Welcome to Being Cancer Network, a resource for bloggers & survivors.
- Access to over 1500 personal cancer blogs (new sites added weekly)
- I am a two-time leukemia and stem cell transplant survivor, pancreas cancer survivor, and now head and neck cancer survivor. I have been an oncology nurse for 27years. This website is meant to help cancer bloggers connect with each other.
( If you are experiencing any problems, please contact me off-blog. email@example.com OR firstname.lastname@example.org. Dennis)
I have been away too long and I apologize. This is the longest I have been away from the blog since I started it in 2008. My Mail program on my Mac has been on the fritz since April. I was on the phone with Apple Support yesterday when the program came back to life, at least for the Being Cancer address. I was shocked to find that several dozen folks had left messages and requests, including a family in Greece seeking advice on treating my original illness, T-cell prolymphocytic leukemia. I felt a sense of guilt as I always try to communicate with fellow T-PLL patients, as there is so little information out there on this rare cancer.
I was cancelled at the hospital today so I plan to use the time to go thru my correspondence and subsequently highlight some of the new blogs that have been created recently. I was gratified that, even in my absence, people have found Being Cancer Network to be a valuable tool. So I will be adding new blogs and gradually weeding out some of those that have been discontinued. As there are over 1500, it would take at least 75 hours to go thru them all. If you know of any software that culls inactive links, please let me know.
Briefly my own life is continuing on. A repeat CT of my abdomen showed no further sign of pancreatic cancer. A recent head CT showed no sign of additional parotid tumor. The site has healed well although the right side of my face is still numb. Good news is I no longer have to shave on that side of my face. I am due for my annual visit to my bone marrow transplant doctor but I expect no bad news there. I still work my basic part-time schedule in the bone marrow transplant clinic but have changed my status from regular to supplemental. This means I receive no benefits other than hourly wage but I can take off whenever and as often as I want.
When my wife’s parents died, she and some of her siblings bought the vacation home (trailer) in a retirement community in Estero, Florida. After my last cancer diagnosis last spring I bought a sailboat and we are keeping it down there for sailing in Charlotte Harbor. I will be 68 this summer and intend to start actively enjoying these years while I still can, especially with two new diagnoses of cancer in the past two years. With my reduced commitment at work I should have more time to spend on this blog site.
I got to ring the brass bell in the lobby of the radiation center last Wednesday. I rang three times as is the custom. Except for that celebratory ritual, the day was a bit anti-climatic. This whole cancer episode has been undramatic, especially when compared to my previous battles with the “Beast”. I never felt as threatened, as scared, as debilitated, as sick with this parotid cancer as I did with my leukemia. This is not meant to take away from other head and neck cancer survivors for I know from experience that those can be among the most gruesome and distressing of cancers
I continue, I guess to be lucky in my various encounters with cancer. We caught this early. It was small in size and had not spread to my lymph nodes. It is possible that the surgeon was able to resect literally all of my cancer. Radiation was just a mopping up exercise, an extra measure, giving me confidence that the 20-30% chance of reoccurence might not apply to me. And since the tumor was small and no lymph nodes were involved, the target area for radiation was small, the beam penetration shallow.
I had been prepared for the worst – agonizing pain in my throat, being unable to swallow anything, dangerous, uncomfortable sores all over my mouth. In these cases a tube is surgically placed into the abdomen, passing thru directly to the stomach with subsequent weight loss and progressive weakness.
My throat started to hurt during the second week of treatment so I was quite sure I was heading for a long and disagreeable experience. But that pain got no worse. I never developed the mouth sores. The skin around my right cheek and ear did turn a purplish-black color. My skin broke open and bled a little throughout the day. There was an oily yellowish discharge, followed by crusting. I ruined several pillow cases. But as ugly as it looked, it provoked along minor discomfort. In fact much of the area is still numb from surgery.
For the past couple of weeks I have been putting a complicated dressing on the area. I start with some protective cream, Silvadine, followed by a moist petrolatum dressing, covered with gauze, a telfa pad, then the whole thing secured by wrapping stretchy Coban material up under my chin, encircling my head so that I look like the ghost of Jacob Marley in ‘A Christmas Carol.” The skin breakdown, radiation dermatitis, will continue for another several weeks.
During the last few weeks I have also been overcome with a profound weariness and fatigue, a condition vaguely related to accumulated radiation and the detritus of cellular breakdown. But I have in fact come out the other end of this. Unlike the peculiar elegance of leukemia which leaves only internal scars, this episode is visible in the long, sweeping scar on my face that, though fading, is hard and a bit jagged to touch. And I still carry the long red mid-abdominal scar from last summer’s brush with pancreatic cancer’s precursor surgery.
