I learned something about fear today. Something that I would like to share:
In a previous posting, I talked about how distressing it was initially to get the cancer diagnosis, but that -- with time and understanding of my condition in its larger sense -- I had come to the conclusion that "nothing could go wrong." And I still feel that way.
But this morning, I had this "dark cloud looming on the horizon" feeling that I could not identify. Why did I feel so apprehensive after settling into such positive confidence over the last week or so? This afternoon, working with Allison, my healer, (whom many of you know...) I believe we have uncovered an important truth about fear.
But let's back up a bit first:
Early in this process, Deb and I knew very little about what was really going on with me. Did I have a single tumor somewhere inside or was my body riddled from head to foot with cancer? Was the treatment going to be a short, simple process or months of painful procedures? Was the cancer and its treatment going to rob me of my vitality? Cripple me? Was I going to die? Fear was a perfectly reasonable feeling, and Deb and I shared it frequently.
During this time, Deb and I often just held each other, remembering the wonderful life that we've built together -- a shared life that might be coming to an end sometime soon... Although we were both afraid from time to time, it must be said that in this period of not-knowing we found a reawakening of our love, our passion for each other. Even in the darkest moments, there can be joy. And the fear subsided and then evaporated.
Well, that time is past -- and it feels like it is long past, even if it is really only a few weeks. We now know that I have only a single, small, fairly new tumor located somewhere in my head/neck region. It needs to be found and dealt with, but my medical team is confident they can get that job done. For them, this is fairly routine stuff. We now know that most people with this condition recover their fully active lifestyle. We now know that this cancer won't kill me.
Having made the decision yesterday to continue the plan to have the upcoming surgery done at Chester County Hospital rather than Johns Hopkins (more on this will be posted elsewhere); and that the surgery will be performed by Dr. Chuma, whom I trust; all the pieces seem to be in place.
So why did the fear come back? And why did it feel so different?
Having done my research, asked every question I could think of, secured a second opinion from a prestigious instution, talked my decisions over with dear friends who happened to be superb medical folks themselves, the road ahead seemed clear.
And I felt that if I truly had confidence in my decisions, my medical team, my chosen hospital, my ability to bounce back from surgery and radiology, then there was no reason for fear. In fact, any hint of fear would be an indication that I did not have full confidence in what I was doing -- and what everyone else was doing on my behalf.
So fear equated with not feeling prepared. Not having full confidence in the plan. So I made no room for such feeling. Everything felt tight and under control, and I pushed any feelings of fear away.
Allison reminded me that there were still many unknowns in my immediate future: what Dr. Chuma would find during the surgery. What the biopsy would show. How uncomfortable my recovery would be -- and how long it would take. How soon I could start driving again. Performing again. Dinosaur hunting again. And so there were, in fact, lots of perfectly sensible reasons left for fear: a stack of serious unknowns.
Allison also helped me see that pushing away the fear only empowered it. It did, in truth, loom darkly on the horizon, where I couldn't meet it and work through it. If I allowed myself to feel the fear, see that it was perfectly reasonable to feel afraid of what the future might hold, then I could move through the fear and come out on the other side. I could recognize the feeling of fear as being just a feeling and get back to enjoying every moment of living and relishing the manifold gifts that the Universe has provided for me.
So I stand by my previous statement that nothing can go wrong with this process. Painful things might happen. Unexpected things -- both good and bad -- will undoubtedly happen. Fear will undoubtedly show up again -- likely at unexpected and perhaps unfortunate times. And I hope simply to recognize the fear, own up to it, allow it to wash through me, and leave me nestled in the arms of love.
Wednesday, April 29, 2009
Tuesday, April 28, 2009
The Upcoming Surgery: A Reaction
When Dr. Chuma told me about the biopsy results, I was stunned and disbelieving:
- He must have the results of somebody else's test and called me by mistake.
- Dammit, it was just a little bump on the neck. It couldn't be anything serious, much less cancer.
- I've been ridiculously healthy all my life. Why would that change?
- I've done nothing wrong. I don't deserve this!!
When he later told me what a "Modified Radical Neck Dissection" involved, I was repulsed and terrified. It sounded so barbaric -- such a huge and devastating response to the discovery of such a small lump. A lump I might not have even noticed for weeks or months if my GP doctor hadn't brought it to my attention.
Hadn't I already been through one surgery to remove the lump? Wasn't that the most serious operation I'd ever had? Hadn't I paid enough dues for having a little lump on my throat? This just wasn't fair!!
