Cancer and chemotherapy

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Time for a health check / update here.

TL;DR

They found something blocking my bile duct that they think is cancer. After battling acute pancreatitis in the autumn I was to undergo a Whipple surgery in January, during which they found that they can't do that. As the tumor i too locally advanced, meaning that it has grown in to stuff in my case one of the main veins and arteries going to the liver.
So I am back on chemotherapy after a year without. I decided to start a VLOG on YouTube about it if you are interested in following me on the journey. If not, up to you. : )

How it started this time

Last June (2019) I got severe stomach ache and had to go to the ER one day before a planned adventure biking trip. At first they thought that it was bile stones, but nothing showed on CT-scans.  On MRI-scan where they did not see any stones but they saw that the bile duct was blocked by something.

Potato quality photo of MRI showing part of bile duct is blocked by unknown mass.Should be white between the red lines.

At this point the talk starts about cancer. Again. In 2018 I was operated twice for bile duct cancer and they ended up removing half of my liver. Followed by a six month chemotherapy with pills. Doctors at my local hospital told me that there would be another surgery to remove this unknown mass and that they would coordinate with the pancreas team in Gothenburg, Sahlgrenska.

Hence began the waiting game.

23rd of June 2019. Still weighing in at 101. 2.5 kg down since ER.

During the coming weeks I did some more MRI-scans as the Pancreas team wanted some more pictures I guess. On July 12th I received the call that I was scheduled for a Whipple surgery and that I should go to Gothenburg and meet with the doctors there. At this point my eyes and skin have started showing a little yellow tint.

14th of July 2019, 98.5 kg. Continuing downward.

We meet with the doctors the coming week and they say that it is a 6 week queue, they also describe the surgery and that it is a major one that will rewire some of my internal organs. At this point it is evident that I am yellow. And I am itching all over my body.
I receive a date for mid August for the Whipple operation.

Acute Pancreatitis

31st of July 2019, unknown weight, probably less then before.

On the 31st of July I had to call the doctors and say that I needed to come in. I couldn't cope with the itching and I was turning really yellow now and also I felt that my body really wasn't picking up any energy from food anymore. They called back and told me to come in, I was scheduled for a surgery the next day for opening up my bile duct.

At this point you might wonder why didn't they do that from the beginning. Open up the bile duct that was blocked with the help of a plastic pipe. That's what I wondered. During the next few days the yellow vanished and itching stopped and everything got better. Until it didn't.
It turns out that there is a ~5% risk of getting acute pancreatitis with this procedure. And that is what I got.

16th of August 2019, 98 kg

At 10th of August I was up to 106 kg. But this time with fluid building up. They fixed that with diuretic medicine to get rid of the excess fluids. And on Wednesday 21st I weigh in at 93 kg. They cut my antibiotics and sent me home (twice that week).

23rd of August, 93 kg. Happy to be home

On 24th I got back in ER and I was in a really bad shape. It hurt everywhere and I received a ton of painkillers.

28th of August 2019, CRP at 338. This is quite high....

The next week I do not remember anything of, I received painkillers intravenously and deteriorated.

1st of September 2019, High fever, 105 kg

On 2nd of September I was sent to the Intensive Care Unit due to signs of bleeding in the cyst that had formed around my pancreas. I received the first painkiller that actually helped in the form of a spinal anesthesia. I weighed 109 kg


The next evening, on the 3rd after a month at the hospital. I was sent to Gothenburg with ambulance for specialist care.

4th of September, 2019. High on medicine and receiving blood. I did not log any weight during September.

During September I don't remember much, other then the low fluid intake scheme that was in place during the first week. I.e. was not allowed to drink more then 500 ml per day. That was hell.

10th of September 2019. Upper body does not show any extra weight, more like less weight. But stomach and legs were just huge. Regret that I don't have any photo of my legs.

After a couple of weeks in Gothenburg they put in a pipe from my stomach to the cyst around my pancreas to start shrinking it. And I think that was the turning point of sorts, even though I continued to have fevers for a while everyday and fever chills. Longest was 3 hours of uncontrollable fever chills.

