Larry's Journal
January 14, 2003
The battle is well and truly joined. I have new weapons, new attendants to assist me to use them and a very important new ally in my growing war camp.
My day started with being fitted for my fluoride tray for my upper teeth. This will help me stave off decay and radiation effects. Five minutes an evening should do nicely, and I am NOT eager to lose any more teeth. To his credit, the oral surgeon remains on my short list of those earning the title “Painless”.
Radiation is well underway. We have managed two of the thirty-three sessions without issue. The first, fitting and planning, was a bit tedious but survivable. The techs and I share a no-nonsense but mutual respectful approach and I like them. I think this is very important, as we will see a lot of each other.
The mask…I will learn to hate that damned thing, I am sure. It started as a piece of plastic mesh that was moistened and heated then stretched to fit my hyper-extended face and neck. Its purpose is to immobilize my noggin so they only zap the intended areas of jaw and neck. Were I to fidget as much as I am prone in that uncomfortable position, some of these killer rays may go awry. The mask is physically affixed to the table assuring that I stay where they want me. I do, however, get smacked on the ankle now and then when I cross my ankles.
To keep my tongue still and flat to the floor of my mouth, they had me hold a large plastic tongue depressor, properly notched for my teeth, which is used under the mask. The rub was, that was fitted when I had lower teeth…changing things a bit. By creative use of my lips and gums, we are managing this and they’ve allowed me a hole for eyes and mouth allowing me to yank it should the need arise. I am, as you may recall a puker and would really dislike letting that happen while strapped on my back. No problems to date.
Today was my first, and bloody long, chemotherapy. It started at 10 AM and lasted until past 2. I was very tired of that treatment bay before escaping. I had taken a journal pad and pen with me, only to discover the pen was dry. Two days in a row…what a buffoon! You’d think I’d test them?
While the anti-nausea medication is probably still in effect and offering false hope, I feel fine. In a few minutes, I’ll fix us a quiche for dinner. I actually am hungry and if I feel anything, it is cold and a bit depressed. It is 8 degrees outside and my bald noggin was not well timed! Fortunately, I look stunning in a stocking cap.
The needle used for therapy is very fine thus sliding in like a warm knife into butter. Well, that’s what my nurse said to say. It’s a needle…I rest my case. The pump was filling me up so fast I took it for four walks to the men’s room to offset the fluid level in my personal tank. 3.0 liters pumped in, 1.9 out (yes, it’s measured) and more where that came from. Excuse me, I’ll be right back.
Much better, thank you.
Side effects I am to watch for? Nausea, vomiting the ever-popular pooping in your pants. I think I’d notice. I am to call if the (very expensive!) medication does not contain it. On the other hand, what’s a fair price to NOT poop your pants? Got a long and somewhat frightening lecture about guarding against infections since my resistance is low. I resisted the temptation to say…”Um, I have cancer, your point is…” I am getting better behaved. Kay is a very good influence. But she is tiring of my on-going references to things proctologic so I am trying to avoid those touchy areas.
Once again, it is GOOD to live where I do. When the radiology team wanted to fatter me up, I whined about it to my Aussie oncologist. He made a great observation. The Cancer Center at the University has a well-published nutritionist on staff and he put me in touch with her. Donna L. Weihoffen, RD, MS even has her Easy-to Swallow Easy-to-Chew Cookbook available through
OCF – see the Patient Products section, or www.oralcancerfoundation.org/patients_products.htm. Upon calling her I found her eager to help. We scheduled a lunch meeting the following week. In the interim, I picked up copy of the cookbook at the hospital gift shop and am very impressed. I may fix the Ham Loaf this evening and the spinach soufflé’ is delicious!
Lunch at the Hospital cafeteria with Donna felt awkward as I worried about my choices being evaluated too closely. It was a false concern as Donna is great company and a better source of information. The closest I got to criticism was “If you can get that down, you’re doing very well without your lower teeth.” The chicken chop suey and rice, coffee and a hard roll got her approval. The hard roll was wishful thinking, of course, but I did use it to wipe up some of the sauce from the entrée.
