I am not a medical professional or a writer. I am just trying to tell a story as best I can in the hope that it helps anyone with cancer.
When I Realized Something Was Wrong With My Body
Well, it all started out with me thinking it was just a stomach issue that would go away. I didn’t pay attention to my body for over seven months but after losing 70 pounds and not getting any better—along with a daily reminder from everyone in my life that something was wrong—I gave in and decided to find out what was wrong.
In my mind, seeing a GI doctor seemed like the place to start, so I picked a name off my insurance website. I was still working full time at this point and had a $7000 deductible. I didn't worry about the cost at this point.
I got my first appointment set and waited for the date and time; little did I know at this time that the first week would be a series of events. If I didn’t have the support from the people in my life, I would have walked away and never sought treatment.
My First-Week Experience
Day one started with quickly scheduling a colonoscopy and endoscopy for that week and some minor blood work. I wasn't too worried at this point, so we headed home to enjoy a relaxing night before I head off to work at 4 am. At 8 pm my cell goes off from the doctor's office; now I know they don’t work late so what can it be?
The on-call doctor just got my blood work and tells me I have to go to the hospital and get emergency IVs for potassium and magnesium since the levels in my system are really low, and I could die. So, after like four questions without satisfying answers, my loved one talked me into going. A big cause of this—and not covered yet —is the main symptom of my cancer was chronic diarrhea, so nothing was staying in my system.
I arrive at the hospital and begin the waiting game—in total, I was there for over eight hours. They bring me back and start the IVs; these were the worst pain I had gone through in a while since every bag burned as it started and ended. In total, it was three bags of potassium and two of magnesium. Now, remember we're still on day one.
After this mess, the numbers in the blood work stay the same for the next few days, then drop again. Any guess what they wanted me to do again? Yes, still being stupid, I fell for it again; at least this time I got a doctor that had a clue as to what he was doing. He was also the doctor in charge of that ER section, and we discussed the bad treatment the last time and how I did not want to come back.
It's time for IVs round two; this time they used some other fluids with the potassium and magnesium to make it not burn—wow what a great idea. After eight more hours, I have more blood work and head home. Surprise, same results. I decide at this point that I’m done with the IV route, and the two trips to the ER pushed me over my $7000 deductible.
Within the same week of the IVs, I get tests done with a rush on the results and a visit with the GI doctor in two days. The testing went ok; I guess I was out of it and don’t remember much except the doctor had the bedside manner of a rock. This turned out to be an issue real soon.
Finding out My Diagnosis
It's time for the doctor's visit with a doctor who believed they were God. I am so glad my girlfriend and my sister, a retired nurse, came with me because what I got out of it and what they got out of it were totally different.
I left the office thinking I had some issues in my intestines that I needed to get some scans for and then get a surgeon to look over the scans and tell me all is well. Well, the women In my life actually heard the words carcinogenic tumors and realized it was not good.
So, the doctor with a really bad attitude was kicked to the curb. I never visited him again, and the next phase begins.
Scans and the Cancer Surgeon
Back to the hospital; the scans go fast and the doctor's appointment is set up quickly. This surgeon was one of the nicest I’ve seen—only got to see him the one time— and he read the scans and nicely explained to me that the carcinoid tumors were so spread out in the intestines that there was no one place for him to operate, so surgery wasn't currently an option.
The surgeon excused himself stepped out of the room and called the best cancer doctor in the area and got me an appointment for the next day. It is so great when you find a doctor who cares more about the patient then themselves, During this journey, I hope to find a few that restore your faith in humanity. He also suggested I get a primary care doctor to manage everything. I really had no idea what this meant.
Setting up My Long-Term Cancer Treatment Team
I find a primary care doctor in my area, and it turns out to be a nurse practitioner who happens to be one of the nicest and most patient people on the planet. In our first visit—and after only five minutes—she explains why the IVs did not work and how we can fix that. If the chronic diarrhea was not addressed, the minerals would just keep flowing out of my body. So, we started treating the diarrhea and got me on potassium and magnesium pills and weekly blood work to monitor the progress. To this day, we have it under control.
I start the visits with my cancer doctor, and we develop a treatment plan. At this point, the cancer is in late stage one. We start the treatment plan of a chemotherapy depot shot every 28 days, and a chemo pill called Afinitor every night. This treatment lasted over four months until the cancer moved to stage two, and the treatments were determined not to be working.
I want to mention how easy it is to become a tad upset with the drug companies when you get your first notice from the insurance provider and find out the pills for a 28-day supply cost over $32,000 and the shot over $15,000. It is easy to believe there is more money in treating cancer than curing it.
The Next Part of the Cancer Journey
The next article I write will be the progression from stage one to two, and the new treatments as well as the new things that are happening to my body.
I really hope this can help someone in any way. If you have any questions or would like me to cover a specific topic, I will do my best. My plan so far is to cover these things until I can think of more.
- The progression from stage one to stage-two cancer
- How to deal with treatments suddenly not working
- Navigating through SSDI and SSI and medical coverage
- Remaining positive when it seems like everything around you is not going well
- Remembering that every day is a gift and that it's important to tell those in your life what they mean to you
- Chemotherapy and special precautions you need to take to protect those you love
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2019 Greg Mulac