22nd of September, another fever night with no sleep

Turns out I didn't record any weight changes during October either. Must have had other things on my mind. But I think I peaked out at 117.5 kg. Last weight without extra fluids was 83 kg. So 24.5 kg of extra fluids in my body. My legs were like tree-trunks and I had a really hard time walking.

When they finally managed to get me to loose the fluids, (daily process that really went on from day one in Gothenburg). I landed at 80 kg. So 37.5 kg loss from the max weight during this time. I have flames as proof.

2nd of October, got help with washing my hair.

5th of October, first time with a chair bike.

First weeks of October I started to be able to walk a little longer, i.e. not just the corridor outside my room but to other parts of the hospital. Just leaving the surgical department was nice as I've been there for so long at this point. But always with a nurse as damn, can't trust my legs.

October was up and down, when bloods started going the correct way my body decided it was time to go on strike. During September all the lab values were skyrocketing but my body was like, I'm fine.
A lot of nausea, vomiting and finally unable both eat and drink. In the end I think that it was my brain, it wanted to get away. The only medicine that helped against the nausea was a pill against worrying. I.e. one that calmed my brain. When that week was over, or was it 2? Can't remember, they sent me back to my local hospital.

25th of October, feeling OK. Hoping to get closer to home in the next week.

2 months in Gothenburg.

I spent the better part of November at the hospital in Skövde. At the end I only needed to go in for antibiotics (that I've been on since August) and was able to sleep at home. That was a huge relief. Three months, three and a half month in a hospital really takes its toll mentally.

7th of November, up and walking with no help

In the end of November they removed the pipe from my stomach to the cyst that had emptied itself successfully.

19th of November, home at last, 82 kg

I was switched over to antibiotics in pill form but when they ended it took two days until I was back at the ER. Totally crashing.
A few day at the hospital again and back home with new antibiotic pills.
After they ended it took a week, the week before Christmas until I crashed again. The doctors said that I was to be on antibiotics until the Whipple surgery was done, so I was allowed home during the day on Christmas, but New Years Eve I spent at the hospital, if I remember correctly I switched rooms when the bell rang due to faulty ventilation.

The Whipple Surgery

On 8th of January 2020 I they did the Whipple surgery in Gothenburg. Or, well they started to do it. But turns out that they were not able to remove the tumor. And thus did not perform the Whipple at all.
Evidently, if they would have tried to forcibly remove it the risk would have been very high that they could have nicked one of the main arteries going into the liver and I would have died there and then. Fun stuff.
I was a little suspicious when I arrived at Post-Op hours before estimated but as I was high on medicine I didn't pay that much of attention.

The next day, still at Post-Op, the operator that performed the surgery came to visit and told me the news. They were not able to remove it and they could not do anything more surgically.
When I got back to my room he visited again, this time when my wife and sister were present. And pretty much told us that better plan for the worst, there is a miracle chance that it might be operable after a chemo treatment but that the chances are close to none. So basically, I will die of this.
They had also switched the plastic pipe to a metal one in my bile duct, hopefully removing the need for antibiotics as the doctors thought that the plastic pipe might be the source.

12th of January, 2020. After failed Whipple surgery

I was sent back to Skövde for recovery and to start chemotherapy.

23rd of January 2020. New glasses

In the weeks to come after the surgery not much happened, I got the flu, my oncology doctor got the flu. Time passed, but then again I could not start the chemo before my surgical wound was healed so I guess it did not matter.

Chemotherapy

This is where we are now. Started chemo a week ago (7th of February) and received my second treatment yesterday.
My oncology doctor says that there is a real chance that chemotherapy should work. He was a little baffled at how the operating surgeon had presented the chances. So that is what I will focus on from here on. That there is a chance, and 3 months of chemo will be pain but At least then we know if it has effect or not.
At this point I've also started a VLOG, if you are interested in following it please head over to youtube! I don't know if I will write more about it on this blog though so the VLOG is where I will update on that subject. And the occasional Instagram photo of course.