Apparently I heal faster than expected. I was released from the hospital on Friday, July 20, after a 4 day stay. I got off the lines (morphine, antibiotics, Ringer's, and catheter) after 2 days, then was fitted with a more comfortable cast on the 20th. Of course I had 3 drain lines in me - one in my arm, two in my side for the back incision - as well as a plethora of pills, everything from antibiotics to pain meds to laxatives. I was still wearing a hospital gown, but at least a shred of my dignity returned as I donned short pants for the first time since the operation! I'll post pictures later as my brother emails them to me.
I've been resting and recovering at my Mom's place, a very comfortable abode. Lots of family and friends come to visit, and my drains are cared for expertly by a variety of nurses, siblings, and friends from my Mom's condo. They've made trips to my favorite markets to buy me vegetarian fare (I've been especially feasting on lots of salad and fruit and soy protein), and one friend (Paula G) made me special meals - ratatouille inspired by the movie of the same name, and tofu & eggplant curry over green rice. I could get too used to this type of treatment!
It's been two weeks now since the surgery. Last week two of the three drainage tubes were removed, and my cast was redone to give me a better fit. This week (tomorrow) most likely the last drainage tube will come out. I've also been given clearance to go to Cape May this August, so I won't miss the family trip after all! I can do a fair number of things - bathing, dressing, feeding, and the like -so I'll see what mischief I can get into in NJ's Victorian vacation mecca. I will have my camera and tripod, so maybe I can still capture the nieces and nephew at their best on the beach.
All told, the doctors were right when they said I'd feel like a human being in two weeks. I was able to go to my house yesterday, to prepare for Cape May, and spend 3+ hours packing camera gear, setting up the laptop for photography (adding Photoshop and such), getting clothes and my beach chair, and other assorted sundries (like which bottle of wine to take). We'll see how much faster mending occurs at the Jersey shore. Until then, enjoy the heat of August and pray for rain for the crops.
Wednesday, August 1, 2007
Saturday, July 28, 2007
Under the Arm, Over the Shoulder
Hello again!
A week and a half after the surgery, I'm hale enough to resume the blog. All went exceedingly well with the surgery, which took 7 hours (7:30 - 2:30). I had to wait in recovery for 4 hours while they got my room ready, largely because I did better than expected. They had booked me into the ICU right after surgery, thinking that if they needed to do nerve transplants or skin grafts I'd need closer attention, but I didn't need either. My oncologist said the tumor was about the size of a Nerf football, but it came out fairly easily. Apparently the radical resection (pedicle flap) fit perfectly into the space left from the tumor removal. Per my "plastics" (the term for the plastic and reconstructive surgeons), all looks really good. They've got me in a cast and don't want me to do anything with the transferred muscle for 2 weeks.
But I am remiss! My brother took some shots both pre- and post-op, that I'd like to share. None of the gruesome shots with blood and sutures, though I have them. More of the little things that document the process of overcoming and healing.
The fabled "Big Arm", on the last night of its existence
Post-op with morphine pump - notice the smile!
Day 2 post-op having lunch sitting in chair - still "wired in"
Day 2 post-op, back from a stroll with Mom - nice booties & hose, eh?
I reached my room and was placed on my right side, the same position I'd been in for the surgery and in the recovery room for 11 straight hours. As you might have guessed, the TV was over my left shoulder, so I didn't watch any TV from bed. Besides my morphine pump I had IV antibiotics and Ringer's solution, and I had 3 drainage tubes, 2 in my back and one in my arm, courtesy of the surgery. They'd made me don support hose pre-op to ward off blood clots, plus the booties so that I didn't slip. Then they placed air-driven cuffs around my calves, to massage them and keep blood clots from forming. I was also catheterized, so going to the bathroom was "automatic". All in all, it had been a very good day.
I must say that my family's and friends support during the hospital stay was extraordinary. I never lacked for company and companionship and encouragement during the four days I was there. They are an incredible source of inspiration and gratitude for me, and I thank them with all my heart for their unwavering outpouring of love and care. Also, the nursing and clinical assistant staff at the Weinberg Center were spectacular, combining competence and caring with an attitude of really wanting to get to know me as a person while I was under their care. They have left me with a strong impression of just how much difference an uplifting demeanor can facilitate recovery.
A week and a half after the surgery, I'm hale enough to resume the blog. All went exceedingly well with the surgery, which took 7 hours (7:30 - 2:30). I had to wait in recovery for 4 hours while they got my room ready, largely because I did better than expected. They had booked me into the ICU right after surgery, thinking that if they needed to do nerve transplants or skin grafts I'd need closer attention, but I didn't need either. My oncologist said the tumor was about the size of a Nerf football, but it came out fairly easily. Apparently the radical resection (pedicle flap) fit perfectly into the space left from the tumor removal. Per my "plastics" (the term for the plastic and reconstructive surgeons), all looks really good. They've got me in a cast and don't want me to do anything with the transferred muscle for 2 weeks.
But I am remiss! My brother took some shots both pre- and post-op, that I'd like to share. None of the gruesome shots with blood and sutures, though I have them. More of the little things that document the process of overcoming and healing.
The fabled "Big Arm", on the last night of its existence
Post-op with morphine pump - notice the smile!
Day 2 post-op having lunch sitting in chair - still "wired in"
Day 2 post-op, back from a stroll with Mom - nice booties & hose, eh?
I reached my room and was placed on my right side, the same position I'd been in for the surgery and in the recovery room for 11 straight hours. As you might have guessed, the TV was over my left shoulder, so I didn't watch any TV from bed. Besides my morphine pump I had IV antibiotics and Ringer's solution, and I had 3 drainage tubes, 2 in my back and one in my arm, courtesy of the surgery. They'd made me don support hose pre-op to ward off blood clots, plus the booties so that I didn't slip. Then they placed air-driven cuffs around my calves, to massage them and keep blood clots from forming. I was also catheterized, so going to the bathroom was "automatic". All in all, it had been a very good day.