What I came to see is that I had focused on the lump. The cancer. The very idea of cancer affecting me. The operation. What might go wrong -- in or after the operation. That I would be a cancer patient forever. That I didn't know what condition I would be in when all the dust had settled. What I might lose during the operation and recovery period. How I might have to bear these losses for the rest of my life...
Sandra Barnard (whom some of you know) has occasionally said "You need to be very careful what you focus on in your life. Because with that focus, you give that person or that thing an energy -- a presence -- that it wouldn't otherwise have. And you may find yourself building the rest of your life around that object or person. So choose wisely." Or words to that effect.
And what I came to see was that, in truth, I am a very healthy person who happens to have a touch of cancer. That I am incredibly fortunate that my GP doc found this lump so early. Fortunate because now it can be dealt with in the most efficacious manner by excellent medical personnel specifically trained to help and support me. That my years of keeping myself reasonably fit and trim were about to pay off big time.
That I am married to a wonderful woman who supports me -- and wants to support me -- when I simply can't do it alone. A loving companion that I have taken for granted far too often.
That I am surrounded by friends and family who love me. That I haven't really understood how much love there is directed my way from so many different sources. Didn't understand this until after the diagnosis came in.
That my e-mail directory is much bigger than I thought it was -- and it's filled with the names of people who mean so much to me. Funny people. Inspiring people. Talented people. Warm and loving people.
That I live at a time and in a place where this cancer is totally curable.
That in a very real sense, nothing can go wrong because of this illness. It may be short or long in duration. It may be painless -- or otherwise. I may wind up with my all-but-perfect health intact -- or not. But nothing can go wrong.
The Upcoming Surgery: a Description
(Dr. Chuma gave me a brief overview of this a couple of weeks ago and I've been filling in the "why's" and "how's" -- from him and other sources -- ever since. Here's what I know now.)
The operation, which is known as a "Modified Radical Neck Dissection," has three primary goals:
The operation, which is known as a "Modified Radical Neck Dissection," has three primary goals:
- remove tissue that may contain cancerous squamous cells like those found in the original lymph node surgery. Then do a biopsy on this tissue to determine whether or not cancerous cells are present. In other words, how far has the cancer spread?
- remove two small hard, swollen and highly suspect lymph nodes located just under and behind my chin that we've found since the first surgery. (Were they there at the time of the first surgery? Don't know. They are tucked up very close to the chin bone itself and easily could have been missed. I believe they've gotten bigger since they were first noticed...)
- take samples of tissue from places where this type of tumor typically starts, including the base of the tongue, tonsil remnants, sinuses, larynx, and a few others. Then do a biopsy on these samples to try and locate the tumor itself. With luck, biopsy on one and only one of these samples will come back positive.
Most likely tissue for cancerous squamous cells would be, of course, the remaining lymph nodes on the left side of my neck. So a bunch of them will be removed for biopsy. In order to do this, the sternocleidomastoid (or "SCM") muscle on the left side of my neck will also be removed, since the muscle and its surrounding fascia contain lymph nodes that are often invaded by cancerous cells. This is a fairly large muscle, but I've been told by several people who ought to know that you can get away without it with no loss of mobility or strength. Yay!!
The jugular vein on the left side will also be removed. But this also seems to be okay, since you don't have just two jugular veins, but you actually have four: two superficial ones and two which are deeper in the neck. One of each on each side of your neck. (Did you know that?) So it's the shallow one on the left side that needs to go. Double yay!!
I've become far more comfortable with this than I ever thought possible. As I'll explain in the next posting.
Monday, April 27, 2009
Conquering the Mountain
Okay, here's something I don't get:
Someone is the first person to climb a mountain -- or climb it in a particular fashion (e.g., no rope, no bottled oxygen, new route to the top, etc.). And the news reports that "So-and-so has conquered Mount Whatever." Can that be true?
Does the climber now have actual control over the mountain? Is the mountain now less high? More beautiful? Less dangerous? Or is the mountain essentially the same as it was before the ascent? Did anyone inform the mountain that it had been "conquered"?
The word "conquering" in this sense can also show up in articles about surfing the winter storm swells in Hawaii, running across America barefoot or rowing a small boat across the Atlantic. You've seen or read these stories, yes?
So that's what I don't get. This idea of "conquering."
