Realism vs. Optimism

A few weeks ago I wrote about optimism vs. realism. After actually reading my CT scan report, I think I also need to look at things from this perspective as well. We had looked at the scan while the doc read some of the notes. When I read it myself it doesn't sound as rosy. There were lots of uses of the words 'bigger, more, new, increased, spread', etc.

Sometimes I may gloss over how things really are and how I present them to people. Today you get the true version of JRz pancreatic cancer (pancan). I'll try not to get too graphic, but give you the gist of it.

I've lost >60 lbs in less than a year. Not just the unattractive fat, but the muscle as well. I have loose skin hanging from my upper arms, thighs, and stomach. If I was healthy, I'd be all over getting a full body lift and makeover. But... Also, I have no padding anymore. Sitting on hard furniture is really uncomfortable. I can, tho, cross my legs and have the leg on top touch the floor and sometimes wrap behind the other leg. That's a new one for me.

My abdomen is distended. I look like I'm pregnant. Tomorrow I will have some fluid removed. I can't wait. I constantly feel like I've just eaten three turkey dinners and feel slightly nauseated. It's very uncomfortable. I'm hungry and I just can't eat enough, and I know that's not good. Hopefully I'll be able to eat again and maybe gain a little weight back.

I probably usually look better than I feel. I sleep on average (between night and nap) about 12 hours per day. I'm not full of energy, altho I try to summon, save, or build up energy for the things I want or need to do. That's pretty invisible to most people.

Being on a narcotic wreaks havoc with my bowels. I go from constipation with cramping, bleeding, and pain to the other extreme of gas and diarrhea. Can't quite seem to find the balance. I'm really hoping getting the abdominal fluid removed will help.

Chemo brain is the least physical, but it's a scary thing to deal with. I can't focus well, have a hard time working on one task for any period of time, and of course have memory problems. It's just flat out disturbing, since I remember the person I used to be who could juggle several things at once.

I just feel weak. I used to be strong, and even tho overweight, in some semblance of reasonable shape. I surprise myself sometimes, by how much of that strength is gone. It worries me.

I'm happy that I haven't had to spend a night in a hospital, have surgery, or have radiation. I'm not saying the good outweighs the bad. I am always aware that things could be worse than they are.

Thanks again for your prayers, positive thoughts, support, and help with some of the more mundane tasks of life. You all are inspiration in the fight forward. xo

A Glimpse Into Alzheimers?

Last week while I was playing pool, something happened. My opponent scratched on her shot, so it was my 'ball in hand' to put anywhere on the table. I saw that I needed a bridge to get at my target ball, so put the cue ball at the end of the table to get the bridge. When I stood up, I saw that the cue ball was at the other end of the table from my target ball, and got confused as to why I would need a bridge. What was I thinking? I put the bridge back and made the shot. Then I realized that it had been my 'ball in hand' and that I was going to move the ball closer to my target ball and then use the bridge to shoot. I was shocked by the mistake I had just made. A few minutes later I realized that I had missed my afternoon pain killer and was pretty uncomfortable. Plus the confusion over what I had just done, was very disconcerting.

I'm not saying that I have Alzheimers, but I think I got a glimpse of what it is like to momentarily have forgotten what I was doing. Once I took a pain pill and it kicked in, I was able to focus better.

This wasn't like we all forget why we got up from the couch, went into the other room. It was disturbing to know that I could completely 'lose my place' doing something I've done before.

I can't imagine how horrifying it must be for people who have the disease and how devasting to their families and friends who have to watch their loved ones slowly become someone else.

Not the Greatest News, but It Certainly Could Be Worse

I think Michael and I got through the waiting period fairly well this time. No major blowups, nice pretty even keel interactions.

We looked at the last scan today. There is no horrible news like my lungs are full of tumors now, or things have quadrupled in size. There has been growth. Not a whole lot of it is new, but some things have increased in size in the 3-4 cm range. The drugs may have slowed things down a little but there was no growth stoppage. So, these drugs are not working for me.

Once I've cleansed my chemo 'palate' in about about 3 weeks I will start another Phase I study. My organ functions are all still good. I'm not starting to fail, so it is still valuable to try something else. If I did nothing, I got the 3-6 month speech (nobody really knows anyway). So, it will be on to protocol #3. I haven't read the study yet, but this will be a pill. So, no twice-weekly infusions and hopefully just bloodwork on a regular basis. Also, apparently it is tolerated pretty well. What's not to love?

I'm not ready to give up. I have a launch to go to in May, visits from family, and our anniversary to celebrate. Today the landscape people were here to do Spring cleanup. WOW! They removed 14 dead trees/bushes, and literally the flower beds are starting from scratch. I am going to take pictures of it as the seasons go on. With a proper cleanup in the spring, then it will probably look even more fantastic.

Tomorrow is a new day, new normal, and we move on. Today was for crying, wallowing, and napping to escape.

End of Cycle 2

Yesterday I had my last study drug treatment of this cycle. My platelets recovered substantially over the weekend. Friday I will have my after-cycle bloodwork done. Monday is the CT scan, and next Thursday we will meet with the doctor to review the before and after scans. I am trying to live in the moment and not to project or worry. I am being moderately successful.

Those Darn Platelets

I went in for treatment on Friday. Everything was a 'go' and they started my pre-medications. I sent off my friend who had driven me. Then they came in and said we can't treat you, your platelets are too low. I called my friend, who fortunately was still in the parking lot.

My platelets were too low to get treatment, but not low enough to receive a bag or two. This happened at the same time in the first cycle. I was disappointed. I'll go back tomorrow for my last treatment and hopefully get it.

So, my sister who was going to pick me up later met me for a movie that afternoon. We saw The Reader, which was fabulous.

A week from tomorrow I will have my next CT scan. That will tell us where we go from here. I'm working really hard not to project the future and just live in the moment. My emotions are a bit at the surface, but I'm staying in control. Fortunately I have a lot going on next week, so that should help me.

Optimism vs. Realism

It's really difficult to strike a balance between the two. We all want to be optimistic. A year ago I don't think we were that optimistic that I would still be here now. The realism part is that there is no forever for my situation. Other than that, I don't have any knowledge about what is to happen. I try to be optimistic that my good luck will hold out.

Of course, this comes up because I'm due to have a scan in a couple of weeks to see how the study drugs are working. I tell myself to live in the moment because I can't change what is to be. It is easier said than done sometimes.

My fiance from college died yesterday in Billings, MT while being treated for his second bout with lymphoma and working towards a bone-marrow transplant. He contacted me a couple of years ago after he had gotten sick the first time. He's had a hard life in many ways, mostly due to his abuse of alcohol. The last decade or more, he got sober and lived a quiet life in the country working for the county.

He said he looked for me because I was someone he had fond memories of. I thought that it sounded like he had paid plenty of penance in his life, and it would be interesting to re-establish contact all these years later. A few months later I started my battle with pancan. He had a lot of wisdom and encouragement to share with me because of having been through chemo and other life journies. He strongly urged me to live in the moment and let the past and the future go since they are uncontrollable in the present.

I have tried hard to do this, and sometimes I am successful. His encouragement, as someone who had taken the journey twice helped me a lot. I am grateful for his kindness and his wisdom. I hope I can make him proud.