Donna was great! She not only agrees that I should not need to gain weight, but thought maintaining or a slight loss would be okay. I told her my goal was dropping 20 of my 203 starting pounds, to which she agreed as long as we do it in a healthy fashion, eliminating fat, not muscle. We discussed food likes, trick, supplements (Boost, not Ensure), cooking oils and our mutual love of food. She thinks I’ll do fine, and I really will enjoy working with her. In fact, she has already accepted and modified one of my recipes for her local TV show. Everyone needs an ego boost like that now and then! Donna is a delightful addition to my care team!
Now, how do I get all these folks to stay in step? I’ve gotten much better at asking questions, demanding consults between physicians and even double check what they are about to pump into me next! Nothing like having a little bone removed to get you to approach these folks differently!
The conflict I currently want to resolve is simple. Radiation and Oncology want me to “take it easy” – especially in guarding against wounds/infections. Nutrition and I want to see me exercise more, preferably in structured and supervised environment. I need to work on the Docs to not only agree but prescribe a workout routine at the hospitals state-of-the-art gym. It is as amazing to me as others that I want this. I fight our dog Sunny Day for the sofa every evening, and lose!
I was once reasonably addicted to power walking and a universal gym…it would do me no harm to reconnect with that good habit. Doing so in a class A environment with great supervision might make quite the difference.
February 4, 2003
I had one of my early-morning revelations at 4 AM. Not until this morning did I realize how emasculating my cancer has been.
Admittedly, some of this is self-induced since I have chosen not to try to work during my radiation and chemotherapy. Some days I could not work since therapy takes so long. Most days I could work, but not enough to make much difference economically. Most would be very difficult at best, but many do I’m told. I don’t know how.
Cancer has reduced me to being completely without external value. My days are completely empty save for what I can insert, and that isn’t much nor very often.
Kay is clearly tired of only hearing me whine about my pain and how my therapy session went or what the Doc had to say. She really rarely asks and expresses no interest in going along. I think she is very tired of being my “one who pays attention”. She abides my writing attempts (I’m working on a collection of short stories about my childhood). She tries to ignore my fantasy shopping for fear I will actually push the “BUY” button on the website. She listens to the vacation ideas I have with vacant eyes. We had agreed to take one after I’m done with radiation.
She is showing increasing signs of being tired of supporting me. I don’t blame her, but I am more tired of being supported. I have no other options. My car has not sold…the used car market is in the pits locally, new car dealers are too hungry for used ones to be appealing, I guess. This saddles her with the entire household (my contribution to a now-vacant joint account was formerly $875), my health insurance ($290) and my car ($265). I hardly offer enough benefit to her to justify the additional $1,430 in carrying costs. I’m in her debt in so many ways, as very deeply. I don’t know when repayment can even begin.
I am no longer able to buy the coffeepot I want when our old one gives up the ghost. I can’t replace my increasingly balky six-year-old printer, which is getting quite a workout. I was at Walgreen’s the other day. I needed some stool softener, Boost and a greeting card. The purchase came to just over seventeen dollars. Both my debit and credit card were declined. I left the store in shame, having four bucks in my pocket.
My income now is a fixed SSI check of just under $600 a month. In better times, I considered $20 a day to be my “walking around” pocket money. An allowance of $20 a day isn’t much. In June it will increase when my permanent pension kicks in. Then my daily allowance will be nearly $60, and I will be allowed to earn another $800 per month. I try not to think of them as welfare checks.
I’d like to get back to the point where I feel a bit more of a partner to Kay. This change in roles from me being the strong one has been hard on me. I’m no longer empowered enough to do much more than decide what I want to force myself to eat for dinner. She may or may not join me. What I can eat often does not appeal to her. All I’m trying to do is get my 2000 calories and 100 Mg of protein, how I get it matters not since I really don’t taste anything.
My attempts to take over some household duties are failures and not appreciated. I think they are actually resented, in that her turf is being usurped. All I want is some sense of contribution. Web surfing, writing and Free Cell all day doesn’t contribute much nor build any self-worth.
