Oral Cancer Struggle
UPDATE:
On June 22, 2016, it was declared, after 5+ Years,
I AM CANCER FREE !!!
I would not have been able to do this without all the help from my outstanding tumor board, incredible doctors, and hospital staff who took care of me during this life threatening journey!
I am currently winning this battle,
thanks to my excellent tumor board!
The Flower ~ Haik Hoisington ~ http://vimeo.com/28894792
Based On Experience,
I Believe Having A
Positive Attitude
Is Incredibly Important
While Fighting Cancer. ~ Curtis
Introduction
What follows are parts of email documenting "Oral Cancer Struggle ~ Email from Curtis."
December 20, 2010
Private stuff:
Something odd is happening with my mouth and neck.
There are only a small group of folks I am going to share this new adventure with ... and it is NOT to go beyond that group imposed circumference; in other words, "off the record," please, and I will keep you posted, about all discovery, etc.
Since childhood I have had an odd, non-transferable, genetic, immune disease that can create mouth ulcers.
During July 2010 an ulcer appeared inside my mouth, on my cheek, and I did not pay much attention to it, because, it was thought to be an immune disease ulcer.
By November 2010 I was having a difficult time eating and talking. The ulcer was not similar to past mouth ulcers, so I started keeping an eye on it.
By December 2010 I could hardly talk, my neck was swelling, and my wife made a doctor appointment for early January 2011.
My wife will be doing all groundwork and be the person, 'in the know'.
January 25, 2011
The bad news:
Remember that mouth ulcer I've been complaining about, that has been lingering since last July?
Well, my wife took me to the doctor, to see about getting something done about it, Monday.
The doctor took one look in my mouth and said, "You have cancer." He called a cancer specialist to schedule me ASAP; however, the location was inconvenient and my wife was able to reschedule me at a place, with an excellent staff of people, closer to our home.
My biopsy and treatment (if necessary) will begin soon at Cancer Center One at [snip] hospital by Dr. [snip].
The good news:
;-) I was given a medical marijuana script to deal with pain & suffering ... and ... it seems to actually provide comfort.
When I arrived home, I looked up alternative cancer cures using marijuana, and discovered Rick Simpson's video, Run From The Cure, which caused me to consider trying it, ... because, ... "It is my life; not government's."
Rick Simpson ~ Run From The Cure ~ http://vimeo.com/6965405
[Ed. Note December 11, 2012: I tried Rick's cure and NOW believe his method stopped the growth of my tumor, until it could be removed surgically.
I know Medical Marijuana reduced my pain and nausea; along with reducing the side affects of my radiation treatment, and it allowed me to regain my body weight, which had dropped to 116 pounds.
PLEASE VIEW THE "RUN FROM THE CURE' MOVIE LISTED ABOVE!]
There is always the possibility this is immune disease related; which I lean towards, and as far as being 'bummed out', or anything like that, it has not crossed my mind. My sense of humor still dominates my attitude.
January 27, 2011
On Jan 26, 2011, at 10:19 AM, Sister-in-law wrote:
I hope you don't mind my having sent your e-mail to the kids. The Center looks beautiful and am glad it's close to home. [Elided part about her losing sleep due to my current dilemma.]
Dear Sister-in-law,
Nope, I don't mind.
;-) Now for a senior moment: When I told your sister I had "Informed the Adults," she reminded me "The kids were now adults, too;" causing that light bulb to re-light, ... and ;-) the Homer Simpson "doh," I imaginarily uttered, could have probably been heard in your state, as I thought to myself, "God, I'm acting like my parents."
There is another thing I wanted to mention about you loosing sleep, Sister-in-law, over this new journey I am on, so here is where my head is at.
When your sister and I celebrated my 30th birthday, I told her "I did not honestly believe I would make it to 30" (remembering that old '60s phrase, "Never trust anyone over 30"). I also explained this 'limited trust' attitude, sort of, moved me into life's "fast lane" .... and that, "if I had known (I'd make it to 30) ... I probably would have said no to a number of paths" I traveled. I also believe I said the same thing on my 40th, 50th, 60th, etc. birthdays. (-;
I know we have all lived exciting lives (if one wants to stand back far enough and take a look) and I am not saying mine was better or worse than anyone else.
(otoh/;-) I traveled a path most of you did not travel, nor will be able to travel, and had an incredible time, most of the time, and, ... to this moment, even though I made my share of mistakes, ... would not give up one moment of that traveled path [period].
