Th÷ CA 19-9 test results have gotten worse but there is a nerve block procedure that may enable me to try a different chemo coctail so that’s the new plan. Both the doctors at Bert Fish and The Moffitt Center independently suggested the same plan. Sounds good to me.
Had a “succesful” chemo today. The usual discomfort came with the second drug but a shot in the arm helped clear that up. Resting on the couch dining on Boost and Saltines with jelly. The doctor upgraded my 150 mg worth of Fentanyl every 72 hours patches to 200 mg worth every 72 hours so maybe I’ll get some additional relief. Just started the new routine at 6:00 PM. I return the drug pump on Wednesday afternoon and hope to get my latest CA 19-9 tumor marker results then.
In the meantime, things continue as usual. The hall ceiling fixture cover crashed to the floor missing Josef by a about a foot. Also for reasons I can’t look into now the remaining fixture will not light. The pool leak seems to returned and now both toilet seats have start to come lose time to time (one on each bowl guys. This isn’t Trump Towers.)
We just walked in the door from our visit to the Moffitt Cancer Center. A1A Ocean Limo was great. Gloria was incredibly accommodating in making arrangements and David was on time and was a professional a driver as one could want. Understanding our special needs, they provided a van with two bucket seats and three full row bench seats allowing Henry, Jen, Marybeth, and Josef room plenty of room to stretch out. There was even a a bench seat that allowed me to stretch out and sleep the entire drive with a pillow and a sheet. Apparently Folfirinox makes one sleepy There was also plenty of room for our luggage and my new wheels,
We met our Doctor the next morning. It was comforting that both doctors agreed on Folfirinox as the best treatment for pancreatic cancer. However each doctor also seemed to feel that my incomplete treatments to date may have skewed the results in indicating my progress. Fortunately, it appears that each doctor has the same ideas as to what to try try next.
One of the test results that both my doctors had seen was the initial January CA 19-9 tumor marker of 86,000. When I phoned Bert Fish today to ask the the CA 19-9 be included in my future blood tests, I got a surprise that it increased on 3/4 to 618,013. Now this is daunting since it is such a large increase from 86,000 but since 3/4, I have completed a full blown successful Folfirinox treatment on Monday 3/7/2106. It could be nothing. I just left this latest number with the Moffitt Center. Let’s see how it it goes.
As usual, thank you all for your help, support, prayers and wishes..
Chemo #3 Flofirinox was delivered on Monday 3/7/2016 via my new port. It connects to my femoral artery via a port in my groin. I’m squeamish (or it Screamish) that the port is located so close to some of my favorite body parts but it’s funny how quickly one can adjust in a life threatening situation. Today Marybeth delivered my daily Lovenox (blood thinner shot.) Her first time at bat and she hit it out of the park. I know she found it harder to deliver than I did to receive it so I love her even more than before. I didn’t think that was even possible.
I’ve got a CT Scan here tomorrow Bert Fish, Then on March 15 we’re off to the Lee Moffitt Center in Tampa for a second opinion. So far so good with this last chemo round.
Henry and Jen found us a nice place to stay in Tampa and even located a 12 passenger van (with full bench seats suitable for napping).
I’d also like to thank every one for all of their kind birthday wishes.
Since I recovered from my low white blood count (WBC), I was ready to begin my second dose of chemo. I arrived at my oncologist’s appointment on Monday 2/22/16 expecting to start chemo on Tuesday. When I told the doctor that since Saturday night I had pain in my right side whenever I took a deep breath, he responded by telling me my chemo would start now and I could decrease the time between one of my pain meds if needed. I took that to mean that the pain was likely due to tumor growth.
So now, the race is on. Will the tumor advance faster than the chemo can kill it? It’s like a SCI FI movie. The ship is being pulled into the sun. Will the engines be able to pull the ship to safety before the engines pull the ship apart themselves?
Of course. I made the mistake of assuming this would be a fair fight. I have an Infusaport installed in my right upper chest that leads into my jugular vein. The nurse plugs a tube carrying chemo medicine into the port. Then I wait about 5 hours in one of 10 recliners in a room filled with other chemo recipients. At the end of he day, the nurse plugs in a portable pump, puts it in a fanny pack and sends me home for another 42 hours of dosing.
Not this time. When the nurse starts to prepare the port for use, she sees no blood in the return. It could be a problem with the port allowing flow in only one direction. Not too bad as it only needs to be ale to acept input. Output from the port is not needed so we start. As I’m receiving my meds via the port, I notice my shirt is wet. Turns out I’m leaking from the hole created by the pin when the nurse first inserted the tube into the port. Always resourceful, the nurse finds a vein and administers the rest of the day’s treatment, all but the 42 hour dose that requires the pump. Today Tuesday, 2/23 instead of wearing my pump I’m off to radiology to run a dye study on the port. I don’t know what today will bring but I like their optimism. They already scheduled me to come back on Wednesday to pick up the pump. So far so good on the side effects from this second go round.