The blindness in my left eye, courtesy of my transplant procedure, has proved absolutely permanent. Multiple infections robbed me of my sense of smell. Radiation has disabled my sense of taste but hopefully that sense will return after a period. My appetite is poor but that okay right now. I needed to lose ten pounds or so. I will need to followup on my pancreas this August. Hopefully I am free of cancer, at least for now. So many medicines – chemo, biotherapy, multiple antibiotics, anti-rejection meds, steroids – used in some many combinations then overlaid with 30 radiation treatments seems to have done unpredictable damage to my DNA.
I hold no grudge. I am alive years, a decade even, longer than I ever hoped. But I am beginning to feel like a permanent tourist in the nether world of cancer. Where will it strike next? Cancer has become a familiar guest in my life. The critical thing to remember, to cherish, is that that life does go on. And so I look forward to each new day.
Yesterday I had my 15th radiation treatment. I am halfway through, definitely the easier half. I confess I am writing this under duress. I have just spent the last hour typing out a clear, seamless narrative of my recent experience – checked and edited. I went to add a photo. For some reason lately my blogging platform has been rejecting photos as being too large. I tried to fix it, gave up, then hit my “Back” button. MY ENTIRE NEW POST HAD DISAPPEARED.
So here I go again. Sometimes the post is better the second time around. Always it is more tedious! So 15 down, 15 to go. Monday through Friday, radiation treatments have become my daily routine, my new normal. The treatments themselves have become rather boring and decidedly undramatic. Shouldn’t complain though. Drama and cancer treatment is seldom a good thing. It all started a few weeks ago, my second trip to the radiation department, this time for my simulation. You say “sim” if you want to be cool. Radiation departments are frequently housed in the basements of treatment centers. The walls are lined with lead, the machinery is massive. It’s heavy down there.
I am led back to the sim room. This is where the simulation CT scanner lives. I lie on the hard table. The technicians bring over a large rectangular sheet of a treated cloth mesh that has just been prepared by heating to soften the fabric. The whole thing is brought over my head and shoulders, then slowly brought down. Technicians on either side push the warm fabric around the contours of my face. It is snapped into place on the table itself. This will become my mask, fashioned specifically to my head and shoulders. It will ensure that my anatomy will be held in the same precise position and for each and every of the thirty treatments I am scheduled for.
A series of CT images are taken. All of these are then examined in the planning room by a team consisting of my radiation oncologist, a physicist, and a dosimitrist (who calculates the dose, both the total dose and the 30 fractionated doses). Radiation medicine is serious business. The radiation beam has a specific target. The official name for that target is my tumor bed, so-called since my actual tumor was removed some weeks ago my my surgeon.
My radiations beams are targeted but not quite so precise as say Cruise missiles are supposed to be. There is always “collateral damage.” This is due to the nature of radiation being delivered as a beam that is continuous. On it way to my tumor bed in the area that used to contain my parotid gland, it first encounters several layers of skin and muscle. It arrives at its target with optimal strength but then continues on, passing through structures in my throat and then out thru the other side of my face. In my case five separate beams have been planned, each from a different angle, of a different intensity, and of a different duration. If all goes as planned the maximum total dose will be delivered to the tumor bed, the area that might contain microscopic cancer cells that escaped the surgeon’s knife.
What does this collateral damage mean for me, the patient? In my case it means a bad case of sunburn and an increasingly sore throat. The first few weeks my face was increasingly red. Now it is shifting towards more purplish tones. Crusted areas have started to develop, especially around my suture lines. Desquamation is the medical term. Each morning I wake up to new blood stains on my pillowcase. The skin on the right side of my face is tight and a little swollen, making my face a but asymmetrical. The whole area is tender with occasional pangs in my ear and along suture lines. So far the sore throat has not interfered with eating but my voice fails me at times, dropping into a coarse, raspy whisper. My mouth is constantly dry despite an array of products from my dentist. Fatigue is becoming an issue. On Sunday and Tuesday I needed to take two naps each day, and that after nine or ten hours of sleep. Spring around our house with all our gardens is not a good time to be dealing with treatment-related fatigue.
My appointment each day is at 2:40. I drive downtown, valet park, take the elevator down to the basement, check in, get a cup of cold water, then head back to a waiting area. In two to ten minutes (this seems to correlate somewhat to how interesting is the magazine I am reading) a technician carrying my mask comes to fetch me. We go back to one of the two linear accelerator rooms. A plate to receive my mask is attached to the head of the table. The table is covered with a thin white sheet. I lay down as technicians place a foam support under my knees, then fasten me down to the table with eight plastic clips. SNAP, SNAP, SNAP… Now I am literally pinned to the table. I can blink but barely move my mouth to talk. The technicians retreat to a room next door, closing behind them a seven by seven foot, 5 inch thick lead and steel door. Remember those beams pass right through me and continue to bounce around the room.
