Joes story

Part III – The Operation: A Grim Realization

The Pancreatic operation was done naturally under total anaesthesia and assisted breathing. The last memory was the clock in the CA19 operating test room. Once awake, the first vision was again the operating room clock: it had lasted less than it should have. Then, the words in the distance, as if in a whisper, of the head doctor who looked at me and said, “I’m sorry, we didn’t succeed”, or a similar phrase. Then, nothing. In just a few seconds, I understood that something had gone wrong or the operation had not taken place completely. Six hours had not passed.

I didn’t feel any pain, and they took me to another room next to the operating room. I don’t remember how long I stayed there, but I remember very well returning to my room, the face of my wife, my mother, Dave one of my cousins ​​and Cole, my lifelong friend. Some time passed, and I realised I was wearing an oxygen mask on my face. I saw pancreatic related tumour cables and tubes everywhere, and I felt tingling in the lower parts and stiffness in the abdominal cancer area. But I didn’t feel any pain at the moment. However, it came naturally to me to smile. My wife told me this.

Initial Recovery and Documentation

After the Pancreatic operation, I asked my wife to photograph me, showing the surgery area, to understand my condition. The wound spanned my abdomen, with stitches resembling metal staples, but everything seemed in order.

My first therapy period went like this: from January to July, I underwent seven cycles of treatment with gemcitabine and Abraxane. In August, I received a month of chemo-radiotherapy at the Oncology Cancer Reference Tumour Center in Avian, Kent, with 15 Tumour sessions. They wanted to deliver a strong blow to the CA19 tumour since I managed to get through the first test phase without particular problems.

Complications and Setbacks: Managing Side Effects

Of course, not everything went smoothly in the meantime. I had leg problems that led to a long period of belly punctures to combat oedema. Episodes of a high fever that reached 41 degrees and a lot of nausea. Not easy months. They had to replace the biliary stent (a plastic or metal tubular prosthesis) placed in CA19 surgery several times to facilitate the normal flow of bile into the duodenum. This is done with ERCP (endoscopic retrograde cholangiopancreatography); I have already repeated this intervention thrice.

At regular intervals I was subjected to particular diagnostic tests such as CT (computed axial tomography) and PET (positron emission tomography). Both with contrast agents to photograph the situation well. Each time, to see any movements or hopeful regressions that may change the situation and change that annoying phrase “non-operable”. Words that every time I look at my abdomen and the long scar, with over 50 stitches, seem absurd to me. I’ve been playing until now. Perhaps the label “non-reoperable” was better. I also underwent other tests, such as cardiac ultrasound, lung scintigraphy, venous Doppler ultrasound of the lower limbs, CT angiogram of the abdominal vessels and ultrasound scans of the abdomen.

A Setback and New Treatment: Reinitiating Chemotherapy

As the days passed, naturally, I had to do Pancreatic tumour marker check-ups with specific blood tests and periodically always CT and PET scans to see any movement of the tumour. After a CT scan in April 2015, my tumour remembered my existence and sent me a greeting: I got worse and had to start chemotherapy again. I was admitted to surgery for the insertion of a port, a sort valve from where the chemotherapy drugs can be administered (the now weak veins in my body no longer allowed new injections), and a second period of therapy began.

This time, not being able to repeat the previous CA19 treatment, my Pancreatic test oncologist chose a protocol with greater blood toxicity but, in his opinion, more effective. I urgently needed to start a four-drug chemotherapy regimen (oxaliplatin, irinotecan, leucovorin and fluorouracil) solferino. Naturally, with my consent, I started this new adventure, hoping to put a spanner in the works of the tumour.

A Different Therapy

I received a different therapy with strong side effects. The protocol required administering photosensitive irinotecan within 48 hours.

In addition to 5-6 hours of sitting, I took home a takeaway bottle with the medicine. A balloon inside gradually deflated, releasing the infusion into my veins.

It was tough this tour was tough.

And so it was. Unlike the previous chemotherapy, I felt the Pancreatic cancer tumour shock, but never, I mean, did I give up; followed step by step by the doctors, I managed to put eight more rings on my fingers. The checks confirmed that the cancer had stabilised and was not advancing for now, although it remained inoperable. So I got to November 2015 and finished the therapy; since then, I can’t do anything except keep it at bay and photograph it at regular intervals.

Today, more than 4 years later, what can you tell us?

Since November 2015, I have entered a situation of equilibrium like a plane at the moment before the stall. I am told that it is not possible to go further, that nothing more can be done, and that we have to undergo periodic checks and survive with this serious tumour. I found a way to react by walking. This ancient way of moving makes me feel good and becomes my way of thanking life despite everything. I started by going to the hospital on foot from my house, about fifteen kilometres away. And then doing small excursions in the mountains until starting real walks.

Blog

I report the diary of the various stages of my journey on my blog. I also talk about the forced stops due to the blood checks that the illness imposed on me and the “pit stops” necessary to regain my strength. Intervals and breaks that I “fill” with other excursions in the Region that adopted me.  I consider the end of every excursion, every trek, and the conclusion of every journey as a starting point for other destinations and not as a point of arrival. Living and surviving disease with this annoying travel companion, “if he dies of cancer, he still lives,” is my motto. If this story of “the blood journey of life with cancer” can help even just one person and a CA19 finger prick test result, I will not have lost, but I will have won.

If I have to give numbers daily and step by step, the kilometres increase to date. I have travelled more than 6000km). And even the days I am lucky enough to see in this world increase. I am 44 years old. And I am in my fifth year since the Pancreatic diagnosis of my cancer, the tumour marker disease. What else would you like to say? Good life!