I must say that my family's and friends support during the hospital stay was extraordinary. I never lacked for company and companionship and encouragement during the four days I was there. They are an incredible source of inspiration and gratitude for me, and I thank them with all my heart for their unwavering outpouring of love and care. Also, the nursing and clinical assistant staff at the Weinberg Center were spectacular, combining competence and caring with an attitude of really wanting to get to know me as a person while I was under their care. They have left me with a strong impression of just how much difference an uplifting demeanor can facilitate recovery.
Friday, July 13, 2007
Commencement
I title this entry "Commencement" because of something I remember from my high school graduation some 35 years ago, when a speaker said that although we call the end of a segment of our schooling commencement, the word itself denotes a beginning, not an ending. It seemed appropriate to me as I think of my last few days living with the "big arm" - using it in ways I'm not likely to be able to after surgery, thinking about how I haven't had my left arm flush against my side in 6 months, wondering how life as I've known it for 52 years will shortly change - that this is precisely the case here and now. A part of my life is ending; another part of my life is just beginning. This is simply the journey I've been given. It's neither bad nor good, just what is. My journey. In some ways it's pretty exciting, because everything I'll face will be absolutely new. It's a chance to learn so much more about myself as a person, and a chance to grow. Perhaps it's not the way I would have chosen to do it, but it is the way I have been given to pursue. And so I will, with eyes wide open and a willingness to make the most of it. The unknowns will be knowns quite shortly. And, really, the only way out of what I'm about to go into is to go through it and come out the other end.
I'm coming into the last few days before the actual surgery happens. The radiation burn on the arm has largely healed - just a little rough skin, most of which will be gone after the operation Tuesday.
I spent Wednesday the 11th getting a final MRI, pre-op physical, and meeting with my surgeon, Dr. Weber. Pretty much what I expected, although it was a long day. I'm told my left arm will never be as strong as it once was, but it will be functional. The only dicey part may be that a nerve that lifts my wrist back may or may not be overrun by the tumor. They won't know until they open me up, but if it is compromised, then they'll have to remove it and do a nerve transplant. In that case, they would take a nerve from near my ankle and transplant it into my arm to replace the one sacrificed to remove the tumor. The downside is that the recovery time for that would be around 1 year. Still, the nerves that allow me to make a fist will be intact, and a year isn't too long if I get to keep a functioning arm. Dr. Weber assures me that I'll still be able to do photography.
Per Dr. Weber, I'll probably be in surgery for about 6-7 hours, then to the ICU for recovery. After that, I'll have a private room in the Weinberg Center at Hopkins, where I'll be for up to a week. It could be less, depending on complications (or a lack thereof). Then I'll be at my Mom's recuperating for a week more. By then, as my reconstructive surgeon, Dr. Singh, says, I should be feeling like a human being again and I should be well along to recovering from the surgical procedures. I'm looking forward to finishing the final Harry Potter book during that time.
Until next Tuesday, I'm getting the house and bills in order, arranging for cat care and the like, and enjoying the last few days before surgery by doing things like mowing grass and having dinners with friends. I'll continue blogging after the surgery as I'm able and as I have access to the Net. On to the next part of the adventure!
I'm coming into the last few days before the actual surgery happens. The radiation burn on the arm has largely healed - just a little rough skin, most of which will be gone after the operation Tuesday.
I spent Wednesday the 11th getting a final MRI, pre-op physical, and meeting with my surgeon, Dr. Weber. Pretty much what I expected, although it was a long day. I'm told my left arm will never be as strong as it once was, but it will be functional. The only dicey part may be that a nerve that lifts my wrist back may or may not be overrun by the tumor. They won't know until they open me up, but if it is compromised, then they'll have to remove it and do a nerve transplant. In that case, they would take a nerve from near my ankle and transplant it into my arm to replace the one sacrificed to remove the tumor. The downside is that the recovery time for that would be around 1 year. Still, the nerves that allow me to make a fist will be intact, and a year isn't too long if I get to keep a functioning arm. Dr. Weber assures me that I'll still be able to do photography.
Per Dr. Weber, I'll probably be in surgery for about 6-7 hours, then to the ICU for recovery. After that, I'll have a private room in the Weinberg Center at Hopkins, where I'll be for up to a week. It could be less, depending on complications (or a lack thereof). Then I'll be at my Mom's recuperating for a week more. By then, as my reconstructive surgeon, Dr. Singh, says, I should be feeling like a human being again and I should be well along to recovering from the surgical procedures. I'm looking forward to finishing the final Harry Potter book during that time.
Until next Tuesday, I'm getting the house and bills in order, arranging for cat care and the like, and enjoying the last few days before surgery by doing things like mowing grass and having dinners with friends. I'll continue blogging after the surgery as I'm able and as I have access to the Net. On to the next part of the adventure!
Tuesday, June 19, 2007
How Do You Bandage Your Underarm (and Still Use the Arm Attached To It)?
Last Wednesday (June 13) I had my last radiation treatment before surgery. Phase 1 is officially over, and the resting period before surgery (Phase 2) is upon me. Of course, things were going a bit too smoothly, so Week 5 of the radiation brought its own delights - skin problems. These were expected, they just hadn't manifested through Week 4, so I thought I might miss this part, even though it had been told to me that such a scenario was common.
Basically, the accumulation of high-energy X-rays finally caused the skin under my arm to burn and peel. So I have a kind of sunburned patch under my arm that is raw, which is annoying and sporadically painful. More of an nuisance than really problematic in the pain sense, but needing to be dealt with. The Biafine cream is fine, but the doctor decided to prescribe another cream, one which is used to treat burn victims and helps them grow new skin, as well as some other agents. The new cream is Silver Sulfadiazine.