It's likely that the reporter for the newspaper, TV show or magazine simply picked up this time-worn cliche of "conquering" and pasted into the report. It feels like hollow 19th-century bravado: "conquering" the desert, "conquering" the jungle...
Now, I do get that the person who's done the climbing, running, rowing or whatever has faced serious danger and extended himself or herself to the utmost to achieve the goal. But while this person may feel she or he has accomplished something laudable, my hunch is they don't feel they've "conquered" anything. They understand that the mountain remains as it was, that the surf continues to pound the shore in Hawaii, that the Atlantic was totally unfazed by the rowboat. I believe it's the reporting, not the doing.
This may sound like quibbling over words, but it's important to me now. Because to me, the word "conquering" speaks of arrogance. Smugness. Pride.
And I don't plan on "conquering" my cancer this way. I will work assiduously with my doctors to find and remove the tumor. I will particpate in any and all follow-up work that is assigned to me. I will rest in the love, compassion and caring of my friends and family.
Someone is the first person to climb a mountain -- or climb it in a particular fashion (e.g., no rope, no bottled oxygen, new route to the top, etc.). And the news reports that "So-and-so has conquered Mount Whatever." Can that be true?
Does the climber now have actual control over the mountain? Is the mountain now less high? More beautiful? Less dangerous? Or is the mountain essentially the same as it was before the ascent? Did anyone inform the mountain that it had been "conquered"?
The word "conquering" in this sense can also show up in articles about surfing the winter storm swells in Hawaii, running across America barefoot or rowing a small boat across the Atlantic. You've seen or read these stories, yes?
So that's what I don't get. This idea of "conquering."
It's likely that the reporter for the newspaper, TV show or magazine simply picked up this time-worn cliche of "conquering" and pasted into the report. It feels like hollow 19th-century bravado: "conquering" the desert, "conquering" the jungle...
Now, I do get that the person who's done the climbing, running, rowing or whatever has faced serious danger and extended himself or herself to the utmost to achieve the goal. But while this person may feel she or he has accomplished something laudable, my hunch is they don't feel they've "conquered" anything. They understand that the mountain remains as it was, that the surf continues to pound the shore in Hawaii, that the Atlantic was totally unfazed by the rowboat. I believe it's the reporting, not the doing.
This may sound like quibbling over words, but it's important to me now. Because to me, the word "conquering" speaks of arrogance. Smugness. Pride.
And I don't plan on "conquering" my cancer this way. I will work assiduously with my doctors to find and remove the tumor. I will particpate in any and all follow-up work that is assigned to me. I will rest in the love, compassion and caring of my friends and family.
And when I am declared to be cancer-free, I plan to greet the news with joy and celebration. And humility and gratitude. And the knowledge that the cancer can reappear at any time.
When the first lymph node was removed from my neck, I felt certain that it was only a sebaceous cyst or other harmless bump. My certainty was so strong that the shock of hearing that the bump contained cancerous cells was all the more bewildering and frightening. I'm sure of this. (In fact, I was busy composing an e-mail telling everyone that the biopsy came back as a benign growth when the doctor called and told me differently.)
There's work to be done, and done with reverence and confidence. But without bravado and false pride.
Commenting on the blog
(The several steps in this process are necessary to keep automated spam software from clogging up blogs and websites. Apologies, but that's e-life in the 21st century.)
At the bottom of each posting, there is a line labeled "Comments." Clicking on this opens several new items:
-- the "Comment" box is pretty self-evident. That's where you write whatever you feel like posting.
-- the "Comment As: Select Profile" box requires you to make a selection . Clicking on this reveals several choices, the best choice of which is probably the "Name/URL."
You can enter any name you want -- the software doesn't check on this. And the "URL" field only requires the form "something.com" No "@" signs, since the software is not looking for an e-mail address. The software doesn't check to see if the URL is a valid website address, so feel free to be creative!
-- after you've filled these out, a pop-up box appears with some wavy-looking letters that you will have to repeat in the field directly below it. This is a key part of protecting the blog from automated spamming. (The letters look like late 1960's lettering from the hippie/Haight-Ashbury movement, so I find it way cool to see...)
And that should do it. Please send me an e-mail at GotaJugl@msn.com if you have difficulties with this.
And thanks so much for posting a comment!! This is a way we can stay in touch with each other.
At the bottom of each posting, there is a line labeled "Comments." Clicking on this opens several new items:
-- the "Comment" box is pretty self-evident. That's where you write whatever you feel like posting.