I had too much [work & play] fun ... and ... as I have said before, "To me, it doesn't make any difference if I'm sitting in the back of a limo or shoveling horse shit; as long as I am happy, ... and ... fun usually equals happy.
My point is, this whole, possible, cancer thing is nothing more than a life speed bump or "sleeping policeman," as called in Jamaica, ... and even though I could have probably done a better job with life, I am totally satisfied with what has been accomplished, and am good [happy] with myself at this moment [word]. ;-) In 'hippy terms', I've had a "far out life, during one of the most fascinating times in world history" (as we know it).
If something should go wrong, well, ;-) that's life, and I'm fine with it.
;-) Now, get some sleep == I'm fine.
P. S. ;-) Dear Kids, I'm Cc'n this 2U4 catch-up N my apologies 4 forgetting U were adults. Luv, Tio [snip]
February 2, 2011
Today I had my mouth ulcer biopsy and the first thing the doctor said, when he looked in my mouth, was, "You have squamous cell cancer." So now I'm batting 2 for 2 under the 'Dr. says, you have cancer' scenario.
He also mentioned extensive surgery, radiation treatment, and chemo, but is not the final voice.
The biopsy was not pleasant and they're trying to get results back before the weekend. They said they would call the moment results were in.
The lymph nodes on the left side of my neck are swelling, there is, what looks like, a new ulcer now starting on the other side of my mouth, across from the other one, and I have been scheduled for a MRI.
I took my first pain pill two hours ago, and it still hasn't 'kicked-in'.
As some of you know, I have never liked pills and am now on pain medication, which I will only do until my visit to Cancer Center One. (fwiw) Medical marijuana; which, besides being able to divert my attention from pain, gave me the patience to sit and type this.
Here is a Squamous link for the curious:
http://en.wikipedia.org/wiki/Squamous_cell_carcinoma
In the meantime, my wife obtained me an appointment with one of the better immune disease specialists; which is what I believe this whole thing is really about.
(fwiw) There are similarities between a Behcet Disease mouth ulcer and the Squamous mouth ulcer. I mention Behcet Disease because it has the closest definition to my personal immune disease.
If the biopsy comes back benign, then I am back to square one; however, if it turns out immune related, there is a steroid that will clear up this trip within a few weeks, and ... the new steroid has less bad side effects than the older ones; meaning, I will not hesitate in taking it.
People who have Behcet Disease do not usually get Squamous cell cancer because it is rare and if it does occur, there is a milder treatment that works.
Here is a Behcet link for the curious:
http://en.wikipedia.org/wiki/Behçet%27s_disease
My appointment with the immune specialist is next week, the cancer specialist is the following week, and as I said, the biopsy results may be back by Friday.
Talking hurts and is becoming increasingly harder.
My attitude is good and I'll keep you posted.
Thank you for the support.
February 2, 2011
;-) Continuing with 'never a dull moment'. Between the last time I wrote and now, I have been to the hospital in [snip], where I received a blood test in preparation for two MRI scans; one of my head, and one of my neck, which, if the paper work goes through, will be done tomorrow. The process of my evaluation seems to have speeded up.
As far as pain medication ... a friend, who has been through this, and is just finishing with cancer, wrote she had a hard time dealing with a mouth biopsy when the local wore off, and that it took a while before the medication took hold.
I ended up getting a double biopsy and the two areas where they sampled are sore, and can still be felt, but I assume the medication is knocking out more pain, than I realize.
It was a long day; meaning, perhaps I am too tired to tell what is going on now. I am still up because my next pain pill is at 9 PM and my mouth and neck are throbbing at the moment.
I can't remember if I ever told you this story, so I will take a chance on repeating myself.
During the mid '70s I was having a lot of A.N.A. attacks, from the immune disease, which hospitalized me. At that time, it was still not entirely known what was going on with me, and there was concern about my future.
Wavy Gravy got wind of my dilemma and took me to see Norman Cousins; the guy who had been diagnosed terminal and rented every funny movie he could find.
Mr. Cousins ended up laughing himself back to health and wrote a book about it. I enjoyed meeting and chatting with him. He was a regular, nice, guy. (fwiw) Wavy would always say, "If you want to get serious about Nobody, talk to Curtis." (-;
February 8, 2011
Yesterday was a long day. I went to see one of the more recommended immune disease specialists in the United States.