Before the cream was available from my pharmacy (a 2-day wait), the prescription for my underarm was to put a kind of dressing over the area, called Xeroform, which is a yellow "gauze impregnated [their word, not mine] with 3% Xeroform (Bismuth Tribromophenate) in a petrolatum blend." Translated, this is a sticky yellow gauze that keeps the area moist and clean so that it can heal. Think gauze soaked in Vaseline with an anti-infective agent that's bright yellow. Then I covered the Xeroform with a non-adhesive dressing (called Telfa). Then I used tape to hold that in place while I made a kind of shoulder harness from the tape to go around my shoulder and hold the whole thing in place. I had to use two long strips of tape, one slightly longer than the other, and place the two strips with the sticky sides facing each other except for the ends. This allowed the part that went around my shoulder not to be stuck down on my shoulder, because removing that much tape from skin is not a pleasant experience. The sticky ends were taped to the back of the non-adhesive dressing and held it (mostly) in place. The whole apparatus was mostly a Rube Goldberg contraption, especially as the movement of the shoulder makes placing a bandage to stay put under your arm highly problematic. I did it for two days, and it took about 30 minutes each day to put the thing on. Needless to say, the fit was not overly comfortable.
When the Silver Sulfadiazine arrived, I was instructed to put it on the affected area with one half of a tongue depressor. This white cream is the consistency of cake frosting, so it feels rather like icing a cake a couple of times a day. But it stays in place without a bandage, so I've ditched the Xeroform, non-adhesive dressing and Elliott Ness shoulder holster tape job for just the Silver Sulfadiazine and Biafine creams. I don't wear my best shirts, and it's a lot more comfortable. It also seems to be working, as the Silver Sulfadiazine (an antibiotic that helps burned skin heal and regenerate) and Biafine combination has, over the past 5 days, lessened the annoying pain and begun the healing process of the skin. Also, not receiving radiation helps the process immensely.
All in all, things are going along just swell. I'm busy at work, getting ready to go to a conference for 3 days in DC, and just short of one month before the surgery. Perhaps I'll have fully regenerated skin under my arm before then - who knows. In the long run, the effects of the radiation on the tumor site seem to have done exactly what was hoped for, and now I'm getting my house (figuratively and literally) in order before going on to the next challenge.
Basically, the accumulation of high-energy X-rays finally caused the skin under my arm to burn and peel. So I have a kind of sunburned patch under my arm that is raw, which is annoying and sporadically painful. More of an nuisance than really problematic in the pain sense, but needing to be dealt with. The Biafine cream is fine, but the doctor decided to prescribe another cream, one which is used to treat burn victims and helps them grow new skin, as well as some other agents. The new cream is Silver Sulfadiazine.
Before the cream was available from my pharmacy (a 2-day wait), the prescription for my underarm was to put a kind of dressing over the area, called Xeroform, which is a yellow "gauze impregnated [their word, not mine] with 3% Xeroform (Bismuth Tribromophenate) in a petrolatum blend." Translated, this is a sticky yellow gauze that keeps the area moist and clean so that it can heal. Think gauze soaked in Vaseline with an anti-infective agent that's bright yellow. Then I covered the Xeroform with a non-adhesive dressing (called Telfa). Then I used tape to hold that in place while I made a kind of shoulder harness from the tape to go around my shoulder and hold the whole thing in place. I had to use two long strips of tape, one slightly longer than the other, and place the two strips with the sticky sides facing each other except for the ends. This allowed the part that went around my shoulder not to be stuck down on my shoulder, because removing that much tape from skin is not a pleasant experience. The sticky ends were taped to the back of the non-adhesive dressing and held it (mostly) in place. The whole apparatus was mostly a Rube Goldberg contraption, especially as the movement of the shoulder makes placing a bandage to stay put under your arm highly problematic. I did it for two days, and it took about 30 minutes each day to put the thing on. Needless to say, the fit was not overly comfortable.
When the Silver Sulfadiazine arrived, I was instructed to put it on the affected area with one half of a tongue depressor. This white cream is the consistency of cake frosting, so it feels rather like icing a cake a couple of times a day. But it stays in place without a bandage, so I've ditched the Xeroform, non-adhesive dressing and Elliott Ness shoulder holster tape job for just the Silver Sulfadiazine and Biafine creams. I don't wear my best shirts, and it's a lot more comfortable. It also seems to be working, as the Silver Sulfadiazine (an antibiotic that helps burned skin heal and regenerate) and Biafine combination has, over the past 5 days, lessened the annoying pain and begun the healing process of the skin. Also, not receiving radiation helps the process immensely.
All in all, things are going along just swell. I'm busy at work, getting ready to go to a conference for 3 days in DC, and just short of one month before the surgery. Perhaps I'll have fully regenerated skin under my arm before then - who knows. In the long run, the effects of the radiation on the tumor site seem to have done exactly what was hoped for, and now I'm getting my house (figuratively and literally) in order before going on to the next challenge.
Saturday, June 9, 2007
No Red, But Skin So Soft
Although I've asked twice, there seems to be a scarcity of red markers in the radiation oncology building, so I'm stuck with turquoise. Not bad, but a little high contrast when wearing an orange or red t-shirt. It really doesn't matter that much, since I'll be done with the radiation in 3 more treatments ending Wednesday, June 13. After that, it's into my resting period until surgery on July 17.
I see my radiation oncologist every Wednesday, just to check in and see how things are going. The technicians take plain X-rays the day before I see her, so that she can see if things are going as planned. So far, I'm doing swimmingly. I haven't had any problems with excessive fatigue (except when I put in 10 busy hours at work disciplining kids, running Cub Scout programs, and dealing with an accident involving the bookmobile, all at the same time), which was one concern the doctors suggested I might have to deal with. I have developed some irritation under my left armpit, largely due to the loss of my armpit hair from the radiation. I've switched to the Biafine cream, and it works well. It is like having a type of sunburn, in that it's tender to the touch. As it's always resting on my side (unless I raise my arm, which I do frequently), it's hard to keep it from rubbing. Put in perspective, it's a minor annoyance.
