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)
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.
“Frankenstein” that is the first word to come to the mind of Sophia. I was sitting in the family room with a cloth over my head when the two girls came in to see Papa. day #1 post-op. Since the tumor was only the size of a marble, they were not prepared sweeping length of my suture line. It starts near the top front of my right ear. It then makes a small detour around my earlobe before emerging again from the back of my ear descending in a large gentle arc toward the bottom on my neck, stopping just shy of the notch in my throat.
Even though I was in hospital 24 hours, it was termed an “outpatient surgery.” I elected to be discharged on Tuesday after the Monday surgery. I had the option of staying an additional day. But I was able to swallow, I could eat, and my pain seemed well managed on just two pills every four hours. Before I left the nurse cleaned dried blood from my sutures, adjacent skin, and hair. This was after she pulled my J-P drain. This stands for Jackson-Pratt. At the very bottom of the incision before he closed up the surgeon placed a 8″ tube, the first 4 inches of it round, clear plastic. The end of it was flat, white, and studded with perforations – kind of like the old fashioned flat hoses we used to gently water flowers in gardens. The purpose of this one though is to drain, blood that is. It is connected first to a collapsible clear plastic bulb as in a turkey baster, then on through more tubing to a suction head in the wall.
Over the past twenty hours it had collected 3-4 ounces of my blood. In my own job at the bone marrow transplant center, I have occasion to “pull” central venous catheters. Same principle – just clip a suture or two tying the tubing to the skin, then a brisk steady pull. But when the flat part of the device was pulled through the round hole, I really felt it.
The surgery was remarkable really, both in its daring breadth but also in its seeming predictable every-dayness. I had spent most of Saturday working in the cellulose-filled attic over the garage, pulling white and yellow electric cable to bring more power, light, and outlets to my workshop. The work is messy, confined and tedious. You have to work a mask due to the dust and fiber. I wear a flashlight on a headband in order to see. This was a job I wanted to finish before my face was to be cut up.
Sunday was better, lazy like more Sundays should be. Read the paper, wrote a new post for this blog, went to a movie with Tish, then out to dinner for a steak and shrimp. Who knows when I will be able to chew so easily again. The week before had seemed long, foreboding and grey – emotionally cloudy. The weekend was like a calm before a quiet storm.
NPO – nil per os – nothing by mouth after midnight Sunday. Slept in, took a shower, dressed and grabbed by identification before leaving. One wonders though why a person might want to misrepresent their identify in order to have this done to them. I drive, Tish is too nervous. That may not be true though. Maybe she just wears her anxiety on the outside while I keep it subdued within.
We have a community nursing discussion page on the network intranet. I post short essays periodically, especially when I think my employer might benefit my rather critical feedback. I wrote last week about my impending surgery and medical leave. One nurse wrote back that she rarely reads the forum but just happened to that day. She works in pre-op at IU North hospital and would try to take care of me. So there I was, laying in a gown in a business-like setting, a business inherently scary, and I have an instant friend and angel to care for me!
I do have an advantage here. Knowledge is power and I do have knowledge of what is about to happen. I can substitute anxiety with curiosity. I can act pointed technical questions. I can play an alternate role – not the helpless patient on a gurney, but rather a nurse on a tour of the OR. The anesthesiologist has excellent bedside manner and a give him my complete confidence. I have come to relish that quick, quiet moment of anesthesia. That moment that creeps up so quickly and so quietly that it is impossible, almost by definition, to note the precise moment of its arrival. If it is here, then you’re already gone. The scrub nurse asked me if I had brought a good dream. But this is the place beyond dreams. It strikes me in that last milisecond that this place is more like … well … death …
When I last sat down to post, I was preparing for a biopsy of my parotid gland. Is it benign or malignant? Well, tomorrow is my surgery but that’s not much of a hint. They were going to take it out, excise it regardless. We drove downtown that morning to the IU Health Medical Center, the place where I work. Earlier in the week I had sped up the whole process by going down to the basement area and tracking down one of the techs. Yes, she said, a radiologist had looked at my CT scan and approved a ultrasound-guided fine needle asperate of the mass on my main salivary gland. The tech went ahead and made an appointment for me, bypassing my surgeon’s office and the central scheduling department. The perks of membership (in the healthcare culture)!
