Long Overdue Update

And you thought I wouldn't come back.

It's now almost March of 2008, and I have had a sensational recovery over the last 8 months. Through a lot of hard work and the dedication of many capable and amazing therapists and doctors, I now can do just about everything I did before the operation. The doctors were able to keep one of the three parts of my triceps after removing the tumor, so my arm is considerably stronger than they thought it would be. There is very little nerve impairment in my left hand - none in the fingers and wrist, just a minor and periodic "fuzziness" in my palm that I'm told will eventually go away. I have full extension of the arm and full strength and dexterity in the hand. The incisions have all healed nicely, and I can lift heavy objects and crawl in the mud if I care to!

The physical therapy started in September of 2007 and ended in late November. I had 24 1 hour sessions, plus did exercises on my own at home. As I expected and mused about earlier, this Phase (the fourth) was one filled with work, discipline, and great reward. I just felt that if I put in the work in rehab, all would come out well, and this was the case. I "pedaled" bikes with my arms, lifted weights, used rubber bands for tension and pulleys to regain strength and flexibility. My favorite part of rehab, though, was the ultrasound massages that started every treatment session. These, besides feeling sensational, helped to break up the scar tissue at the incision sites and reduce the scarring. Most importantly, my therapist, Dorlah, was so funny and upbeat, we had a regular laugh riot most days! She was so supportive of my quest to get back the full use of my arm, and she did everything in her power to faciltate my recovery. She even liked my photos so much she bought 3 of them for her husband as Christmas presents! She heads back to Michigan (her home state) in a couple of weeks, to be reunited with her husband.

These days I'm back to exercising regularly, to knock off some of the weight I gained during my recovery period. And I'm taking lots of photographs again. I went back to Cape May in early October of last year, to do a week of photography that I couldn't manage when I visited in August. I went crazy, and took over 1300 shots in that week! Mostly birds, butterflies, beach stuff, and sunsets. It was heaven, and my reward after everything I'd been through. Here are two of my favorites from that time, both of snowy egrets.


snowy egret at Lake Lily


early morning gathering, Cape May State Park


So now it's late February, it's lately been cold, rainy, sleety, windy, and I'm happier than I've been in a long time. I can even put on a jacket without my left arm being too big to fit! I just love a happy ending. And I'm truly grateful for this gift.

On the Mend, Headed To the Beach

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.

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.

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!

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.

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!

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.