-- the "Comment As: Select Profile" box requires you to make a selection . Clicking on this reveals several choices, the best choice of which is probably the "Name/URL."
You can enter any name you want -- the software doesn't check on this. And the "URL" field only requires the form "something.com" No "@" signs, since the software is not looking for an e-mail address. The software doesn't check to see if the URL is a valid website address, so feel free to be creative!
-- after you've filled these out, a pop-up box appears with some wavy-looking letters that you will have to repeat in the field directly below it. This is a key part of protecting the blog from automated spamming. (The letters look like late 1960's lettering from the hippie/Haight-Ashbury movement, so I find it way cool to see...)
And that should do it. Please send me an e-mail at GotaJugl@msn.com if you have difficulties with this.
And thanks so much for posting a comment!! This is a way we can stay in touch with each other.
Saturday, April 25, 2009
From the Chuang Tzu -- #1
(The Chuang Tzu is a 2300-year-old book of Taoist wisdom.)
"Whatever has an appearance or a semblance, whatever makes a sound or has a color -- they're all things. One thing can't be that much different from another. Which should take precedence? They're all just bright appearances.
"But what creates things is formless and stays at the still point of the changeless. Now, whoever gets hold of this and dwells in it alone may not be detained, may not be stopped by things. People like this can inhabit a place where there is no excess, can hide in a space that has no hint of a boundary, and can ramble free and easy from the endings to the beginnings of the ten thousand things. They will be at one with the heart they were born with, nourish their ch'i, harmonize the power of their virtue, and get through to that which creates things. What is heaven-born they sustain, complete, within them. What is of the spirit is never rejected. How could mere things confound them?"
"Whatever has an appearance or a semblance, whatever makes a sound or has a color -- they're all things. One thing can't be that much different from another. Which should take precedence? They're all just bright appearances.
"But what creates things is formless and stays at the still point of the changeless. Now, whoever gets hold of this and dwells in it alone may not be detained, may not be stopped by things. People like this can inhabit a place where there is no excess, can hide in a space that has no hint of a boundary, and can ramble free and easy from the endings to the beginnings of the ten thousand things. They will be at one with the heart they were born with, nourish their ch'i, harmonize the power of their virtue, and get through to that which creates things. What is heaven-born they sustain, complete, within them. What is of the spirit is never rejected. How could mere things confound them?"
A Gift from the River
My sister and I spent last Saturday afternoon kayaking on the water we used to sail, row, and paddle when we were quite young: Middle River, Dark Head Cove, and the water that joins them together and then flows off to the Chesapeake. Although we hadn't done this trip in many years, of all the things that connect Martha and me, this water remains one of our strongest bonds.
That morning, I had informed my Dad about my recent cancer diagnosis. I watched his eyes tear up and listened to his voice begin to quiver. (My Dad doesn't cry. I'm not sure he knows how.) I told him that the prognosis was excellent and that I had complete confidence in the medical persons and facilities that would take me through my treatment. He smiled at me and told me, "I'm still praying for you."
Martha and I took him to lunch, then drove him home and set out for the water.
As we paddled about, we would stop and reminisce about events that had happened to us at this location or that. Sailing in the summer, ice skating in the winter. Stories long forgotten of friends and family surfaced as the afternoon wore on.
We were amazed at the variety of birdlife which now inhabits these familiar waterways: several flocks of terns (which seem to be taking over for the once-ubiquitous herring gulls), a night heron resting high in a tree, a pair of nesting bald eagles. All this was new, unexpected, and most very welcome!
As we paddled, we picked up the trash that floated in the water -- a soda can here, an unidentifiable piece of plastic there -- and put them in the bottom of our boats. We do this with a strong sense of obligation: the water has done so much for us, this is the least we can do in return.
Our time on the water was drawing to a close and we started heading back to our launch site. Looking ahead, I saw some small, whitish thing bobbing in the water, and I got ready to haul it aboard to add to the trash pile I had collected. But it wasn't trash.
It was a votive candle. That looked like it had been lit exactly once. Hardly trash, the candle felt like a gift from the river. An assurance that, not only did I have many friends and family thinking good thoughts about me, praying for me, but now I had my boyhood river giving me a sign, a gift, that all would be well.