We’d chatted in November as we came into the second surgery, recovery, dental work, and therapies. We agreed that my only job was to take this battle seriously, fight hard and get well. I feel I have done all I can in those areas and continue to stay the warrior.
My boredom and depression make me less fun to be with than I have been. My energy level is highest in the mornings while she is at work…in the evening; I doze off in my recliner or simply go to bed. I rarely see 10 PM and 9 is not overly common. Simply put, I am lousy to no company at all.
I often worry that she want to break up with me. I fully understand where that concern is coming from. I’d break up with myself if it were an option; this is a lousy way to live. I’ll finish this round of therapy, but a future recurrence may not find any will to fight left in me.February 18, 2003
Back in my favorite window seat at chemotherapy. Today’s visit is my last. I will actually miss this place and the caregivers it houses.
Radiation, on the other hand, looms another 8 sessions. Oh dear God, how I want those behind me. That walk in the park is over and the chasm that the path led to is deep.
I awoke this morning to the taste of blood. Glancing at my tongue showed two new lesions, each oozing. Yesterday I did a quick visual analysis of my mouth…as far as I could until I shrunk from the sight. Once I discovered the line of white tissue along the base of the tongue, looking not unlike oatmeal or rice, I lost interest. My mouth feels like it is on fire all the time.
To add irritation to injury, I am now dealing with a sunburn-like area on each shoulder. Where my neck skin turns a 90-degree angle to become my shoulder, I have begun to itch, peel and be very sore. All my sundry creams and lotions help only for moments. I’m left with about two inches of lizard-like scaling that is a constant irritant.
My good intentions about my diet are beginning to collapse…it is hard to force-feed yourself once the pain become unbearable when combined with lousy to bad flavor. Anything with acid is like molten fire…red tomato sauced dishes are out! Citrus fruits are history.
Fortunately eggs, oatmeal, ice cream and Boost have kept me from the dreaded and threatened feeding tube. I’m currently at 191 pounds and intend to stay very near that. It is time to revisit soups and find a flavor I can enjoy. Between what I can eat and adding some soup I should be able to hold my own.
Kay and I have had many talks of late and the relationship is on the mend. We have agreed that what we have is too valuable to throw away. We are even shopping for a home.
Today I started a new layer of radiation, giving me two sessions in each of the seven remaining sessions to be doubled up.
As I understand it this “boost” layer is simply supplemental for the scar tissue and the area on either side of my spine. It is a lower dosage and non-penetrating ray intended to care for any residual cancer cells lurking in the scar tissue from my earlier surgeries.
All of my bravado of the earlier weeks has truly evaporated. I spend at least 12 hours a day in bed, if not sound asleep. My energy level is nearly invisible and my attitude waivers from indifferent to awful. This morning, I told Kay I might be forced to wimp out on this treatment…I hope I don’t but it could happen. I will take all I can bear, but can bear little more at the pace of increase. Each day is considerably worse than the last.
As I get infused, Donna my favorite dietician drops in. She shares a veritable vat of Additions, the new food supplement from Nestle’s. Each 2 and 1/3rd tablespoon scoop adds 100 calories and 6 grams of protein to the food you mix it with…quite a bonus. She also brought along a high protein milkshake from the University’s dairy and a box of additive packed fruit juice.
Throughout my session, nurses have stopped by to say “hello”, all calling me by name. Each wishes me well and we joke about hoping to never see each other again. My favorite pharmacist, Joe, stops in to see if I need anything and we arrange for me to pick up some fresh pills the following morning as I see the radiotherapy people.
All this activity causes a visitor in the bay opposite my own to glance my way and as a question. “Who are you?” he says with a smile. My response is simple – “just a guy who knows how to suck up to those that matter.” We chuckle together as Debbie, who overheard the exchange pipes in “You got that right, Larry!”
