Saturday, February 2

Sooo, where are we at?

Yesterday Lisa and I went to the hospital for the appointment with the "fix the side effects of chemo" doctor. (Supportive Care) I don't know that I have blogged too much about it but I have been having a very hard time keeping food down. There were some times the past few weeks where I ate about a fist full of food for the day. (Assuming I didn't expel it at some point.) And my gut would hurt a lot following any food consumption. Thus I went to the doctor to find out what, perhaps, might be wrong with my internals.

Sadly, what should have been something like thirty minutes to an hour ended up taking close to five. Lisa had come in with me because it was "going to be quick" and we thought it would save time vs her dropping me off and then coming back to get me. In that I guess we were wrong.

We showed up for my appointment... we waited for a bit. Saw the first nurse, then the second nurse, and finally the third nurse. (An ever increasing "ranking" of nurses) We talked for a bit and she had a hunch and the hunch involved xrays. So I headed downstairs to get an xray, for which I waited some more. (Surprise) Then I headed back up stairs where we waited a bit more. Then the third nurse AND the doctor came to see me.

After asking me about many of the same things the nurses had asked before (Sometimes I am never really sure if I should record what I tell the first nurse so I can just play it for the subsequent people that follow.) he thought a bit and then said that he wanted to go think about it and do some research a bit. (This impressed Lisa. Primarily as that kind of humility is rarely seen at MDA.) The nurse staid with us for a bit asking some more questions and then she left. We waited a bit more and then the doc came back.

When he returned he suggested we start by trying to simplify my diet. He was going to suggest some drugs, but everything on his list were things I was highly allergic to. Stuff that makes me twitch, be restless, and generally paranoid. We talked and came up with some plans for some diet changes. And then we went home.

I hear, "Huh, that's funny." or "That's strange, that shouldn't happen." or "I've never seen that before." a lot when it comes to my interaction with the medical world. This, was no different. The xrays showed it was not the problem that they thought it would be so they went with something. I'm not saying necessarily that I am upset by this. We now know some things that this is not, and sometimes knowing what it is not is just as important as knowing what it is.

I however, had already started to adjust my diet because of my lack of being able to eat. I don't even really know if there is any kind of lesson in this, other than a reminder that medicine isn't entirely scientific. Like IT, there is a human element to it and you have to guess how something got to be the way it was, or you have to follow a hunch and see if it pays off or not. If not then try something else. Or in my case, sometimes the hunch works for a bit, and then it stops working.

I feel like a lot of my life involves some kind of waiting. Six years ago waiting to see a doctor or, frankly, anything was difficult. Thirty minutes before a movie could seem like forever. While I illustrate to you how much time we spend waiting it's more to give you an idea of what my experience is like, I don't want to come across as complaining. (Though I think I am) I have learned a lot about waiting, silence, and being "alone with my thoughts". I really enjoy being able to be quiet and spend time with my thoughts. It's hard to get "silence" per se, here in Houston, especially in the hospital. There is always someone in the hall talking too loudly about issues you wish you didn't know about the stranger, or "soothing" music is playing somewhere, or the AC vent is rattling, or the sirens in the street are blaring. It's noise I have almost come to ignore, and when I get to places like Colorado Springs, where there isn't as much ambient noise, I really feel like I can breathe. It feels like I have been holding my breath and finally I can breathe again. I am sure there is some quote somewhere about silence being a balm to the spirit or soul or something. I am coming to understand that.

Prayer requests from this long-winded piece: I could use some prayer for my guts. That if it is some kind of bug that it would heal up. If it is a reaction to the medication that my body would adapt. Or if nothing else I could learn how to eat and not make my insides so angry. Either ways I need to start taking in more than the several hundred calories a day.

Also, the extra amounts of time that we have spent waiting for things lately has put a bit of stress on Lisa as something she budgeted an hour, or an hour and a half for, took four or five and she lost those work hours. Plus last night she had a headache/ migraine and spent most of the evening trying to make that go away.

 Perhaps the lesson this week is that no matter how hard you plan things might not come out the way you think they will.

Another thing, the insurance issue I am having (I think I mentioned it?) isn't getting fixed. Which is frustrating because while there is a lot of money involved, it's more that they keep promising things that don't develop.

Thank you again friends and family for your continued prayers and support!

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