That morning, I had informed my Dad about my recent cancer diagnosis. I watched his eyes tear up and listened to his voice begin to quiver. (My Dad doesn't cry. I'm not sure he knows how.) I told him that the prognosis was excellent and that I had complete confidence in the medical persons and facilities that would take me through my treatment. He smiled at me and told me, "I'm still praying for you."
Martha and I took him to lunch, then drove him home and set out for the water.
As we paddled about, we would stop and reminisce about events that had happened to us at this location or that. Sailing in the summer, ice skating in the winter. Stories long forgotten of friends and family surfaced as the afternoon wore on.
We were amazed at the variety of birdlife which now inhabits these familiar waterways: several flocks of terns (which seem to be taking over for the once-ubiquitous herring gulls), a night heron resting high in a tree, a pair of nesting bald eagles. All this was new, unexpected, and most very welcome!
As we paddled, we picked up the trash that floated in the water -- a soda can here, an unidentifiable piece of plastic there -- and put them in the bottom of our boats. We do this with a strong sense of obligation: the water has done so much for us, this is the least we can do in return.
Our time on the water was drawing to a close and we started heading back to our launch site. Looking ahead, I saw some small, whitish thing bobbing in the water, and I got ready to haul it aboard to add to the trash pile I had collected. But it wasn't trash.
It was a votive candle. That looked like it had been lit exactly once. Hardly trash, the candle felt like a gift from the river. An assurance that, not only did I have many friends and family thinking good thoughts about me, praying for me, but now I had my boyhood river giving me a sign, a gift, that all would be well.
Wednesday, April 22, 2009
Contact Me
I've set up this blog so that anyone can post a comment to what they read here, but the procedures for doing so are understandably a bit tricky. They have to be to elude the computer-driven "spiders" that pollute blogs and interactive websites with spam postings: Viagra for sale, grow your own natural hair, waterproof your basement, Nigerian banker needs your help, etc., etc.
So let me know if you've tried to post a comment and been unsuccessful. (I will outline procedures on this blog in the next day or two.)
And in any case, please feel free to call me at 484.639.7510 or e-mail me at GotaJugl@msn.com
So let me know if you've tried to post a comment and been unsuccessful. (I will outline procedures on this blog in the next day or two.)
And in any case, please feel free to call me at 484.639.7510 or e-mail me at GotaJugl@msn.com
A Chronology
NOTE: I plan to update this entry as new events unfold.
Wednesday, January 28, 2009 I visit Dr. Johnson (my GP) for antibiotics for a lung infection that refuses to go away otherwise. She feels my neck for lymph nodes, and notices a bump halfway down my throat on the left side that doesn't fit with the standard lymph node swelling associated with throat/lung infection. She tells me to make a follow-up appointment for several weeks later to see if the bump remains.
Friday, February 20, 2009 Revisit Dr. Johnson. The bump is still there and is perhaps a bit larger than it was during the first visit. She suggests a CAT scan and a visit to an Ear/Nose/Throat (E/N/T) specialist, and recommends two names -- one of which is Dr. Chuma.
Tuesday, February 24, 2009 Have CAT scan done at Fern Hill facility of Chester County Hospital.
Wednesday, March 18, 2009 First visit with Dr. Chuma, who looks at CAT scan and doesn't see anything definitive. He takes a needle biopsy.
Thursday, April 2, 2009 Revisit Dr. Chuma. Biopsy result shows no malignancy and suggests Warthin's Tumor. Dr. Chuma doesn't agree with analysis, as Warthin's tumor grows much closer to the salivary glands -- up closer to the chin line. He suggests a surgical removal of the lump to confirm exactly what it is. Bump feels a little bigger.
Tuesday, April 7, 2009 Surgery to remove lump agt Chester County Hospital.
Friday, April 10, 2009 Good Friday. Dr. Chuma telephones to tell me the lump was a lymph node that contained squamous cells that were cancerous. He further explains that the cells could not have originated in the node (as squamous cells line the surface of mucus membranes, such as the back of the tongue, tonsils, some sinus areas, etc.), and therefore originated somewhere else in my head/neck area. The good news here is that the condition is not cancer of the lymph system. He tells me that a PET scan is the next logical step. (A PET scan will highlight any area of tissue that has a high metabolic rate, i.e., cancerous cells.)
Monday, April 13, 2009 -- AM Visit Dr.Chuma to have stitches removed. Dr. Chuma describes the "modified radical neck dissection" operation that seems to be in my immediate future. We set a date for the surgery of May 5. (He had selected an earlier date, but assured me that moving the date out a couple of weeks would have absolutely no effect on the end result. So we moved the date out to allow me to take partake in a series of important events prior to the surgery and recovery period.)