I will miss these people. They sincerely cared about me. I will not miss four hours of cold and boring. I will not miss the foot-long three-inch wide deep purple bruises from the infusion site. I will not miss feeling queasy for a few days as the Cisplatin works its way through my system.
But the memories will be easy to keep near and dear of the people. As I leave they present me with a bottle of sparkling grape juice “champagne” and a diploma that reads as follows:
This certifies that:
Larry Sharp has successfully completed
6 cycles of Cisplatin treatments
and has honorably
fulfilled all requirements, including
Cheerfulness, Great Attitude,
and Excellent Attendance.
In Witness whereof
We have affixed our Signatures
The diploma is signed by my oncologist, pharmacist and four nurses. It will be framed and is one of my prouder accomplishments.
February 19, 2003
I finally connect with Scott, my radiologist. Expecting a lecture for having lost too much weight (5 pounds) last week, I get a surprising amount of support – once he looks in my mouth. I had just told him how uncomfortable I was and that I was getting cold feet about going on.
“Let’s have a look,” he says as he pops on the light and swivels down his mirror. There is an audible “gulp” and he starts scrambling through file notes “what are you taking for pain again?” I remind him that we just switched to 10 Mg of Oxycontin every 12 hours, supplemented by a teaspoon of Roxicodone every two hours “as needed” for pain.
He increases my dosage of Oxycontin to 30 Mg every twelve hours. It seems we’d been asking me to be more stoic than might be appropriate – and I was not holding out well as a result.
I get a lot of his time, all full of praise at how well I have battled this process, how pleased he is with my keeping the faith on my weight. He declares me a “warrior” and surely has no idea how much that means to me compared to others. I am genuinely proud…perhaps falsely, but my ego really needs a boost right now.
Later in the morning we meet with my former surgeon. Patient Relations and a Patients’ Rights advocate have arranged a conference to provide closure on why I terminated my relationship with him.
I present him with the following explanation:
“I appreciate the time each of you has taken from your normal day to discuss my concerns about the quality of care I have received at the Hospital.
Doctor, I have every confidence that you are a technically brilliant surgeon. I also have observed that you work long and hard to do as much good as possible, and have told you so.
But I felt the need to change physicians for one basic reason – I felt unable to communicate with you. You gave me little, if any time to question, research or express concern. Every potential negative side effect of the two surgeries you performed on me was explained on our way to the operating room, or waiting for one to free up. You got angry with me when I asked too many questions and you said I was 'brow beating' you and that I am 'contentious' -- which didn't cause me to feel like I could talk with you.
Prior to the second surgery, here at the hospital in November, you assured me that no bone would be removed from my jaw. As we discussed my admittedly unrealistic fear of bone being removed, you assured me “We can save that for another day or wake you up if it looks like it needs to be done.”
On my consent form, I specifically forbade removing any bone. No one questioned this or asked why. I feel as though the intent was to get the form signed, not to make me a participant in the decision making process. Since I never had the opportunity to meet with you and discuss my concerns and the possible risk and benefits of the surgery to begin with; I feel that I could not possibly have given an informed consent for the surgery.
Then, during the surgery, you opted to remove a small piece of my jaw for biopsy purposes. By this time, I trusted you so little that I felt like you did that despite your understanding that I didn't want you to. I don't know what is true about that -- but I know that it felt really bad to me. I did not feel you had an interest in informing my consent or respecting the need for it.
Doctor, once you have lost a patient’s faith and trust, you have little left to offer them.
It is my hope that you will take my feedback in the spirit in which it is intended – namely to give you information on the ways our interaction did not work well for me – and perhaps that information will help you in your interactions with future patients.
Again, thank you for your time.
I will give the man this, he took it well and apologized indicating this was a meaningful meeting for him. I hope it did help him…that was my intent. Given different circumstances, he and I could have been good friends. Frankly, I will miss him.
That evening I try the Additions product – and don’t follow directions (Moi?) resulting in a mess of some significance. It worked great – eventually. Be prepared for it to turn your food white, by the way. Coffee looks like you use cream, but beyond that, it is tasteless and my weight is holding steady!