Wednesday, August 25, 2010

The Bends

I have been off line so much partially because the chemo appears to be affecting my eyesight as well, making me slightly more farsighted temporarily. Focusing on my iphone for any length of time gave me piercing eye/head pain. And I just moved and haven't set up the computer yet, since I don't have a desk. 5 steps forward, 6 steps back. I love the new house though and am busying myself by getting things sorted here. It is a much healthier place to be in than my last apartment which was cramped and dark. Kaia loves her yard as well.

In general, Im feeling like I have the bends. I've never had the bends, but this is my idea of what they would be like. My joints and muscles ache, chest feels tight. I feel unsettled, restless. Fevers come and go. Having a hard time sleeping, even with Ambien. Nausea is slight yet constant.

Yesterday was perhaps the worst day yet as far as general malaise goes. Up until this point my biggest concern had been the nausea, which was fairly well controlled. I had been thinking, if need be I could easily do another round if they wanted. Yesterday I began thinking that I'm not sure if I would. Or at least, I'd likely have an anxiety attack as they're putting the needle in, knowing what was on the other side.

The nice thing is that hopefully this is it for the chemo. The tumor is shrinking (this is my intuition and observation talking). This will be confirmed by the CT, then we'll start talking about surgery. That will be adventure #2, about which I am trepidacious. I am likewise looking forward to getting through it all and looking back on this from the perspective of time. May not have much more to report until the CT scan on 9/7, as I should be steadily improving until then.

Monday, August 23, 2010

Tuesday, August 17, 2010

Round 3

Have been offline a lot recently, spent last weekend moving with the help of many kind people. It was a little like an Amish barn raising, everything got packed, loaded, moved, unloaded and unpacked in a matter of hours. It was a sight to see and it was timed mid-month to take advantage of the end of chemo round 2 when I would be feeling the best. I was feeling pretty good, actually, just a tiny bit tired.

It's cool to be in what feels like my own house and to know that I'll be here for awhile. I've been trying to go through my stuff and figure out what can stay, what doesn't fit, etc. IKEA is my new best friend. Also it's really nice to not have a hyperactive 2nd shift upstairs neighbor rearranging furniture every night of the week at 3 am.

I'm at the clinic for my final round of chemo, this is the cisplatin and gemzar. Next week I'll get just the gemzar, and then that's it for round 3.

The plan is: after the next treatment I'll get a CT scan. If the tumor has shrunk, I'll be cleared for surgery and will have that in early November at Mayo. A week in the hospital for the surgery, another couple of weeks with very limited mobility, and them hopefully all done with this entire business except for occasional checkups.

Feeling enormously tired right now, but I know it's not the chemo since I'm only getting saline right now, no actual IV drugs yet. But I did take the Emend this morning (my prescription preventive anti emetic). So that must be kicking in.

Monday, August 09, 2010

Another One Down

Chemo round two over with, and energy feeling very good. No nausea left and feeling quite normal except for the hair loss, which continues but is now somewhat irrelevant due to the recent head shaving. I'm still adjusting, but it's growing on me. No pun intended.

I spent the weekend at the Dublin Irish Festival. Sadly, it was Dublin, Ohio and not Ireland. But still: the nicest Irish fest I've been to yet. Big, clean, well run and plenty of good acts. I was here with RY and GH. RY was brought out from The Cities to run sound for an internationally touring Irish band, considered by many to be one of the best Irish bands the world in their genre of traditional session style Irish music. Being associated with the band by extension meant I got to spend time with, get to know and play music with musicians that are at such a high level of skill and musicianship that people would pay a great deal for the opportunity. I managed to get invites from these people to play, jamming until 4 am. A wonderful time.

This is a rare opportunity for the bands as well. They all tour most of the year, but don't have as many opportunities to be all in the same place together all weekend, so they swap songs and stories, bum cigarettes, talk nose to nose and buy each other drinks. It was a reminder to me of how hard the touring life can be. Not necessarily physically, though it can be that too, but emotionally. For most bands like this, the only people they can count on are the bandmates, everyone else they see and interact with changes from day to day. Having a relationship, a dog, or even an apartment is frequently impossible. This weekend was a chance for these musicians to see not just fellow countrymen and women and hear familiar voices and accents... but to see genuine old friends that have their own tour schedules year round so their paths rarely cross. It was lovely to watch and I'm happy for all of them to have these sorts of opportunities.

this week I'm packing to move, which will be be on Sunday the 15th. Chemo the following Tuesday, which will hopefully be the last round. I also need to work on switching my health Insurance this week, which will mean that I am have Dr. Hunter at Mayo do the followup and schedule the surgery. Hopefully this will all be done with by thanksgiving.

Monday, August 02, 2010

Round 2, Part 2.

Off to chemo again shortly with JL. This will be the first time for her seeing the actual process firsthand. It's actually fairly boring in general, but I get nervous with the needle sticks to get the IV in. Once that's in and running, it's fairly easy.

Today I will get only one drug: the Gemcitabine (Gemzar). This one is easier on the system, causing only a little nausea. The first day of the cycle (which was last week for this cycle) they give me the Cisplatin and Gemzar, plus a steroid, plus a whole bunch of saline since the Cisplatin is so hard on the kidneys. Luckily the IV is on a pole and I'm allowed too e around, 'cause I have to get up to use the bathroom like every 1/2 hour of the 5 hour treatment with all that liquid going in.

In my first round they also gave me an IV steroid, but that kept me up and unable to sleep well for about 3 days. I have talked them into giving me no steroid at all with the Gemzar, so I may be tired tonight but at least I will sleep.

Last week was rough, in all. Upping the Cisplatin plus just the cumulative effect of this all meant that I was good for nothing whatsoever on Thursday and even Friday, and have felt nauseous and tired all week. Yesterday the appetite was coming back slightly, and I slept well on Saturday night, not as well last night.

In all, the recovery back to 100% seems to be taking a little longer each week. Since this experience is so different from person to person; there really isn't a "normal" here. The course, type, delivery and duration of chemo varies so much from one patient to the next (depending on the cancer's location, severity, stage, age of patient) that reports from other people regarding the severity or lack thereof of their own chemo experiences are helpful Information, but still somewhat irrelevant to what I will experience. Even the docs cant tell me 100%: they can give good guidelines for what's normal with my drugs and regimen, but really there's no way know exactly how it will affect me until I'm in the thick of it, or looking back on it from the perspective of time.