Honestly speaking, I could have done without the trip, but it was necessary, and if all goes well, I'll have support from two of the better cancer centers in our area.
The immune specialist said, "That is not an immune ulcer in your mouth, that is cancer;" putting me in a 3 for 3 cancer diagnosis. He also said I had "an odd immune deficiency" and that they were "going to figure out what it was." I then went through another series of blood tests. Apparently, the alleged cancer and immune deficiency will have to be treated together.
Results from the biopsy and MRI have yet to be disclosed, ... sort of, pissing me off, because they said Friday ... and this will be the final cancer diagnosis. I am still holding out and thinking immune related, because of all previous mistakes performed on me, many years before, ... that were actually immune related.
Next week I go to Cancer Center One to 'find out the bottom line' and from what I understand, this process of cancer discovery will speed up even faster, once that is done.
I have now been told twice, by doctors, this procedure will involve "extensive surgery, radiation treatment, and chemo."
I'm tired and hurt, but am doing fine mentally.
February 8, 2011
The phone rang at 6:45 PM. After greetings, the doctor said, "Results from your biopsy came back positive."
So, I'm batting 4 for 4, this no longer baseball, and we now have a winner: I have oral cancer.
As it stands, I have to deal with immune deficiency and cancer at the same time and all my current and past medical history are being shipped/faxed to the cancer center.
If my appointment does not get moved forward, I'm still scheduled for a visit early next week at Cancer Center One and the only problem I see, is ;-) losing my remaining hair.
My wife said the doctor told her, "There are so many cases of cancer showing up right now, there are so many cases."
So ... the path has become a little harder and :) that's life ... I'll keep ya'all posted.
February 25, 2011
On Tuesday morning I met with my radiation oncologist for an evaluation, question and answer session. I ended up needing scan results before he could make recommendations, but he did say ;-) I had cancer.
Since my PET/CT scans were scheduled for later in the day, we went to town and checked out art galleries.
It is at this point I would like to point out some surrounding circumstances.
Because of the size of the tumor in my mouth, it made eating difficult, and I had to find stuff I could swallow without having to chew, which is not as easy as it may seem.
Anyhow, the twenty-four hours leading up to these scans involved a lot of instructions ... and the diet was for someone who was NOT vegetarian; severely limiting what I was able to eat.
My wife made me a big pot of asparagus soup and something to drink (no fruit drinks were allowed). Because the tumor emitted pain I could not handle, I surrendered and continued taking pain pills, which kept me in a constant state of nausea and dry heaves. (otoh) Medical Marijuana [MM] was able to dissolve those wretched side affects.
The end result of my visit was:
1) Cancer Center One suggests radiation and chemo may be too dangerous and that microsurgery and plastic surgery (I will have part of my face rebuilt.) are their alternatives. I am being referred by Cancer Center One to Cancer (Microsurgery) Center Two.
2) My immune disease has resurfaced and my new count is 3+ times higher than previous A.N.A. (antinuclear antibody) counts.
3) Cancer Center One is going to prescribe an antibiotic for the immune disease, but want me to talk to the new folks about prescribing the steroid. I should also mention there is a specific path when treating cancer on a person with immune problems.
4) Cancer Center One is going to prescribe some kind of patch that goes with pain medication, that will help me cut down on the amount of pills I have to take, and recommended various ginger related products to control nausea ... which I will take along with MM. (btw) Someone loaned me a very expensive smokeless pipe, that is quite amazing, and works great. The radiation doctor knew more about it than I did and thought it was a good idea.
There was probably other stuff that my wife probably remembers, as I am going through one of my 'woozzies' [A sort of a dizzy, sick to my stomach feeling I get every 10 minutes].
In the meantime, I started reading about experimental treatments not involving radiation or chemo, and discovered an approved research center that fascinated me.
I did some research on it, saw their results were good and that they were specifically set up for a person with oral cancer. I sent some of the info to my wife, who became interested because their procedure did more than slash/poison/burn, and ... was far less intrusive.
The research clinic is in another state and I will probably submit my medical records to them, for consideration, as it appears I may be a good candidate. This could also potentially eliminate microsurgery and plastic surgery.
This is the best I can do or remember for now and typing is getting hard. ;-) My head is tired, but in a good place.
February 28, 2011
Today has been interesting, to say the least.
I spoke with the radiation oncologist and oncology surgeon from Cancer Center One and here is the gist.
