There are good days now and bad days. The problem for me is that I am existing on about 40% of the energy level of what I was before, so both good and bad require me to waste so many hours. I spend many hours just sitting, waiting for some horrible pain and discomfort to go away so I can get something done.
I think a lot, and I am at peace. I have made practical plans for my upcoming death, although I hope to not have to use those plans for quite a long time. But, I don't really want to suffer and be totally useless while I am still alive. I would rather be productive.
There are so many things I would like to do, but for whatever reason have never done. I guess you could call it a "bucket list".
So where am I right now?
Well, every time I make progress, there seems to be a setback. The current event is that they have decided to delay treatment until they determine if the spot that they found on my liver is cancerous. They haven't told me what they will do if it is cancerous, but I can imagine that this will affect my clinical treatment. Let me tell you the 3 types of treatment they chose for me:
- Radiation therapy - with the new technology, they can guarantee that I won't contract another form of cancer with it. This makes it much better than the old way. My wife died from being over treated by radiation. They concentrate the radiation on the area they want, and only zap that area. The surrounding area does get small amounts, but not enough to make a difference unless I were to live to be about 140. The treatment takes about 5 to 10 weeks, and is a daily dose with monitoring 5 days a week. The side effects are minimized, but there are still side effects.
- Chemo therapy - Since pancreatic cancer has a nasty habit of coming back, as well as spreading without notice, and radiation is localized, chemo covers the rest of the body. Again, it has been refined to cause as little damage as possible. Suffice it to say that if I wanted to have more kids, I would have to donate sperm before the treatment begins. This is also a fairly long term treatment.
- Clinical trial treatment - They are into "phase 3", which means, they have had success with the treatment (yes, it's still experimental) and have already determined what dosage to use as well as when and how to administer it. Phase 4 is the final stage before it gets submitted for FDA approval. They have had great success with this treatment, with little or no side effects. Tested on 5 people as an example, 4 benefited from it, and the fifth succumbed to the cancer due to their being too far gone already. I volunteered for the treatment and was accepted, but may be dropped depending on the outcome of tomorrows MRI.
They vary treatment based on the data they have as well as their gut feeling, basically an educated guess. My treatment would be a 3-parter, or a sandwich approach. I would start with chemo, switch over to radiation at some point, or it would overlap if they figured I could handle it, and then go back to finish up with chemo.
Since the clinical treatment hasn't been approved yet, it wouldn't be a part of the treatment, but would be incorporated separately during the treatment. There is an indication that the clinical treatment is a cure, but they still have to do the other therapy. It is called a vaccine that strengthens the immune system to fight the cancer on it's own. If it works as they say it does, it will make chemo and radiation therapy obsolete for pancreatic cancer.
So, the waiting game ends probably in two days, since it takes time to process the test results. They did promise speed in the upcoming treatment, but they may also tell me that things have progressed too far and all they can do now is to put me into palliative care. If they decide to do something, it would be to take part of my liver out and hope that I survive. The liver does grow back given time, but with everything else that has happened, I don't know what to expect.
I have gone through this process for only 6 months of my entire 57 years, but it feels as if I have never experienced anything other than this pain and discomfort.
No matter. I would still go through the weight loss surgery again, if I had to. It was so much easier than a Whipple.
My weight has dropped to 186 as of this morning. Food is starting to taste better.I still have to be careful because some of the food going in, doesn't work so well coming out.
I can now drink more crystal lite than before, and like tea again. Coffee works too in moderation.
My vitamin intake has suffered but I was told not to worry too much. I still try to get my calcium, iron, and multivitamins on a regular basis.
Stay tuned.
