77 days, 23 hours 40 minutes --- this is how long I have been out of surgery, and have spent adapting to my new life as a 'ostomate' (see previous discussion).
In past posts I have discussed many things related to the discovery of my condition, lead up to surgery, the surgery experience, hospital and home recovery, cabin fever of home stay, doubts/pains/victories of healing, and the process of chemotherapy and radiation treatments. To put it lightly, I have been through a physiological, psychological and emotional wringer. So, I don't know just where this post will go but feel that it is necessary to keep posting, because, though many milestones are behind me, the battle is not over... To use some boxing terminology, I have completed the first three rounds; surgery, recovery and initial treatment, I am in between rounds now, catching my breath on the stool, waiting for the bell to ring for the battle to continue....
In my case this 'rest-between-rounds' is a chance to re-evaluate where my life is at, at the moment. Physically, my incision are has healed nicely, my new friend - 'Pedro' the stoma ' has healed into his new place on my belly, and seems to be functioning fine. I am learning his new habits, his schedule and how that affects my daily life.
Life with 'Pedro' HAS changed much of my daily and weekly routine. I now find that I have to monitor much more closely what, when and how much I eat, or Pedro will let me know -- watery flow, quickly filling bags at inconvenient times, and the like. Pedro also requires special care. I have to change his 'clothes' daily - small bag for the work day (more on work later), a large bag overnight, or when I am at home on weekends. In addition to this daily care, I have to change the 'appliance' - adhesive ring that holds everything in place twice a week. This process involves gentle washing with antiseptic soap, VERRRRY careful shaving of my belly around Pedro, so the device will stick. Careful cleaning and drying of the skin, and the final application of a new set of gear... a process, that as I become comfortable with it, takes about 10 minutes, start to finish, with about 10 minutes of laying calm, with my hands covering the new gear, allowing the adhesive paste and appliance to 'set' in place. So far, I have been lucky, no leakes, no 'blow-outs' just occasional itchiness from the hair that keeps trying to grow back under the bandage. So, living with Pedro so far has not been too bad....
HOWEVER... I am saddled (no pun intended, well maybe there is this time) this stupid would-vac and am sick and tired of dealing with it. Unlike Pedro, this thing requires much more effort - and considerable discomfort and the sooner I am done with it, the better. As much as I have named my stoma, Pedro, I have named the Vac, 'The Leech'. While I understand it's purpose to remove fluid and encourage cellular growth and speed up the healing process, it adds WHOLE NEW MEANING to the term, 'This Sucks Ass'.... Well actually, in my case, the role of the Leech is to close up what USED to be my ASS. So, in retrospect, sealing up something that has been a part of my anatomy for 48 years, should not expect to be a simple, or quick process. However, this has been going on for nearly 3 months now. The staff at the Wound Care Clinic seem to think that I am healing up quite well and quicker than they expected --- Really? Three months is 'quick-healing'? The pace of recovery is something I have struggled with all along, and they remind me that many of their (admittedly older) patients sometimes take six to eight months to be rid of this thing!
Management of the Leech requires twice weekly visits to the clinic, prefaced by the fairly ouchy process of removing the associated tape, foam, hoses and packing from the 'wound'. I have to do this by myself without the aid of being able to 'see' directly the area from which I am ripping the tape and foam... Maybe that is a good thing, because the area in question is quite tender, irritated and painful -- owing, I guess to the tape starving the skin from proper air circulation, and from fluids that may come in contact with newly growing tissues. As difficult as this process is, I am getting really tired of dragging around the actual vac unit and the hose that attaches it to me. Though the unit is about the size and weight of an old-style portable cassette tape player, the fact that I have to have it with me 24/7 is more than irritating. As you might imagine, I have caught the tubing on everything from door knobs, to seat belt buckles, to the head of a dog who thought he could slip through it. Only once have I actually ripped the 'puck' -mounting device from my hip, and thankfully that was the morning when I had to get it changed anyhow, I have been lucky so far.
So, as I sit here on the metaphorical stool, in my corner, breathing heavily, trying to regain my strength for the next round, I also reflect on my recent phase of treatment for the cancer. As I have noted, my treatment protocol has required me to deal with 28 radiation treatments, and over 100 pills of chemotherapy. This process, involved twice daily taking of pills, and twice daily visits to the Radiation Oncology clinic for the administration of X-Ray radiation - a process, strangely that was quick and painless (an actual treatment takes less than a minute once I am on the table). This time around my side effects were minimal - due to the nature of my cancer - I am getting lighter doses of both chemo and radiation, I was only queasy a few times and had some minor 'sunburn' type irritation on my abdomen (unfortunately right in the area of my surgical scar) and that was about it. Other than that, my only other effects were tiredness, and an inability to sleep at night... never getting more than a couple hours at a time without having to get up and use the bathroom. All in all...as I evaluate myself in the corner... not too bad, considering what others go through in their struggle to beat their individual cancers.