It is right about now that my nose or ear or some other part of my face begins to itch, an itch I cannot scratch. I know that the staff and see and hear me. Music is playing. The first week I kept my eyes open and watched as the great machine rotated around my head, whirring, clicking and buzzing, and flashing red and green laser lights. Lately I just close my eyes and let my mind wander off somewhere else, not from anxiety but rather from boredom. SNAP, SNAP, SNAP… It’s all over in about five minutes.
On Wednesdays I see a resident and then my doctor. I am weighed, vitals signs are taken, and an assessment of the side effects is made. This is the time to ask questions. Last week I asked how the radiation might affect the vision in my right eye. I completely lost vision in my left eye years ago after a shingles infection. We look over my treatment plan in color-coded CT sections of my head. Maybe a 10% chance of cataract development in my good eye. In a day or two the dietician will ambush me and chide me for a half pound weight loss.
And so it goes. Not bad so far for cancer treatment. Folks with head and neck cancers who also need concurrent chemotherapy have a much harder time. So far just a bad sunburn and a slightly misshapen ear. Hopefully my throat will not get so bad that I need a feeding tube placed in my abdomen. Fighting the good fight. This is what we do as cancer survivors. I don’t mind the term cancer survivor because it is not so much about who I am as about where I have been.
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There are always two ways of looking at things. Sure I have a new cancer, my third actually, and given my medical history and the state of my immune system, perhaps not the last. After all there was a time when I did not think I would live much beyond a year. That was twelve years and four months ago. Much has happened in those intervening years, most of it good. My sons have grown into adulthood. I have four beautiful granddaughters. I have returned to cancer nursing. I started this blog. I have had the opportunity to give back, to make a difference.
And then there are these pesky problems – having my spleen and part of my pancreas removed last summer in order to avoid the transformation of precancerous nodules into malignant tumors, and now having had another temporarily disfiguring surgery to remove a dangerous high-grade parotid tumor. But it had all been good news. Both surgeries were successful – no post-op complications, clean margins. And now I am about to embark on a new chapter, going thru radiation therapy. Surgery, radiation, chemotherapy, biotherapy, stem cell transplant – I will have experienced all the common treatment modalities for cancer.This experience can inform my writing and how I relate to the larger world of cancer survivors.
The good news continued last week. First on Monday we met with my surgeon. He reported that there were clean margins. That means he thinks that “he got it all.” He also excised 32 lymph nodes and there was no sign of cancer involvement in any of them. He did recommend that I go through radiation therapy as an adjuvant treatment. Even though there was no evidence of disease spread, microscopic disease may still be present. High-grade suggests a highly active tumor with a propensity to spread rapidly if it gets a foothold. He says that some of his patients elect not to go through radiation for various reasons. We tell him that we have decided to do the treatment and have an appointment with a radiation doctor the next morning. On the way home Tish makes several phone calls to various family to share the news.
On Tuesday morning we meet at the Cancer Pavilion at the IU Health Cancer Center. Radiation centers are frequently located underground or in the basement of a building. Machinery can be enormously heavy and the walls must be shielded with lead, I had previously sought out recommendations for doctors from my colleagues at work. As a patient I was able to use the valet parking service, a small treat. We took the elevator to the basement. Registration was simple, quick and painless. A male nurse took us back. It turns out that we went to college with Tish and I, although he graduated between us. As he took my vitals he shared that he was a tongue cancer survivor of fourteen years.
The next person we met was a young female resident, a doctor who has chosen radiation oncology as their specialty and is doing training under an established physician, in this case, Mark Langer. We spend some time reviewing my, at this point, rather complicated medical history. We were impressed that both physicians asked us about our own understanding of both my disease and its treatment. Too often discussions with doctors can be one-sided – the doctor asking very specific questions and the patient providing, sometimes hopefully, short, to-the-point answers.
Not surprisingly they both recommended radiation treatment, six weeks, Monday through Friday. One of my bone marrow doctors pointed out once that if you go seeking advice from a guy with a hammer, his recommendation will include using that hammer. Their main reason was the high-grade nature of my particular disease. The type of cancer I have is called mucoepidermoid carcinoma. Most times these are low-grade and behave more like a benign tumor. Mine behave like a squamous cell tumor.
I am given a folder of educational material as well as an internet source of teaching material. I give them high marks for this as patient and family cancer education is the focus of the special project that I have been working on the past year. The good news continued when he said that he did not recommend having a G-tube placed for feeding. Since there was no lymph node involvement, the radiation field will be fairly small and isolated near the corner of my jaw where the parotid gland recently resided.
