walk across the street. Gradually, I’m giving the nurses enough practice that they are starting to get it right each time. Also, I’ve learned to speak up. I’m now much more vocal about my concerns with the mixture, temperature, and time needed to allow the mixture to absorb. We are more of a team now. At least, I think so.
With the Band-Aid secured, I’m cleared to pull my pants up and given my appointment for 28 days later. In 28 days, it will all repeat again. But, that’s not all, folks.
If you have NETs then you are very familiar with the second phase of the time loop. NETs are funny little things. They usually grow very slowly or with the right reaction to some treatments they may shrink, until eventually they don’t. Thus, we need to be closely monitored to address any changes and adjustments needed in treatment options. The routine I’m on now is every 6 months I see my NET specialist. Along with this visit, I have a MRI and sometimes a CT scan. The day goes like this….
Wake up extra early. Since my first appointment is to have a MRI, I have to remain hungry and thirsty (and without COFFEE!) as I drive 45 miles to the hospital.
While still without coffee I need to fill out paperwork. The same paperwork I fill out every 6 months. Why, oh, why can’t they electronically store these things and just ask me if there have been any changes. I’m taken back and put on my paper clothes. Inside the MRI machine I’m restrained and listen to what may or may not be the station I requested as the MRI does its thing for 40 minutes. I’ve actually started remembering the sequence of the MRI. I can just about sing it.
Then I wait around until I go to my doctor. At the doctor’s office, we go through the same routine every time. It doesn’t matter what answers I give, it’s all the same results. What if I did fall in the past 6 months? What would they do now? How’s my pain level? Well, maybe I’m a 1 today, but last week I was a 7. Doesn’t matter now.
Now they send me off to sit in a little room. Before they do, though, they weigh me just to make sure I know I’m getting fatter. My nurse comes in. She knows me now and we get along great. She asks me all the questions that she is supposed to ask every time and then I wait for my doctor to come.
For the past 3 years it’s been the same. I’m stable. The MRI report looks almost like a carbon copy of the last one. All the little tumors in my liver are content being the size they are. They haven’t multiplied or spread to other areas of the body. I’m reassured that I’m in good shape. Then I’m scheduled for the next MRI in 6 months when this cycle repeats again.
I’ve been thinking about skipping a turn. What if I waited a year or more before the next scan? But, then I think, “Why do that?”. I like knowing what’s going on. It’s repetitive, that is true. But, right now my insurance covers it. So, while I can, I want to know even if the answer is the same each time.
NET cancer is not currently curable. Thus, it won’t always be the same each time. Eventually, the MRIs will change between visits. At some point, the treatments will need to change. I suppose there will be a time in the future when I will wish for the time loopy, repetitive cycle I’m in now.
In a Time Loop episode, the main character often discovers more than the solution to the problem, but also a deeper understanding of himself and the world around him. After spending countless repetitions of the same day, they come out a better person. So, hopefully that’s the way I will manage this cycle of my life as I sit back and let it repeat as often as it likes.
NOTE: If you are finding this blog while searching for information on Neuroendocrine Cancer, I hope you find my experiences useful and/or entertaining. But, my goal is to give a personal story and not any medical direction. Please go to http://www.carcinoid.org for a lot of excellent information and resources for new patients, caregivers and doctors.