Monday, April 13, 2009 -- PM PET scan at Chester County Hospital.
Friday, April 17, 2009 Visit with Dr. Chang, Dr. Chuma's recommended radiologist. This is kind of a "get acquainted" meeting, allowing Deb and me to ask any questions we may have and understand what Dr. Chang's role will be in my healing. He explains that the cancerous cells found in the lymph node broke off of the tumor (wherever it is), and clogged the lymph node to keep it from draining normally. He says that chemotherapy might not be necessary, but that radiology is almost inevitable. For reasons yet to be determined, the "official" results of the PET scan are not available, but Dr. Chang examines the PET scan disk we brought with us and tells us there are no readily visible tumor locations showing in the scan. This is very good news, as I might have "lit up like a Christmas tree" under the scan, with multiple tumor locations throughout my body.
Tuesday, April 21, 2009 Dr. Chuma calls with "official" results of PET scan. The only two "hot spots" showing on the scan are my previous surgery site (which is normal for healing tissue) and another lymph node located close to the back left corner of my lower jaw. He says he will remove that lymph node as well during the upcoming surgery. He explains again that he will be doing a "blind biopsy," which means that he will remove small portions of tissue from locations that usually have this kind of tumor associated with them. He will also remove some or all of the tissue left over from my tonsillectomy (which took place probably 50 years ago or so...). He said he had examined this location previously and felt it was suspicious. He also explained once again that a PET scan will only light up tumors that are bigger than 1 centimeter -- roughly the width of a fingernail. So this means the tumor is small and therfore probably rather new. All of which is good news.
Wednesday, April 22, 2009 Phone call from Dr. Johnson (my GP) just to check in and see how I'm doing. Clearly, she has been in touch on several occasions with Dr. Chuma -- which makes me feel great. I run everything I know past her and ask her if there's anything I'm overlooking. She tells me that I seem to be hitting all the right notes. She says that the final decision on a surgeon is mine and mine alone, but that she has every confidence in Dr. Chuma.
Friday, April 24, 2009 Concerned about strained, mildly painful feeling in both sides of my neck, I call Dr. Chuma: this might just be emotional stress, but I thought he should know. He invited me to stop into his office immediately. (Yay!!) He probes both sides of my neck, tells me he can't feel anything unusual, but that psychosomatic stress symptoms are not unusual at this part of the process. I take the opportunity to go over some parts of the procedure that I find worrying, and he elaborates. I ask him if the surgery will affect my golf swing. He thinks about it for a moment, then asks me, "You're right-handed, aren't you?" I say yes. He thinks about it a bit, then says, "Nah, you'll be fine."
COMING UP:
Wednesday, January 28, 2009 I visit Dr. Johnson (my GP) for antibiotics for a lung infection that refuses to go away otherwise. She feels my neck for lymph nodes, and notices a bump halfway down my throat on the left side that doesn't fit with the standard lymph node swelling associated with throat/lung infection. She tells me to make a follow-up appointment for several weeks later to see if the bump remains.
Friday, February 20, 2009 Revisit Dr. Johnson. The bump is still there and is perhaps a bit larger than it was during the first visit. She suggests a CAT scan and a visit to an Ear/Nose/Throat (E/N/T) specialist, and recommends two names -- one of which is Dr. Chuma.
Tuesday, February 24, 2009 Have CAT scan done at Fern Hill facility of Chester County Hospital.
Wednesday, March 18, 2009 First visit with Dr. Chuma, who looks at CAT scan and doesn't see anything definitive. He takes a needle biopsy.
Thursday, April 2, 2009 Revisit Dr. Chuma. Biopsy result shows no malignancy and suggests Warthin's Tumor. Dr. Chuma doesn't agree with analysis, as Warthin's tumor grows much closer to the salivary glands -- up closer to the chin line. He suggests a surgical removal of the lump to confirm exactly what it is. Bump feels a little bigger.
Tuesday, April 7, 2009 Surgery to remove lump agt Chester County Hospital.
Friday, April 10, 2009 Good Friday. Dr. Chuma telephones to tell me the lump was a lymph node that contained squamous cells that were cancerous. He further explains that the cells could not have originated in the node (as squamous cells line the surface of mucus membranes, such as the back of the tongue, tonsils, some sinus areas, etc.), and therefore originated somewhere else in my head/neck area. The good news here is that the condition is not cancer of the lymph system. He tells me that a PET scan is the next logical step. (A PET scan will highlight any area of tissue that has a high metabolic rate, i.e., cancerous cells.)