1) There now seems to be a matter of urgency to get me into Cancer Center Two, 'where all of my problems can be addressed', because, "If the tumor gets larger, there will be complications."
2) It was emphasized, again, radiation and chemo therapy might be too dangerous for me and they have been moved into the 'last chance' mode; meaning, if surgery can not be performed, they will try and build some sort of protective device around the outside of my tumor area and see if it works, using poison and burn [chemo and radiation].
3) The oncology surgeon said he could perform the surgery, but would have to remove part of my face, and they do not have the facility (plastic surgeons) to rebuild it 'on the spot'; whereas, Cancer Center Two could do this, emphasizing my "immune specialist was near there, and all of my current doctors were affiliated." One other thing, ... my immune disease is starting to complain and my A.N.A. count keeps rising.
4) I finally found out I have T2 N1 Stage 3 cancer
5) Both oncologists believe surgery will remove the cancer and that, maybe, 'a single lymph node in my neck may need to be removed'.
So ... there is much to consider, because I am still interested in Cancer Center Three and guess I will visit with Cancer Center Two to see what they have to say.
I have to go lay down now, for a while.
March 3, 2011
The phone rang a little while ago and ....
1) I have been accepted as a patient at Cancer Center Three, in another state, to try an experimental, LESS INTRUSIVE, cancer removal method. ;-) In other words, my face will not be removed, rebuilt, and restored under this particular method.
2) My specialist is Dr. [snip]
3) Cancer Center Three has the majority of my recent medical records and are awaiting discs of all scans performed on me.
4) The first phase of this procedure, at the end of March, involves a new series of scans/tests that will take from 3 to 5 days as an outpatient (maybe, because I was not absolutely clear on this) and there will be a meeting to decide if they can proceed. All in all, everything seemed very positive.
NOW ... because we exist in duality, ;-) there are always 2 sides to every story, and here is where it starts to get a little confusing.
As previously reported, 3 doctors at Cancer Center One urged immediate action for microsurgery, at Cancer Center Two, and are supposed to be opening a door for me as I type.
Yesterday my wife spoke about this alternative method offered by Cancer Center Three with one, or two, of the specialists at Cancer Center One and they were more for microsurgery (ASAP) and did not think the alternative idea would work any better than their plan.
Based on personal research, I knew Cancer Center Three was known for outstanding research and praised a lot.
Finally, before anything starts in another state, we have to make sure they are aware of my immune disease (which is currently reeking havoc) because it plays an important role in treatment. There is also concern microsurgery could trigger a severe A.N.A. (antinuclear antibody) attack, which could mess everything up. The doctors from Cancer Center One keep brining up, over and over, that my, "immune specialist is also connected to Cancer Center Two."
I did some more research and it looks like Cancer Center Three has staff specifically covering cancer patients with immune disease.
;-) Decisions, decisions ...
March 3, 2011
Never a dull moment ... and before I get into it, a little story.
;-) Dealing with cancer is somewhat fascinating to me on a string theory level; where, extra dimensions are accepted.
Yesterday, 'trying to do the right thing' within burro-crap-si (sic); i.e. bureaucracy, became frustrating for my wife, who has taken days off from work, and 'fielded' many rigorous tasks in scheduling, making sure my appointments are kept on time, picking up my medication, etc. ... So ... I explained a military term called, "hurry up and wait" and told her it eventually becomes a "water off a duck's back" reality. In other words, 'not to worry, it will all work out'. I then brought up a story I tell often relating to choice, I call, "Crossroads," ... ;-) and it goes like this.
There are a lot of spiritual oriented folks who use the term "everything is perfect," often, and, ultimately, this would piss me off because I originally thought it was an easy copout; until i realized, "choice occurs before perfection," which made it "all good." (-;
Anyhow, an extension of this perfection is a perspective of reality that pertains to a set of dual realities: "new experience" & "there is that one again," which are quite helpful in picking through one's life learned discrimination 'bag' of "what makes one feel good, or makes one feel bad."
On occasion, one will arrive at a crossroad where direction is not clear and not know which path is correct to take.
I have personally experienced, if one does all that is available to do (for any given), incorrect paths will fall by the wayside, leaving one clear path.
I learned this from Richard Alpert, at his Dad's house in New Hampshire, before he became known as Baba Ram Dass. Richard also told me, "If one gives all they have to give, in order to make something better, and it does not work, it is no longer their problem." (fwiw) Understanding that has been incredibly helpful for me.