The radiation oncologist was surprised at how good the rest of my irradiated skin looked. When I told her that I had finished 4 of my 5 weeks of treatment, she seemed surprised and said that in that case my skin looked extremely good. I figure that if I keep up with the cream, the underarm irritation will subside greatly by the time of the surgery.
And so I'm coming down the home stretch of Phase 1, as I've come to think of it. Three more days. Truthfully, I'll miss the people I've met at the treatment center - it's been a pleasant way to start my days. But Phase 2 (rest) looms, and then Phase 3, surgery. Phase 4 is rehabilitation, which will probably be the toughest part of the entire process. Mentally, I feel ready for all the phases - the only way out of them is by going through them, so bring them on and I'll deal with what I have to deal with. It could be kind of fun, and it certainly will be an experience I'll never forget!
I see my radiation oncologist every Wednesday, just to check in and see how things are going. The technicians take plain X-rays the day before I see her, so that she can see if things are going as planned. So far, I'm doing swimmingly. I haven't had any problems with excessive fatigue (except when I put in 10 busy hours at work disciplining kids, running Cub Scout programs, and dealing with an accident involving the bookmobile, all at the same time), which was one concern the doctors suggested I might have to deal with. I have developed some irritation under my left armpit, largely due to the loss of my armpit hair from the radiation. I've switched to the Biafine cream, and it works well. It is like having a type of sunburn, in that it's tender to the touch. As it's always resting on my side (unless I raise my arm, which I do frequently), it's hard to keep it from rubbing. Put in perspective, it's a minor annoyance.
The radiation oncologist was surprised at how good the rest of my irradiated skin looked. When I told her that I had finished 4 of my 5 weeks of treatment, she seemed surprised and said that in that case my skin looked extremely good. I figure that if I keep up with the cream, the underarm irritation will subside greatly by the time of the surgery.
And so I'm coming down the home stretch of Phase 1, as I've come to think of it. Three more days. Truthfully, I'll miss the people I've met at the treatment center - it's been a pleasant way to start my days. But Phase 2 (rest) looms, and then Phase 3, surgery. Phase 4 is rehabilitation, which will probably be the toughest part of the entire process. Mentally, I feel ready for all the phases - the only way out of them is by going through them, so bring them on and I'll deal with what I have to deal with. It could be kind of fun, and it certainly will be an experience I'll never forget!
Monday, June 4, 2007
Big Arm Birthday!
With 7 treatments left in my radiation therapy, today I'm celebrating my 52nd birthday. A very happy day, all in all. Really, I wouldn't trade in a day of my life to get out of experiencing what I'm experiencing now. You may ask why, given that I get irradiated 5 days a week, have a tricky surgery looming, and don't have the cancer-free body I did a year ago.
The answer is very simple - I view my life as a wonderful and wonder-filled gift. Every day I find myself learning something new, exploring new possibilities, moving ahead. If boulders roll in my way, it just means I have to find a way around them, they are just a part of the grand journey through life. And it is this experience of the grand journey, which is my life, with all its ups and downs, that so enthralls me and fills me with gratitude for being able to experience exactly what I have experienced to this day.
For lots of people, each day may seem to start the same way (waking, bathing, coffee, work, etc.), but if I truly pay attention, I can't help but notice the fluctuations from the seemingly normal routine. Have you noticed (if you're up early enough to hear them) what types of bird songs you hear early each morning - are they always the same? The color of gray or blue of the sky - how are they different every day? The quality of the light coming through you windows - bright, muted, nonexistent? The coolness or mugginess of the air? The state of your mind and your mood upon awakening? The other sounds your house makes as you move about your morning routine (the creaking of steps, the opening of doors, the running water in the bathroom and kitchen)? These and a hundred other things, taken collectively, may at first seem like the same thing, day after day. When looked at more closely, they are never the same two days in a row. The question is - can you hone your ears, your eyes, your sensibilities, to experience them as new every day?
That's what I've worked on for years, learning to pay attention to the people and places of this world as if I had never experienced them before. It's very hard to take for granted something or someone you've never met before. This newness makes you see things with a refreshed perspective. And it's only because of all the experiences in my life, happy and sad, uplifting and depressing, that I have come to this point of being able to work in the world this way. So I am very happy and grateful to have had exactly this life. I look forward to many more birthdays exploring the amazements to be found living life with this kind of awareness. So here's to a very happy birthday as I move, day by amazing day, towards my next birthday.
The answer is very simple - I view my life as a wonderful and wonder-filled gift. Every day I find myself learning something new, exploring new possibilities, moving ahead. If boulders roll in my way, it just means I have to find a way around them, they are just a part of the grand journey through life. And it is this experience of the grand journey, which is my life, with all its ups and downs, that so enthralls me and fills me with gratitude for being able to experience exactly what I have experienced to this day.
For lots of people, each day may seem to start the same way (waking, bathing, coffee, work, etc.), but if I truly pay attention, I can't help but notice the fluctuations from the seemingly normal routine. Have you noticed (if you're up early enough to hear them) what types of bird songs you hear early each morning - are they always the same? The color of gray or blue of the sky - how are they different every day? The quality of the light coming through you windows - bright, muted, nonexistent? The coolness or mugginess of the air? The state of your mind and your mood upon awakening? The other sounds your house makes as you move about your morning routine (the creaking of steps, the opening of doors, the running water in the bathroom and kitchen)? These and a hundred other things, taken collectively, may at first seem like the same thing, day after day. When looked at more closely, they are never the same two days in a row. The question is - can you hone your ears, your eyes, your sensibilities, to experience them as new every day?
