TSK

I have wanted this blog to be not only informative, but also interesting to read, and even amusing. As anyone who knows me will attest, I love to make people laugh, I love to tell stories and jokes and make people smile. When Tom reads the blog posts, I love hearing him laugh at the various things I have written.

But in doing that, I fear I may have glossed over some of my other plans for this blog. I do want this to be a real view of my trip through Chemoworld, and to give readers insights as to what it is truly like. I want this to be an honest view of this experience, and in looking back over some of the posts, I may have sugarcoated some of it. That is actually okay - I think most people understand that chemo is not a laugh riot, so they don't really expect it to be a walk in the park.

But I do want to talk about some of the real issues that come up as a person getting very intense chemo and dealing with what is ultimately a very scary diagnosis.

So TSK is today's acronym for the three parts of my travels that I want to describe.

Terror

No blog on cancer could possibly gloss over the intense feelings of fear and terror that come over someone going through this. I have a lot of faith in my doctors. Kaiser has been incredible, and I feel very well taken care of.

But that does little for the overwhelming feelings of fear that wash over me pretty much daily. I have been able to step into the experience and let it happen to me,but it doesn't mean I'm not afraid. 

It's not always rational. I fall asleep on the couch and wake up with a pain in my chest. Of course, it's because I have slumped over on my side and slept in an awkward position - but does that EVER occur to me? My immediate reaction is "new tumor." I take a bunch of pills and occasionally will choke a bit on some (I tend to take pills by the handful). When that happens, it never occurs to me to think "tired of taking pills." Nope, it's always "losing the ability to swallow." 

And some of i,unfortunately, IS rational. I have Stage Four esophageal cancer. That is a scary diagnosis. Sometimes I wake up (these days, everything happens when I wake up) and I get a moment of panic - how is this survivable? I worry about the results of the CT scan that will happen in May. Tom is great about being reassuring, and is always pointing out the ways he sees improvement, not only to my reaction to chemo but also in how the pain of what was inside me is largely gone. He believes this is working. Mostly, I do too - but I have my moments.

Suffering

Of course, the terror is augmented by the suffering, and I have to admit that I have done plenty of that as well. Pain management has come a very long way, but there are still a lot of things that hurt. I had a pretty severe bout of constipation - not like a one day "oh, feeling kind of blocked" but gut tearing searing pain. Pain in parts of my body where I would just rather not have pain.

Having to even think about some of the functions of my body just isn't any fun, but having the feeling of intense pain in those areas is really horrible.  Having my hearing blocked while dealing with other blockage and discomfort - it just ain't much fun. Seriously. Don't try this at home.

Kindness

And on top of it all, there is incredible kindness. I am still firmly swaddled in the love of my friends and my family. Tom of course has been amazing, but my family has also rallied around. My sisters Ann and Peggy have taken it as a personal challenge to get my weight up, ad they have been thinking of various things to tempt me to eat. My brother Mark and sister Stephanie have been in close touch, sending jokes and making comments and basically being there for me. 

And my friends have rallied around in ways I never could have expected. Everyone - EVERYONE - wants to bring food, and I've had to beg off numerous times. A problem here is that I'm not supposed to eat any food that has been in the fridge for more than two days - evidently, there is some kind of low grade mold or something that grows on food after 48 hours, and although most people have no issue with it, those of us with chemo compromised immune systems are at risk. So it's sometimes hard to tell well-meaning people "Please don't bring food."

Some of the food that has been brought has been incredible. Claudio and Alessandra, our next door neighbors, have been making me an incredible soup that seems to be one thing I can consistently eat. 

The cards, letters, postcards have been incredible. Jen M-P has sent these amazing postcards that have video attached, so I can hear her telling me why she chose each card - really fun to watch. Sally, Johno and Sarah have all been vying to see who could send the most postcards. Believe it or not, this helps enormously. My days are incredibly dull - mostly dozing, watching movies I have already seen, reading. The arrival of the mail has become a big event in my life. 

Kindness, unlike terror and suffering, is not hard to take. But the kindness surrounds me in the same way, in that it feels like it is totally covering me. It's a good feeling, but it is one I'm not that used to having, particularly on a daily/hourly basis. 

Well, my energy is gone, so I better close. That is today's snapshot of Chemoworld. More vacation photos to come.