Monday, April 13, 2009 -- AM Visit Dr.Chuma to have stitches removed. Dr. Chuma describes the "modified radical neck dissection" operation that seems to be in my immediate future. We set a date for the surgery of May 5. (He had selected an earlier date, but assured me that moving the date out a couple of weeks would have absolutely no effect on the end result. So we moved the date out to allow me to take partake in a series of important events prior to the surgery and recovery period.)
Monday, April 13, 2009 -- PM PET scan at Chester County Hospital.
Friday, April 17, 2009 Visit with Dr. Chang, Dr. Chuma's recommended radiologist. This is kind of a "get acquainted" meeting, allowing Deb and me to ask any questions we may have and understand what Dr. Chang's role will be in my healing. He explains that the cancerous cells found in the lymph node broke off of the tumor (wherever it is), and clogged the lymph node to keep it from draining normally. He says that chemotherapy might not be necessary, but that radiology is almost inevitable. For reasons yet to be determined, the "official" results of the PET scan are not available, but Dr. Chang examines the PET scan disk we brought with us and tells us there are no readily visible tumor locations showing in the scan. This is very good news, as I might have "lit up like a Christmas tree" under the scan, with multiple tumor locations throughout my body.
Tuesday, April 21, 2009 Dr. Chuma calls with "official" results of PET scan. The only two "hot spots" showing on the scan are my previous surgery site (which is normal for healing tissue) and another lymph node located close to the back left corner of my lower jaw. He says he will remove that lymph node as well during the upcoming surgery. He explains again that he will be doing a "blind biopsy," which means that he will remove small portions of tissue from locations that usually have this kind of tumor associated with them. He will also remove some or all of the tissue left over from my tonsillectomy (which took place probably 50 years ago or so...). He said he had examined this location previously and felt it was suspicious. He also explained once again that a PET scan will only light up tumors that are bigger than 1 centimeter -- roughly the width of a fingernail. So this means the tumor is small and therfore probably rather new. All of which is good news.
Wednesday, April 22, 2009 Phone call from Dr. Johnson (my GP) just to check in and see how I'm doing. Clearly, she has been in touch on several occasions with Dr. Chuma -- which makes me feel great. I run everything I know past her and ask her if there's anything I'm overlooking. She tells me that I seem to be hitting all the right notes. She says that the final decision on a surgeon is mine and mine alone, but that she has every confidence in Dr. Chuma.
Friday, April 24, 2009 Concerned about strained, mildly painful feeling in both sides of my neck, I call Dr. Chuma: this might just be emotional stress, but I thought he should know. He invited me to stop into his office immediately. (Yay!!) He probes both sides of my neck, tells me he can't feel anything unusual, but that psychosomatic stress symptoms are not unusual at this part of the process. I take the opportunity to go over some parts of the procedure that I find worrying, and he elaborates. I ask him if the surgery will affect my golf swing. He thinks about it for a moment, then asks me, "You're right-handed, aren't you?" I say yes. He thinks about it a bit, then says, "Nah, you'll be fine."
COMING UP:
- second opinion visit to Johns Hopkins Hospital on Tuesday, April 28.
- surgery on Tuesday, May 5
Tuesday, April 21, 2009
Health Update - 4/21/09
Dr. Chuma, my E/N/T guy (and surgeon) explained by telephone this afternoon the "official" results of my PET scan. He said that there were two "hot spots" (that is, locations of high metabolic activity) that showed up on the scan:
-- one of them was the location of the first lymph node. The one he removed surgically some time ago. He said this was perfectly normal for tissue that was still recovering from surgery.
-- the other was another lymph node located just under the back corner of my chin bone on the left side. (I had pointed this out to him the other week as being another location possibly similar to the one that had started this entire process. It was a little tricky to find, since it feels like it's resting against the inside corner of the bone. I had the advantage in finding it since I'm inside all this stuff...) Since we've already established that lymph nodes cannnot be the source of the cancer, it did not clarify things that much.
So the PET scan did identify another piece of surgery that must take place in a week or so, but didn't locate the tumor. As explained elsewhere, the "blind biopsy" is still our best hope for locating that.