That's what I've worked on for years, learning to pay attention to the people and places of this world as if I had never experienced them before. It's very hard to take for granted something or someone you've never met before. This newness makes you see things with a refreshed perspective. And it's only because of all the experiences in my life, happy and sad, uplifting and depressing, that I have come to this point of being able to work in the world this way. So I am very happy and grateful to have had exactly this life. I look forward to many more birthdays exploring the amazements to be found living life with this kind of awareness. So here's to a very happy birthday as I move, day by amazing day, towards my next birthday.
Saturday, June 2, 2007
Do You Have Anything in a Red?
As I come down the home stretch with my radiation treatments, the repetitiveness of the daily process leads me to look for less obvious items of interest. The one I'm particularly amused by these days is the ongoing change of colors used to mark my arm for proper alignment during treatment. These "registration marks" help the technicians to place my arm in exactly the same position repeatably, which is fairly crucial to getting a good result. To that end, when I had my fitting for my mold, the technicians spent a great deal of time making sure all the little details were taken care of, tweaking my position, cradling the mold while the foam inside set to the proper consistency, and taking CT scans to assure all was perfect. This procedure cost over $3000 (at least that's what the bill said - my portion came to a tad over $55, thankfully). They then marked my arm with (supposedly) permanent marker, which they covered with small, clear, plastic adhesive patches, so that when I had my simulation 9 days later the technicians would have no problem getting me in the same position. The color used that day was purple.
Within 4 days, the plastic patches began to "wiggle", as I've taken to calling it. From normal bodily movements and the usual wear and tear (like showering or high heat and humidity), the adhesive begins to get degraded, and the patches start to pucker up, which, of course, moves the position of the lines. In my case, 2 of the patches were in extreme danger of falling off completely the day before I was to take a 4 day trip. The fine folks at Greenspring re-patched me, but when I came in for my simulation on May 8, they began to relabel me - sort of a fine tuning of the previous marks.
Obviously out of purple markers, they redid a couple of my marks in black. Perhaps they were trying to simulate linear bruises, or they were ardent Ravens fans; whatever the reason, the results were two-toned. Over the course of my next 3 plus weeks of treatment, every one of the marks has had to be redrawn or touched up. At first there was consistency, with the purple marks morphing to black, so that about 10 days ago my marks were uniformly black. However, during the last ten days, the color choice has changed again, to turquoise this time. And the lines they've drawn are freehand and longer than before, so that an inch or so of extra turquoise shows beyond the patch-covered areas in some places. Fortunately, what is permanent on paper turns out to be extremely impermanent on my skin. Just part of the fun of the process. I have to say that I am in no way criticizing the performance of the technicians - we joke about the colors and they have not compromised my treatment at all. According to my doctor the setup and results are just fine. I think I might even miss these little marks when I finish my treatment cycle, which is soon (just 8 more radiation visits to reach my 25). But I'll see if I can squeeze in another color or two before I'm done.
Within 4 days, the plastic patches began to "wiggle", as I've taken to calling it. From normal bodily movements and the usual wear and tear (like showering or high heat and humidity), the adhesive begins to get degraded, and the patches start to pucker up, which, of course, moves the position of the lines. In my case, 2 of the patches were in extreme danger of falling off completely the day before I was to take a 4 day trip. The fine folks at Greenspring re-patched me, but when I came in for my simulation on May 8, they began to relabel me - sort of a fine tuning of the previous marks.
Obviously out of purple markers, they redid a couple of my marks in black. Perhaps they were trying to simulate linear bruises, or they were ardent Ravens fans; whatever the reason, the results were two-toned. Over the course of my next 3 plus weeks of treatment, every one of the marks has had to be redrawn or touched up. At first there was consistency, with the purple marks morphing to black, so that about 10 days ago my marks were uniformly black. However, during the last ten days, the color choice has changed again, to turquoise this time. And the lines they've drawn are freehand and longer than before, so that an inch or so of extra turquoise shows beyond the patch-covered areas in some places. Fortunately, what is permanent on paper turns out to be extremely impermanent on my skin. Just part of the fun of the process. I have to say that I am in no way criticizing the performance of the technicians - we joke about the colors and they have not compromised my treatment at all. According to my doctor the setup and results are just fine. I think I might even miss these little marks when I finish my treatment cycle, which is soon (just 8 more radiation visits to reach my 25). But I'll see if I can squeeze in another color or two before I'm done.
Tuesday, May 29, 2007
The Case of the Itching Underarm
I'm nearing the halfway point in my radiation treatments, and the irritation I was told to expect has begun to manifest itself. The sensation is something like what happens when a spot on your skin stays damp for an extended period of time - you start to chafe. The constant rubbing (due to the location of the tumor, under my arm), coupled with the effects of the radiation, causes an irritation near the top of my armpit, just about at the intersection of the underarm hair. This has led to a rash-like burning and itching. I guess this is what babies deal with when they have diaper rash, and I'm feeling a lot more sympathy for what the toddlers go through!
The treatment is straightforward and simple. I dust the affected area with cornstarch-based powder and use my favorite Body Shop Mango Body Butter. This keeps the area lubricated and absorbs excess moisture. I also have a prescription for Biafine, the standard radiation cream (topical emulsion, to be precise). I haven't ordered it yet, because the irritation really hasn't been too much of a bother to this point. I'll probably fill it next week, though, just to see if it works more effectively than Mango Body Butter, which does a pretty good job at relieving the itching.
I'll see my doctor (the radiation oncologist) tomorrow after treatment, which is the usual course of affairs for Wednesdays. At this juncture there's not that much to report. My energy is still very good, although the recent hot and muggy weather of the Memorial Day weekend found me wanting to just lay around inside. But all in all, things seem to be progressing smoothly, and every day brings me closer to the end of this phase of the journey and closer to the day I'll be rid of the big arm.
