Today marks three weeks home from the Cleveland Clinic hospital, where the proctocolectomy procedure was performed - colon and tumor removed, ileostomy constructed and I was stitched back together. With the hospital-recovery process behind me, I have moved on to further recovery at home. While being home is pleasant, the process of recovery has been, and continues to be, slow, punctuated by pain and pretty much continual discomfort of some form or another, I like to THINK that I am making progress.
As much as my hospital experience was controlled and run by the baffling schedule of tests and procedures designed - if not to let me actually rest - but to continually monitor my progress, my new schedule at home has it's own rhythms that I need to adjust to.
Masked by the mental-narcotic of being in my own 'space' for the first few days, the actual pain I was feeling at home was minimized a bit, well with the aid of meds too, so getting adjusted to sleeping in my oldest kids room (he being at college), this way my stirrings would not disrupt my wife's sleep, and, we figured being on bed rest in his room would make for easier access for the home nursing care I was to receive. So, there I lay, waiting... not much too do.
My abdomen was much more tender than I had imagined, and looking down at my belly was not very encouraging. Where I used to see a smooth, though hairy tummy leading from chest to my belly button, now there appeared what appeared to be the remnants of some sort of physiological battle zone. I now had a zig-zag of incisions, sealed with 21 stainless steel staples (yes I counted them...not much more to do, laying there, bored - more on THIS later), the strangeness of the ileostomy that I could see through the bag now attached to my belly, and finally another bandage covering yet another wound between my belly button and, my, well, nether regions where the abdominal sump was attatched in the hospital. Man, what a mess. I now understood much more fully why every move hurt and that recovery WOULD take much longer than I had initially figured.
If this wasn't enough to deal with, I have had a device called a 'wound-vac' attached to what used to be the, uh, 'exit-port-region' for digested food. The surgery I had resulted, not only in JUST removing the colon, but my entire poop-chute region, and therefore required the permanent surgical sealing off of this area. But (no pun intended), this is not as simple as sewing up a hole in your favorite jeans, no, that would be too easy, and therefore NOT something allowed for me to experience. In this case the 'exit-wound' as it were requires continual drainage in order to heal, and this machine attached supposedly cuts down the healing time from months to weeks. While this SOUNDS great and encouraging, it is not like putting a band-aid on a boo-boo. So the outlook is not great. I have already spent nearly 2 full weeks in the hospital, and am apparently looking at 3-6 MORE weeks at home, recovering.
Much like the IV lines in the hospital, I am now 'tethered' to this machine, and my movement is limited to bedroom, bathroom, living room and kitchen. That's it. Not healthy enough to move much, in no condition to GO any where, nothing to do but sit (uncomfortably) and wait for my body to heal.... Bed Rest = House Arrest!
Moving forward from 'Homecoming' on March 15th to the present, how have I spent my time? Not that I have spent any time in prison, but despite access to better food, my family and friends and comfortable accommodations, my schedule has been pretty structured; here is the Reader's Digest version. Note that I don't really put CLOCK TIMES on the list, because I not only has my body been recovering from surgery, it has to re-set my biological clock, which has been disrupted for the past two weeks in the hospital, and now that I am home, it has to 'heal' as well, making things even more complicated.
Bed-Rest/House-Arrest Schedule
WAKE UP : - weirdly starving I pull my self ever so slowly out of bed, make a restroom stop, then head to the dark kitchen - trying not to make too much noise - don't want to wake the family or the dogs.
BREAKFAST : - brew up some fresh coffee (one of life's pleasures!) make a ham and cheese bagel, take the morning pile of meds with some juice.
SITDOWN #1 : - with coffee and breakfast in hand, I settle down into my living room chair, taking several minutes to adjust various pillows and a blanket, I turn on SPORTS CENTER or an old movie, eat my breakfast, wash it down with the coffee. By then the Vicodin has set in and I am off to....
NAP #1 : - I wake up - about mid morning - hungry AGAIN...must be from not eating much of anything for nearly two weeks.
SITDOWN #2: - so, I make a snack, settle down in my chair again, it is, depending on the day, time for either House, The Sopranos, or a Karate Kid Movie (not that I'd watch it of course), with food in the tummy I am off to...
NAP #2 : - I wake this time, nearly time for lunch, so I get up try moving around a bit, discover that anything more than about 10 steps at a time makes me feel like my insides are going to fall out, so, I grab a pain pill, settle back down into my chair and I am off to....
You get the picture. Mornings - food, uncomfortable seating, naps, meds. Wash, Rinse, Repeat. Actually for the first couple weeks the afternoons, and evenings are not much different... The Television programs change - I got to watch more basketball than I have in probably 5 years! But that is it... Imagine, if you will, the only variation being which CHAIR I sit in, what position I get myself into and how many times I have to get up and down to relieve the discomfort from this wound vac! My youngest asked me what it felt like to have this vac attached to me all the time. I thought about it, and what came to mind is this. I told him, "Well, remember when you had a 'wedgie'?", he said, "Yes! They hurt!", to which I responded, "Well, imagine that feeling 24 hours a day.", he said, "Ow!" and walked away. I couldn't agree more...
Despite this medical confinement - my pump - kind of like an ankle bracelet that Junior Soprano is forced to wear during his house arrest - my time is kind of broken up by the twice weekly visits of my vac-nurse who performs the ouchy task of changing the dressing. I will spare you the details, but say that a vicodin induced nap follows her visit. My ostomy care nurse also visits to assist in changing my new 'appliance'. The word 'appliance' almost makes it seem like it is somehow less, uh, invasive that it is...WRONG! It is, however, something I have to learn to deal with, for the rest of my life. Of all the things I am dealing with, strangely, it seems the easiest to manage of all the stuff I am dealing with.
So, as you might guess, during the last week or so I have been looking for ANY way to get out of the house for a bit. In the past week I have moved up to 1/2 mile walks in my neighborhood, brief trips out to my garage to retrieve art supplies, and finally, last weekend, I ventured out to an Art event and lasted about 6 hours before needing to return home. The other thing that has helped during my 'confinement' is the visits from friends, willing to spend some time with me. Heck, last weekend I actually was able to stand at the grill and cook a dinner for some special folks, who I cannot thank enough for keeping me sane during this time!
Now that I am more mobile - despite my wound-sucking-pump gurgling away at my side, I am able to begin doing some small projects, studying for an exam for work, and even, returning to my efforts at blogging. I look forward to continued recovery, and the ability to get rid of the pump, and free myself from this medical house arrest and get back to normal stuff.
Unfortunately, this will be a slow process, and I am trying to be patient....
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