She said I would need conscious sedation, a little cocktail of fentanyl and versed, as that area of my face was criss-crossed with nerves and they didn’t want me moving. So here we are, back in the basement, Tish and I because I wouldn’t be allowed to drive home. The pace was efficient, a few minutes in Registration, then down to the radiology waiting area. Whoops, you’re getting sedation. You go to a special area. Good luck from Tish. I am led to a small dark room by a tech I met last week. I slip into a gown. There is a cool blue glow from the lighting. As he was starting my IV site, the room started to fill with strangers milling in the shadows – a perky young resident radiologist describing in detail the imminent procedure, two medical students, a pathology tech, and briefly, a pathologist.
I was surprised they only use a 25 gauge needle. This is pretty tiny, much smaller than I you were getting a flu shot. I use these when giving sub-q (just under the skin) injections to my clinic patients. They will take a few samples, send them out of the room to be viewed, determining if these are good enough for analysis or not. The back to take a few more. Of course in a few seconds I will be unaware of this. It will all be like a hazy dream state. Actually unaware is not accurate. I will be aware in the moment. I will feel any pain or uncomfortable sensations. I will respond when they ask to me turn my head. I may even respond to questions though I will appear a little drugged. But the first real awareness, the first real memory that will not instantly float away, will come an hour later in the recovery room. A nurse tells me the procedure is complete. If I want to, I can sleep for another hour before I can be discharged. Continue reading
Benign or malignant? that is the question. Another chapter in “Here we go again!” The legacy of one cancer leading into another. I am just a little anxious. The odds are in my favor. I noticed it last spring – a small, pea-sized, pea-shaped structure in the corner of my jaw. It rolled around in my fingers … which is a good sign. The medical word for that is encapsulated. This suggests that it is not attached to anything, that it behaves more like a cyst.
I casually showed it to various physicians. The common opinion – “I don’t know what it is. You probably better have it looked at / scanned / investigated.” But it does seem encapsulated which is good. I am a world class procrastinator. I showed it to a variety of physicians – primary care, dermatology, dentist, hematologist. Just never the right one. I knew I really needed to show it to a head and neck guy, an ENT, an otolaryngologist.
So this winter, when I noticed that it had increased to the size of a marble and that I seemed to be salivating, drooling on the same side as the marble, I asked for recommendations from my nursing colleagues. One Dr. Goldenberg. He took my history, examined the lump, then told me his thoughts. If it’s inside my parotid gland there is only a 20% chance of malignancy. If it is outside the gland, those chances increase to 50%. Benign or malignant, the mass will need to be taken out, excised is the big word for that. But first let’s see what we’re dealing with. Let’s get a CT scan to better visualize and locate it in relation to other structures. Then we’ll do an ultrasound-guided biopsy, send the tissue samples to the pathologist, and get a definitive idea of just what in the heck is growing there.
In the meantime I have my yearly appointment with my transplant doctor who doesn’t like the lump at all. His motto: “any mass is malignant until proven otherwise.” He reminds me that stem cell transplant survivors are “at risk” for head and neck cancers.
Step one, the CT scan, is done. Been there, done that. Most of you have also. The warm feeling that washes over your body when they push the intravenous dye made me feel almost nostalgic. The results show that it is inside the parotid sort of, but not entirely. 1.3cm x 1.6cm x 1.8cm. The differential diagnosis – the list of possibilities – is always scary to read. The pathologist attempts to cover all his bases, legal and medical.
Mine reads: “Warthin’s tumor with concern for malignant transformation; consider oncocytoma versus primary intraparotid or metastatic lymph node.”
I have written about patient’s various dilemmas related to waiting. And I have observed before, waiting for a path result is among the hardest. So it could be a long weekend. Once my otolaryngologist gets the results, we’ll set up a time to talk. We’ll make our plans. Then I’ll got in hospital to get a slim new scar, this one will curve gently around my jaw. If it is benign, that will like be the end of that chapter in my medical life. If it is malignant… well, we’ll just deal with that as it comes. When we become patients, whether newbys or veterans, dealing with it is what we do.
Take care, Dennis
Comment privileges continue to be closed due to a flood of bogus members. You may comment off-line at email@example.com