The treatment is straightforward and simple. I dust the affected area with cornstarch-based powder and use my favorite Body Shop Mango Body Butter. This keeps the area lubricated and absorbs excess moisture. I also have a prescription for Biafine, the standard radiation cream (topical emulsion, to be precise). I haven't ordered it yet, because the irritation really hasn't been too much of a bother to this point. I'll probably fill it next week, though, just to see if it works more effectively than Mango Body Butter, which does a pretty good job at relieving the itching.
I'll see my doctor (the radiation oncologist) tomorrow after treatment, which is the usual course of affairs for Wednesdays. At this juncture there's not that much to report. My energy is still very good, although the recent hot and muggy weather of the Memorial Day weekend found me wanting to just lay around inside. But all in all, things seem to be progressing smoothly, and every day brings me closer to the end of this phase of the journey and closer to the day I'll be rid of the big arm.
Tuesday, May 22, 2007
Eyes On the Prize
It's been a while since the last post, due to a combination of lack of new news, hectic schedule, and not feeling terribly well. The not feeling well part has nothing to do with the radiation, but more than likely has to do with high pollen counts and a slightly upset stomach. The stomach stuff has been floating around work the last week or so, and a little bit of it seems to have visited my intestinal tract.
The latest news is that my surgery has been scheduled for Tuesday, July 17, at 7:30 am. I've got my pre-op physical and (hopefully) final MRI with contrast on Wednesday, July 11. I have to say I'm ready to have the "lump of my life" residing outside of my body instead of inside of it. I'm just tired of carrying it around. The radiation treatments have become routine, and to this point haven't produced any noticeable fatigue. I see my radiation oncologist every Wednesday after treatment, so tomorrow I'll see her, which coincides with the end of two full weeks of radiation. I just keep telling myself - every day I get one day closer to being rid of this growth. I'm really looking forward to recuperating from the surgery and starting physical therapy. I just feel that I can get back to pretty close to full function after the surgery, even if it proves to be one of the harder things I'll do in my life. Bring it on - my eyes are on the greater prize of a cancer-free arm that does most of what my arm did before.
The folks, both patients and staff, at the Radiation Oncology center are a fun group. There's an unspoken bond between the patients who see each other 5 days a week, a family of hope and shared experience - everyone there lays on the same table and takes radiation in different parts of their bodies. Some are getting chemotherapy at the same time. All are positive and encourage everyone else with their demeanor. Everyone greets each other warmly, wants to know what's going on in your life, trades stories, recipes, whatever comes up in the course of the 10-15 minutes we're in each other's company. The staff join in the fun as they can with processing all the paperwork and managing appointments and dealing with the doctors. A very special confederacy.
Memorial Day weekend is approaching, so I get an extra day off from radiation on Monday the 28th. As I'm off from work as well, I guess it's a day to sleep in.
The latest news is that my surgery has been scheduled for Tuesday, July 17, at 7:30 am. I've got my pre-op physical and (hopefully) final MRI with contrast on Wednesday, July 11. I have to say I'm ready to have the "lump of my life" residing outside of my body instead of inside of it. I'm just tired of carrying it around. The radiation treatments have become routine, and to this point haven't produced any noticeable fatigue. I see my radiation oncologist every Wednesday after treatment, so tomorrow I'll see her, which coincides with the end of two full weeks of radiation. I just keep telling myself - every day I get one day closer to being rid of this growth. I'm really looking forward to recuperating from the surgery and starting physical therapy. I just feel that I can get back to pretty close to full function after the surgery, even if it proves to be one of the harder things I'll do in my life. Bring it on - my eyes are on the greater prize of a cancer-free arm that does most of what my arm did before.
The folks, both patients and staff, at the Radiation Oncology center are a fun group. There's an unspoken bond between the patients who see each other 5 days a week, a family of hope and shared experience - everyone there lays on the same table and takes radiation in different parts of their bodies. Some are getting chemotherapy at the same time. All are positive and encourage everyone else with their demeanor. Everyone greets each other warmly, wants to know what's going on in your life, trades stories, recipes, whatever comes up in the course of the 10-15 minutes we're in each other's company. The staff join in the fun as they can with processing all the paperwork and managing appointments and dealing with the doctors. A very special confederacy.
Memorial Day weekend is approaching, so I get an extra day off from radiation on Monday the 28th. As I'm off from work as well, I guess it's a day to sleep in.
Thursday, May 10, 2007
Can You Say Latissimus Dorsi ?
This morning I met my plastic (reconstructive) surgeon, Dr. Singh. Very tall, very nice, and armed with a credit card sized digital camera (an Exilim). It's most amusing, what with my photographic bent, but every doctor I've met from the Johns Hopkins team has felt a need to take my picture with a little digital camera. More precisely, they want to take a picture of the lump in my left arm, but I think I'm the only person who doesn't have a picture of my lump. Dr. Singh is the only one who has pictures with my radiation alignment marks showing, though, and he also took a shot from behind (rather like the position demonstrated by the friendly muscle mannequin above, except with my left arm held out parallel to the ground).
Dr. Singh explained what he was going to be doing surgically to repair my arm after Dr. Weber removes the tumor, which in my case means removing the majority of my triceps. Once the tumor is removed, a latissimus dorsi muscle (see red area on muscle mannequin), with blood supply and nerves still attached, and a flap of skin will be lifted from my back and rotated into the place where my triceps used to reside. Then the latissimus muscle will be attached to the long bone of the arm (humerus) and will be positioned to approximate the triceps. Lastly, the skin will be sutured and my arm will have been reconstructed.