So that pretty much brings us up to date. I have found a way to keep my mind off the cloud but that is material for another post. I am writing this the day before my first treatment appointment. This is called planning and simulation. And I will write about that in due course. Until then,
Take care, Dennis
I just reread my previous post. Boy, did I leave it on a somber, teasing note. I suppose we would call this post-op day # 8. I am in the waiting and recovery mode. The surgeon minimized the discomfort that I might feel – “maybe just a stiff neck” he said. The pain hasn’t been that great, just nagging and persistent. I rate it at a 4-5 on a 10-point scale. Today is the first time I did not have have to take a pain pill when I got up. Using I have been taking one pail pill3 to 5 times a day. The pain seems to wander as the blood inside settles in various areas due to gravity. Wherever it has settled, it feels tight and hard. Much of my face still feels numb to the touch. No feeling at all on the outside, definite pain lurking beneath. It is my ear that gives the oddest of sensations or rather oddest lack of sensations. It is so oddly shaped, especially now since it is swollen.
I generally sleep on my side, my right side. So sleep, at least comfortable sleep has been difficult. For the first few days I daren’t lay on my favored side – too painful. I tried sleeping on my back, a technique that seems to work better in hospital than at home. I have trouble hearing on the right, due to the swelling. So sleeping on my left side tends to drown out sound – generally a good thing, except when Tish is trying to talk to me.
I sometime feel a little uncomfortable when I am out, with small children running away, screaming in horror and that sort of thing. Actually it is not that specifically noticable until I point it out. The area is gradually changing color, progressing to a darker and darker shade of red. There is an oblong streak of red, creeping down my sternum as if wanting to meet up with my vertical abdominal scar left over from pancreatic surgery last fall.
I have been taking naps in the afternoon. Lately I have been working in the yard a little, pruning rose bushes. This is steady, low impact, low energy work. Except for the bend.ing over, my body might not notice it all.
I found out my surgeon only gave me a release from work for two weeks. I also found out that FMLA denied my request because, due to my six weeks off in the fall for surgery, I have not worked 1250 hours in the past twelve months. All that means if that IU Health is not obligated to hold my position while I am off work. My position was in a state of flux anyway. We moved out clinic from the hospital to the cancer center. More isolated there I can not work later in the evening. Coming in much earlier it difficult because my mother lives with us and needs pretty much constant watching over. But I am not worrying about my job now. I am past retirement age. And this may be one of those points in your life at which you need to redefine yourself.
Next week should be interesting. Monday is my 2 week surgical follow-up. My surgeon is out on spring with his family. So we are meeting with a partner. Maybe he will be more talkative. After all, I do have CANCER and we haven’t talked much about that. Monday we hope to give a name to a specific diagnosis. What type of several possible cancers is this? How aggressive is my type? What will the treatment recommendations be? We know that most tumors such as mine require follow-up radiation. In some cases chemotherapy is also suggested.
It is hard to do much in the way of homework with the pathology results. But I have identified a radiation oncologist with more experience that most in head and neck cancers. So I have an appointment with him on Tuesday after own Monday meeting. We did this mostly out of impatience with waiting 2 weeks for the surgeon’s recommendation. Probably more important is the need to regain a sense of control over life and disease, to try to take back my rightful place in the driver’s seat of my life now under assault.
Two experts in the field have given me the same advice. Advice that I asked for but did not welcome as it brought with it a sense of gloom and general seriousness. The advice is to consider proactively having a G-tube or gastrointestinal tube, surgically placed in my abdomen. This is not a big surgery as those things go. But it is another thing done to me, another procedure. It is a medical appliance, a tan rubber tube with a stopper on the end, connecting my outside with my inside. It can be used to get part or all of my nourishment.
Even the the radiation will be very specifically focused, it will affect other cells in my mouth and throat. People getting radiation there experience throat and mouth pain, making it difficult, sometimes impossible to eat. And during this time of physical and emotional distress, sufficient calories are needed for healing. I could take a chance and wager that I will be able to successfully maintain adequate nutrition and hydration. But if I lost that wager it might mean interrupting the daily radiation therapy in order to recover for a week or so. And then might end up having to have a G-tube placed when my health, stamina, and immune system are at a low point anyway.
I may be putting the cart before the horse here. But I would rather mull over it a week before the actual discussion than be surprised during the consultation. All of this reminds me how much I prefer doing to waiting. So many things are on hold – my job, my grant, the rest of my life! What and how long with that be? Time again for redefinition, for discovering agency.