The next part of this between round time has been getting back to work.
The process of getting ready to return to work was a bit nerve wracking... For the past few months I had not had to worry about uniforms, or workboots, or belts, or tools or company hat and coat, ID card, lunch box, etc. So I first had to gather all these things together so I would be ready to go. I wanted to start 'fresh' so I got up early, changed Pedro's 'clothes', tried on my new 'osotomy support belt' (which made me feel like a combination of a sickly old person, and William Shatner wearing his 'girdle' during the last couple of Star Trek Movies. After gearing up in my work clothes, discovering that bending over to tie my boots is still an 'abdominal' challenge. I made some breakfast, packed the car and off to work I went.
The first day back was light duty as I am now part of the 'Fire-Team' I spent the day relocating my desk to my new area, getting settled in my new space and reviewing a small stack of fire testing documents. I discovered that a challenge I will have with my new 'life-style' will be adapting my clothing to accommodate Pedro and his clothes... I got by this week by keeping one part of my shirt untucked to allow my bag to not be crimped by my belt... I think mounting it horizontally will help solve that problem. The next two days at work were much more challenging.... I am doing fire testing now which involves about 5 miles a day of walking, walking and more walking....by the end of day two I was pretty wiped out... I was very glad to have one day back in the office (thanks to one of the bi-weekly changing of the Leech!) I finished the week with one service call on my own (glad to discover I had not forgotten everything!), and learned more about testing at the panel. The only really bad experience was the need to drag around the stupid pump...
Looking ahead, I realize that my battle against cancer and my struggle to get back to a new reality, is far from over. Though I get a reprieve from treatment for six weeks (before 4 months of chemo), I will be trying to rebuild a normal life. Working, paying bills, managing family issues, getting things done around the house, prepping for the Old West End Festival and continuing with my goals of becoming an independent artist.
The challenge will be to maintain my visions, my newly defined goals while getting some balance into my life. Despite myself and my condition, I still have a family, boys to watch over, friends who depend on me (and onto which I depend), and getting back to 'normal' will be very important... So, ring girl, clear the ring, referee, ring the bell... Here I come for the next round.
In past posts I have discussed many things related to the discovery of my condition, lead up to surgery, the surgery experience, hospital and home recovery, cabin fever of home stay, doubts/pains/victories of healing, and the process of chemotherapy and radiation treatments. To put it lightly, I have been through a physiological, psychological and emotional wringer. So, I don't know just where this post will go but feel that it is necessary to keep posting, because, though many milestones are behind me, the battle is not over... To use some boxing terminology, I have completed the first three rounds; surgery, recovery and initial treatment, I am in between rounds now, catching my breath on the stool, waiting for the bell to ring for the battle to continue....
In my case this 'rest-between-rounds' is a chance to re-evaluate where my life is at, at the moment. Physically, my incision are has healed nicely, my new friend - 'Pedro' the stoma ' has healed into his new place on my belly, and seems to be functioning fine. I am learning his new habits, his schedule and how that affects my daily life.
Life with 'Pedro' HAS changed much of my daily and weekly routine. I now find that I have to monitor much more closely what, when and how much I eat, or Pedro will let me know -- watery flow, quickly filling bags at inconvenient times, and the like. Pedro also requires special care. I have to change his 'clothes' daily - small bag for the work day (more on work later), a large bag overnight, or when I am at home on weekends. In addition to this daily care, I have to change the 'appliance' - adhesive ring that holds everything in place twice a week. This process involves gentle washing with antiseptic soap, VERRRRY careful shaving of my belly around Pedro, so the device will stick. Careful cleaning and drying of the skin, and the final application of a new set of gear... a process, that as I become comfortable with it, takes about 10 minutes, start to finish, with about 10 minutes of laying calm, with my hands covering the new gear, allowing the adhesive paste and appliance to 'set' in place. So far, I have been lucky, no leakes, no 'blow-outs' just occasional itchiness from the hair that keeps trying to grow back under the bandage. So, living with Pedro so far has not been too bad....