All told, the total time of my surgery will probably be somewhere around 6-8 hours. After the surgery, Dr. Singh tells me I can expect to be in the hospital for about a week. When I asked him how long it would take me to heal from the surgery, his reply was, "It'll be about two weeks before you feel like a human being again." I asked him if it would be possible to make the Cape May trip I take every year with my family (all 15-17 of us) if the surgery was done in mid-July, as the Cape May vacation starts August 4. His answer was that it may be possible, because Cape May was close enough to Baltimore that I could come back if there were any complications. I asked him if I'd be able to drive, and he said he doubted it, because I'd probably still be on painkillers. He then said that it might not be the best idea to go to Cape May, it might be a little soon in my convalescence. Bummer! But healing is more important, and Cape May isn't going anywhere anytime soon. Maybe next year.
Perhaps I'll try to get a copy of one of the pictures of my arm to post. Until then, you can practice spelling and pronouncing latissimus dorsi.
Wednesday, May 9, 2007
High Beams On
After a traffic tieup that made me 15 minutes late, I made it in for the first treatment. The staff was waiting for me, and I was obviously their last appointment of the day. All told, the treatment took about 10 minutes. Basically, it's just take off my shirt, lay on the table, get positioned in the mold, and then four quick (30 second) bursts of high-energy X-rays from four different angles. My total dosage of radiation is 200 rads (radiation units) per treatment, which is considered low level. Then it's sit up, toss the gown, put on my shirt and see you tomorrow.
They'll be changing my appointment time over the next few days as some earlier slots open up, meaning as other patients finish their course of radiation therapy. Tomorrow I'll be in at 4 pm, and Friday is supposed to be around 1 pm. On Monday, they'll move me up to 9 am, which is more preferable to me from a work standpoint. No more slugging my way through unpredictable rush hour traffic to make appointments, but rather doing a shorter dash from home in the morning on back roads, then heading off to work after rush hour is largely over.
So the first offensive move in the taming of this lump has occured. It feels good to be taking steps against it rather than waiting for the time to come to begin dealing with it. I'm far more comfortable being proactive and doing something to the tumor than I am waiting around for it to do more stuff to me. It's my turn behind the wheel, and I'm going to be driving with my high beams on, courtesy of the radiation staff.
They'll be changing my appointment time over the next few days as some earlier slots open up, meaning as other patients finish their course of radiation therapy. Tomorrow I'll be in at 4 pm, and Friday is supposed to be around 1 pm. On Monday, they'll move me up to 9 am, which is more preferable to me from a work standpoint. No more slugging my way through unpredictable rush hour traffic to make appointments, but rather doing a shorter dash from home in the morning on back roads, then heading off to work after rush hour is largely over.
So the first offensive move in the taming of this lump has occured. It feels good to be taking steps against it rather than waiting for the time to come to begin dealing with it. I'm far more comfortable being proactive and doing something to the tumor than I am waiting around for it to do more stuff to me. It's my turn behind the wheel, and I'm going to be driving with my high beams on, courtesy of the radiation staff.
Tuesday, May 8, 2007
X's Mark the Spots, Ceiling Tile Mazes
This afternoon's session was, per the radiation oncology staff, the longest one I'll have. The session lasted almost an hour and a quarter, instead of 30 minutes, for a number of reasons. They needed to get exact positioning measurements on my arm while it was in the mold (or casting) that they made 9 days ago. Because I have to have my arm palm up at a strange angle while in the mold, they had to position me off to one side of the table under the X-ray machine that will determine the positioning marks. I had to stick my right thumb in my belt loop to keep my right arm from dangling off the table. This makes me look like I'm preparing to do the children's song "I'm A Little Teapot", which I tell the staff. They laugh and decide for the duration of my radiation therapy they're going to call me "Little Teapot".
Unfortunately, the strange position of my arm makes it very difficult to get the machine positioned correctly. After a couple of X-rays, the head technician, a nice man named Paul, comes back in and tells me that rather than take too many X-rays trying to get things right, they're going to walk me down the hall to the fluoroscope, which will give them the positioning data. So I parade down to the fluoroscope room, where it takes about 40 minutes to get everything set and the pictures taken. Periodically the team comes in and marks me with black markers that they cover with clear tape. They also mark my casting so that they can line me up exactly and quickly each time I come back. Then it was back to the X-ray room where they could take the necessary X-rays and fine tune the marks on my body and casting, which took about another 20-25 minutes. When this was done, I was set to start the actual radiation treatments, which begin tomorrow at 4:30 pm.
It's interesting walking into large rooms dominated by massive machines with tables attached to them, all the while knowing that these machines will shortly begin doing whatever it is they do to you. It feels a bit like being in a combination of a manufacturing shop and a sci-fi movie - steel tables, computer-controlled machinery that whirrs and buzzes and flashes and rotates, staff and technicians moving about calling out numbers, repositioning you remotely, while you just lay there and take it. They do have really great ceiling tiles, though. Several of them have complicated mazes drawn on them. As it was explained to me, people getting treated often have to lie on their backs for extended periods of time and get bored, so they've gotten the maze ceiling tiles so folks have something to occupy their minds while they're staring at the ceiling.
All in all, not a bad start. I have to give kudos to the staff at the radiation center, they were all great, funny, and obviously professionally adept at their jobs. They'll be with me for 25 sessions. Perhaps when I'm done I'll give them a teapot! I hope Paul, Marsha, Judy, and Tammy are ready to have some fun.
Unfortunately, the strange position of my arm makes it very difficult to get the machine positioned correctly. After a couple of X-rays, the head technician, a nice man named Paul, comes back in and tells me that rather than take too many X-rays trying to get things right, they're going to walk me down the hall to the fluoroscope, which will give them the positioning data. So I parade down to the fluoroscope room, where it takes about 40 minutes to get everything set and the pictures taken. Periodically the team comes in and marks me with black markers that they cover with clear tape. They also mark my casting so that they can line me up exactly and quickly each time I come back. Then it was back to the X-ray room where they could take the necessary X-rays and fine tune the marks on my body and casting, which took about another 20-25 minutes. When this was done, I was set to start the actual radiation treatments, which begin tomorrow at 4:30 pm.