Good news: Randy didn't "light up like a Christmas tree" under the PET scan.
Pretty good news: Both lymph nodes with cancerous squamous cells showed up on the same side of my neck. Life would have been considerably more complicated if the second had shown up on my right side!!
Not-so-good news: We're still hunting for the tumor.
-- one of them was the location of the first lymph node. The one he removed surgically some time ago. He said this was perfectly normal for tissue that was still recovering from surgery.
-- the other was another lymph node located just under the back corner of my chin bone on the left side. (I had pointed this out to him the other week as being another location possibly similar to the one that had started this entire process. It was a little tricky to find, since it feels like it's resting against the inside corner of the bone. I had the advantage in finding it since I'm inside all this stuff...) Since we've already established that lymph nodes cannnot be the source of the cancer, it did not clarify things that much.
So the PET scan did identify another piece of surgery that must take place in a week or so, but didn't locate the tumor. As explained elsewhere, the "blind biopsy" is still our best hope for locating that.
Good news: Randy didn't "light up like a Christmas tree" under the PET scan.
Pretty good news: Both lymph nodes with cancerous squamous cells showed up on the same side of my neck. Life would have been considerably more complicated if the second had shown up on my right side!!
Not-so-good news: We're still hunting for the tumor.
Monday, April 20, 2009
Start here: Why a "health blog"?
On Friday, April 10, 2009 (a little over a week ago as I write this...) my E/N/T (that's ear/nose/throat) doctor called to tell me that the biopsy of a lymph node removed from my neck contained squamous cells that were cancerous. The cells originated from somewhere in my head/neck area -- some place other than the lymph node itself. (In future postings, I'll define and/or explain the new jargon, concepts and gizmos that are entering my life as a result of this diagnosis.)
In telling my family and friends about this diagnosis, I have found a deep and deeply nourishing well of compassion, love and support. While I don't recommend getting a cancer diagnosis, I must say that my life is considerably richer as a result of my new situation.
I've also had requests from a far-flung group of supporters to keep them informed as to how I'm doing. They tell me they want to know everything. So, rather than trying to telephone and/or e-mail dozens of people trying to keep them up-to-date, I've initiated this blog.
In it, I hope to keep everyone who visits up-to-date on my health, but I also plan wander a good deal farther afield: what the technology is like that's being used in my behalf. What the doctors and other health professionals are like that are taking care of me. How this life-changing episode in my life started. What I'm thinking about life and death, sickness and health. That sort of stuff.
The diagnosis has given me a new clarity that has been a precious gift. Things that seemed so important only days ago have drifted off my radar screen entirely. Other things that I've been taking for granted now lead me to a place of profound gratitude and peace. I want to share this as well.
Thank you again for coming. I hope to keep this blog interesting, informative, and -- as often as I can -- funny. And I invite all of you to comment on what you see written here. (Some of the blog procdeures may seem a bit arcane. Please let me know at the e-mail address below if you're struggling to comment on a posting.)
My e-mail address is GotaJugl@msn.com If you'd rather send me an e-mail than comment on a posting, please do that. I'd love to hear from you.
In telling my family and friends about this diagnosis, I have found a deep and deeply nourishing well of compassion, love and support. While I don't recommend getting a cancer diagnosis, I must say that my life is considerably richer as a result of my new situation.
I've also had requests from a far-flung group of supporters to keep them informed as to how I'm doing. They tell me they want to know everything. So, rather than trying to telephone and/or e-mail dozens of people trying to keep them up-to-date, I've initiated this blog.
In it, I hope to keep everyone who visits up-to-date on my health, but I also plan wander a good deal farther afield: what the technology is like that's being used in my behalf. What the doctors and other health professionals are like that are taking care of me. How this life-changing episode in my life started. What I'm thinking about life and death, sickness and health. That sort of stuff.
The diagnosis has given me a new clarity that has been a precious gift. Things that seemed so important only days ago have drifted off my radar screen entirely. Other things that I've been taking for granted now lead me to a place of profound gratitude and peace. I want to share this as well.
Thank you again for coming. I hope to keep this blog interesting, informative, and -- as often as I can -- funny. And I invite all of you to comment on what you see written here. (Some of the blog procdeures may seem a bit arcane. Please let me know at the e-mail address below if you're struggling to comment on a posting.)
My e-mail address is GotaJugl@msn.com If you'd rather send me an e-mail than comment on a posting, please do that. I'd love to hear from you.
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