HOWEVER... I am saddled (no pun intended, well maybe there is this time) this stupid would-vac and am sick and tired of dealing with it. Unlike Pedro, this thing requires much more effort - and considerable discomfort and the sooner I am done with it, the better. As much as I have named my stoma, Pedro, I have named the Vac, 'The Leech'. While I understand it's purpose to remove fluid and encourage cellular growth and speed up the healing process, it adds WHOLE NEW MEANING to the term, 'This Sucks Ass'.... Well actually, in my case, the role of the Leech is to close up what USED to be my ASS. So, in retrospect, sealing up something that has been a part of my anatomy for 48 years, should not expect to be a simple, or quick process. However, this has been going on for nearly 3 months now. The staff at the Wound Care Clinic seem to think that I am healing up quite well and quicker than they expected --- Really? Three months is 'quick-healing'? The pace of recovery is something I have struggled with all along, and they remind me that many of their (admittedly older) patients sometimes take six to eight months to be rid of this thing!
Management of the Leech requires twice weekly visits to the clinic, prefaced by the fairly ouchy process of removing the associated tape, foam, hoses and packing from the 'wound'. I have to do this by myself without the aid of being able to 'see' directly the area from which I am ripping the tape and foam... Maybe that is a good thing, because the area in question is quite tender, irritated and painful -- owing, I guess to the tape starving the skin from proper air circulation, and from fluids that may come in contact with newly growing tissues. As difficult as this process is, I am getting really tired of dragging around the actual vac unit and the hose that attaches it to me. Though the unit is about the size and weight of an old-style portable cassette tape player, the fact that I have to have it with me 24/7 is more than irritating. As you might imagine, I have caught the tubing on everything from door knobs, to seat belt buckles, to the head of a dog who thought he could slip through it. Only once have I actually ripped the 'puck' -mounting device from my hip, and thankfully that was the morning when I had to get it changed anyhow, I have been lucky so far.
So, as I sit here on the metaphorical stool, in my corner, breathing heavily, trying to regain my strength for the next round, I also reflect on my recent phase of treatment for the cancer. As I have noted, my treatment protocol has required me to deal with 28 radiation treatments, and over 100 pills of chemotherapy. This process, involved twice daily taking of pills, and twice daily visits to the Radiation Oncology clinic for the administration of X-Ray radiation - a process, strangely that was quick and painless (an actual treatment takes less than a minute once I am on the table). This time around my side effects were minimal - due to the nature of my cancer - I am getting lighter doses of both chemo and radiation, I was only queasy a few times and had some minor 'sunburn' type irritation on my abdomen (unfortunately right in the area of my surgical scar) and that was about it. Other than that, my only other effects were tiredness, and an inability to sleep at night... never getting more than a couple hours at a time without having to get up and use the bathroom. All in all...as I evaluate myself in the corner... not too bad, considering what others go through in their struggle to beat their individual cancers.
The next part of this between round time has been getting back to work.
The process of getting ready to return to work was a bit nerve wracking... For the past few months I had not had to worry about uniforms, or workboots, or belts, or tools or company hat and coat, ID card, lunch box, etc. So I first had to gather all these things together so I would be ready to go. I wanted to start 'fresh' so I got up early, changed Pedro's 'clothes', tried on my new 'osotomy support belt' (which made me feel like a combination of a sickly old person, and William Shatner wearing his 'girdle' during the last couple of Star Trek Movies. After gearing up in my work clothes, discovering that bending over to tie my boots is still an 'abdominal' challenge. I made some breakfast, packed the car and off to work I went.
The first day back was light duty as I am now part of the 'Fire-Team' I spent the day relocating my desk to my new area, getting settled in my new space and reviewing a small stack of fire testing documents. I discovered that a challenge I will have with my new 'life-style' will be adapting my clothing to accommodate Pedro and his clothes... I got by this week by keeping one part of my shirt untucked to allow my bag to not be crimped by my belt... I think mounting it horizontally will help solve that problem. The next two days at work were much more challenging.... I am doing fire testing now which involves about 5 miles a day of walking, walking and more walking....by the end of day two I was pretty wiped out... I was very glad to have one day back in the office (thanks to one of the bi-weekly changing of the Leech!) I finished the week with one service call on my own (glad to discover I had not forgotten everything!), and learned more about testing at the panel. The only really bad experience was the need to drag around the stupid pump...
Looking ahead, I realize that my battle against cancer and my struggle to get back to a new reality, is far from over. Though I get a reprieve from treatment for six weeks (before 4 months of chemo), I will be trying to rebuild a normal life. Working, paying bills, managing family issues, getting things done around the house, prepping for the Old West End Festival and continuing with my goals of becoming an independent artist.
The challenge will be to maintain my visions, my newly defined goals while getting some balance into my life. Despite myself and my condition, I still have a family, boys to watch over, friends who depend on me (and onto which I depend), and getting back to 'normal' will be very important... So, ring girl, clear the ring, referee, ring the bell... Here I come for the next round.