It's interesting walking into large rooms dominated by massive machines with tables attached to them, all the while knowing that these machines will shortly begin doing whatever it is they do to you. It feels a bit like being in a combination of a manufacturing shop and a sci-fi movie - steel tables, computer-controlled machinery that whirrs and buzzes and flashes and rotates, staff and technicians moving about calling out numbers, repositioning you remotely, while you just lay there and take it. They do have really great ceiling tiles, though. Several of them have complicated mazes drawn on them. As it was explained to me, people getting treated often have to lie on their backs for extended periods of time and get bored, so they've gotten the maze ceiling tiles so folks have something to occupy their minds while they're staring at the ceiling.
All in all, not a bad start. I have to give kudos to the staff at the radiation center, they were all great, funny, and obviously professionally adept at their jobs. They'll be with me for 25 sessions. Perhaps when I'm done I'll give them a teapot! I hope Paul, Marsha, Judy, and Tammy are ready to have some fun.
Beginnings - Let's Get It On!!
Hi, and welcome to my newly-created exercise in mass communication and full disclosure. I'm writing this post just before heading to my initial trip for radiation. Today is just to make sure everything is aligned correctly, and I get my permanent tattoos as well. The tattoos will make sure that they focus the radiation on just the right spot, and nothing else. Hence the title of this posting, "Beginnings - Let's Get It On!!" (apologies to Marvin Gaye)
With all the goings on relative to the fibrosarcoma in my arm, lots of my relatives and friends have been wanting news as to my condition, the progress of my treatment, etc. While it's been fun chatting on the phone with all of you these last few weeks, and I will continue to talk to you on the phone, I found myself wanting a more efficient and effective means of communicating with everyone. You can blame my dear sister Lora, the Rev. Chapman, for the creation of the blog (short for web log for those of you new to "blogging"), although she had no idea that she inspired this. Quite an indirect occurrence, springing from her habit of keeping a notebook of my medical journey.
When she went with me to Greenspring Station and her car broke down, I called her after my appointment, to fill her in on what transpired so that she could keep the notebook up to date. I was also spending a fair amount of time retelling my doctoral escapades to various family members, friends, and colleagues at work. Just this past week I was in Ocean City at a library conference, and I attended a seminar on blogging and podcasting (I may be podcasting to you sooner than you think!), and it clicked that starting a blog would be the ideal way to keep all concerned parties appraised simultaneously. Not only will the blog be a means for me to keep you posted on how my medical procedures are going, but it gives you the opportunity to send back comments, good wishes, and any other observations you feel fit to share. So it is interactive. And I figure that even after the surgery I can just fire up a laptop, sit back with a beer, and share the process with you.
A couple of ground rules for replies. First, no cursing (It's the librarian in me that had to say that)! Second, feel free to say whatever you want to say, it's all appreciated. Third, you'll be able to read and respond to what other visitors to the blog have said. Fourth, forgive me if every now and then I post another photograph of some bird or seashell or landscape or rock or something without a person in it, it's just what I do, okay? ;-)
So there you have it. Feel free to join in the experiment, the fun, and the opportunity of this, my blog about my cancer treatment journey and recovery. Make no mistake, I will recover from this, I'm in incredibly capable hands (God's, surgeons, physical therapists, plastic surgeons, bill collectors ;-) ) and surrounded my unbelievably caring people - you, my family and friends and co-workers. So come on in, sit a spell, and contribute to this blog, a little piece of virtual reality that I call Steve's Big Arm News.
With all the goings on relative to the fibrosarcoma in my arm, lots of my relatives and friends have been wanting news as to my condition, the progress of my treatment, etc. While it's been fun chatting on the phone with all of you these last few weeks, and I will continue to talk to you on the phone, I found myself wanting a more efficient and effective means of communicating with everyone. You can blame my dear sister Lora, the Rev. Chapman, for the creation of the blog (short for web log for those of you new to "blogging"), although she had no idea that she inspired this. Quite an indirect occurrence, springing from her habit of keeping a notebook of my medical journey.
When she went with me to Greenspring Station and her car broke down, I called her after my appointment, to fill her in on what transpired so that she could keep the notebook up to date. I was also spending a fair amount of time retelling my doctoral escapades to various family members, friends, and colleagues at work. Just this past week I was in Ocean City at a library conference, and I attended a seminar on blogging and podcasting (I may be podcasting to you sooner than you think!), and it clicked that starting a blog would be the ideal way to keep all concerned parties appraised simultaneously. Not only will the blog be a means for me to keep you posted on how my medical procedures are going, but it gives you the opportunity to send back comments, good wishes, and any other observations you feel fit to share. So it is interactive. And I figure that even after the surgery I can just fire up a laptop, sit back with a beer, and share the process with you.
A couple of ground rules for replies. First, no cursing (It's the librarian in me that had to say that)! Second, feel free to say whatever you want to say, it's all appreciated. Third, you'll be able to read and respond to what other visitors to the blog have said. Fourth, forgive me if every now and then I post another photograph of some bird or seashell or landscape or rock or something without a person in it, it's just what I do, okay? ;-)
So there you have it. Feel free to join in the experiment, the fun, and the opportunity of this, my blog about my cancer treatment journey and recovery. Make no mistake, I will recover from this, I'm in incredibly capable hands (God's, surgeons, physical therapists, plastic surgeons, bill collectors ;-) ) and surrounded my unbelievably caring people - you, my family and friends and co-workers. So come on in, sit a spell, and contribute to this blog, a little piece of virtual reality that I call Steve's Big Arm News.
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