My next oncology appointment is March 7, 2016 and presumably I’ll start another round of chemo. When I asked how long will it take before we can learn if the chemo is working, the doctor indicated a month or more. So I’m settling in. I’m learning to deal with the impact of the cancer and the chemo side effects and looking forward to doing as much chemo I can as soon as I can. In the meantime, I’m going to have as many Bill Eddy moments as I can.
Thank you all for your support.
Neutropenia? Is that like pinot grigio? Pinot Noir? No such luck. Neutropenia is a condition where you have an insufficient number of white blood cells needed to fight infection. The indicator is a temperature of 100.5, so when my temperature hit 100.8 on Saturday 2/13, it was off to the ER for me. I’d never been to any ER before and dreaded it. Turns out it was easy peasy. I had to wait about two minutes for them to finish with the guy ahead of me. They sat me down, did some paperwork and had me in a private room in a matter of minutes. I wondered about the private room. Was my insurance coverage over the top? Did the nurses already know how well I won over strangers? No, due to the neutropenia, I needed to be in isolation. Masks and gowns for all staff and visitors for four days while they pumped me full of every antibiotic variety they could find in the pharmacy.
The white blood count came back up but in the meantime, we learned that due to my liver damage I do not respond properly to coumadin. Instead we’re using Loveinox injections to my belly to control my blood clotting.When we discussed it with my doctor, I told him my daughter, Jennifer, would inject me. He looked at Jen, looked back at me and said, “You better be nice to your daughter.” I told him, “Too late now.”
So today I go to the oncology office so they can draw blood for a baseline prior to starting my second chemo treatment on Tuesday. The symptoms from the last chemo session seem gone. I’m only experiencing the fatigue, sweating and the abdominal pain that I had prior to chemo. I’m ready to go again but I could’t be without the support of my family and friends. I want to thank you all for thinking of me. Marybeth and I especially want to thank Jennifer, Henry and Josef for putting their personal lives on hold so they can move in with us in New Smyrna Beach. If it wasn’t for Jen, I don’t know how I’d manage the self injection of the Loveinox.
The biopsy confirmed Stage IV pancreatic cancer which had metastasized to my liver and I just completed my first 5 hour chemo treatment at the hospital infusion center. So far, so good. Except for sweating, I had nothing to complain about. I also learned today that if you want to increase your social appeal by sweating, farting, going bald and looking pale, nothing does it like cancer.
Now, another 44 hours at home or and about (I’ll be home) while wearing a drug pump in a fanny pack day and night. Even the fanny pack isn’t too bad. It’s black. It’s rectangular and could pass for a small camera case. Then Thursday afternoon, I go back and have the pump removed.
Next chemo is on “day 15.” Also coming up is a 2/15 FU (Follow Up) with my oncologist while we wait to hear when I’ll be admitted to MD Anderson in Houston.
Some of you have been lucky enough to have known Bill Eddy. Due to a youthful accident, Bill needed to use a wheelchair to get around. He had to use two hands to drink from a soda can but boy, was he funny and a joy to be around. I’d often talk to Mr. Bill on my ham radio and whenever he knew my wife, Marybeth, was listening, he’d yell, “Let’s go Mets.” He was thoughtful enough to not only know what was important to me, he knew what was important to those I cared about.
When Mr. Bill and Marybeth finally had a chance to meet in person, she shyly introduced herself, “I’m Mark’s wife.” Mr. Bill looked up at her and said, “Mark who?” Classic Mr. Bill.
When his driving privileges were restored, he was ecstatic. He told me, “When I’m driving, I don’t feel handicapped.” Mr. Bill taught us that no matter what else may be going on in our lives, there would be good times among the bad and we’d be fools not to enjoy them when we can. Marybeth and I call these Bill Eddy moments.
Tonight, we had a nice comfortable dinner at home. Thank you, Mr. Bill for helping us enjoy it.
Years ago, a coworker had a sign in his cubicle. It read, “No one gets out of this world alive.” Of course, the sign told the truth. We all come to an end sooner or later. The only question remaining is, “When?”
This week I got one step closer to the answer. A CT scan indicated pancreatic cancer which has metastasized to my liver. It’s incurable and the life expectancy for patients with untreated Stage IV pancreatic cancer is measured in months.
When I was a kid, we’d pass time on occasion asking each other, “What would you do if…?” One topic was, “What would you do if you won a billion dollars?” I didn’t have an answer for that one.
Another topic was “What would you do if you had only (fill in the blank) months to live?” Well, at least I now know the answer to that one. I’m going to hold my family and friends close and I’m going to get the best damn medical care I can.
Right now, I’m waiting for the results of a liver biopsy while I also wait for one of the best cancer hospitals in the nation to complete gathering my records so they can assign me an admissions date.
Tom Petty was right. The waiting is the hardest part.