I then tell my wife, "All we have to do is pursue what gets tossed at us, when it gets tossed, and according to how things have worked in the past, what is about to unfold, should unfold easily." I also promised, with her support, "I would be okay."
;-) End of story, new news follows, and how it ties into the above.
Shortly after I sent my last email, the phone rang again, and it was the radiation oncologist from Cancer Center One, who has been doing most of the groundwork for me ... and he:
1) Thought everything was "in the works" for Cancer Center Two, when he spoke with my wife yesterday, and discovered nothing had been done, as he thought it was, and apologized.
2) Said "Cancer Center Two could not take me until March 16th," and "thought that was too far in the future;" once again, stressing time was now an important factor. He also apologized, again, for the delay.
3) Said, "Had he known this in advance, he would have scheduled me at Cancer Center Four (where he previously worked as part of what became my tumor board, before changing hospitals), and could get me in there next Thursday; in front of a cancer review committee," ... 6 days earlier than at Cancer Center Two.
4) Said he, "would schedule it" and wants my wife to call this afternoon or tomorrow.
As it stands, Cancer Center Two is out, Cancer Center Four, Three, and One are in and I am back, waiting at the "crossroads." (-;
The cartoon I see in my mind is, 'patients portrayed as ping-pong balls on a large green and white stripped referral table of life, with a net across it, and doctors holding the paddles'.
March 11, 2011
My journey to Cancer Center Four yesterday was 'a trip', to say the least.
We got up at around 1 AM, headed for Cancer Center Four around 3 AM, and arrived around 7 AM for my 7:30 AM check in.
I was scheduled to be reviewed by my probable tumor board, and rather than go through all the motions of what occurred, I'll do a minor review:
Remembering Cancer Center One had referred me to Cancer Center Two because they felt slash/poison/burn was dangerous for me, and then, having been re-referred me to Cancer Center Four, because of "urgency," I found myself in exterior conflict over direction.
The 'bottom line' at Cancer Center Four was:
01) Tumor is, "incredibly, extremely, aggressive."
02) Tumor will have to be cut out before it hits bone or lymph nodes in neck.
03) May not have to slice my cheek, but, "if tumor becomes more aggressive, than it already is, my face may need to be cut and rebuilt."
04) Part of my left wrist will be used to rebuild my mouth. [Ed. Note: It was decided, later, my leg was a better choice.]
05) All lymph nodes on the left side of my neck will be removed.
06) Neck will be cut.
07) I will require 6 to 8 weeks of radiation treatment and possibly chemo (this will be determined after the operation).
08) I would participate with a new addition to tumor board; which was, dental consultation.
09) My teeth will be removed after tumor surgery, and before radiation treatment, because 'radiation, near teeth, will kill them in the jaw, and make them harder to remove' later.
10) I'll be in bed at Cancer Center Four, at least, a week, or more during the operations.
12) At the end of the day I was scheduled for meeting those involved with the operation, on March 21, when they would tell me operation dates.
After all of this, with me totally feeling ill (mouth and stomach hurt), we make the long drive directly back home; bypassing other plans.
When we arrive, there was a message on our answering machine, updating our last conversation, with a please reply when you hear this, from Cancer Center Four.
Apparently, after we left, there was another meeting and my review was moved to the following Monday (March 14) and my first operation scheduled on Tuesday (March 16), due to the "incredibly aggressive tumor."
To simplify and shorten this note, I felt competent about the head of my tumor board, who was also my micro surgeon, and lead oncologist, who told me (using my words), I would not be able to 'ride it out', if I chose to ignore the tumor, and that I would probably want to kill myself in 6 months, if left untreated. He actually said I would "hate my decision, be in incredible pain, and it would be too late to do anything, at that point."
When I asked, he admitted the "incredible pain" (again in my words) "could be masked with drugs," but also added "and what kind of life is that?"
That's all I can get out now ;-) as the new medication is starting to 'hit' (I was put on very strong pain medication at Cancer Center Four and took the first one about 20 minutes ago.) and typing is getting funny (I'm making a phenomenal amount of errors).
I'll send out an update Sunday or Monday and let you know what I decide.
I'm still in good shape with my attitude and mind; which reminds me of another story.
I had to do an exam where a camera was inserted in my nose, that went into my body.
The young resident doctor was being as gentle as possible and knew it was unpleasant to me.
After he finished, and removed the camera from my nose, I looked up at him, with my eyes moist from the procedure, and said, "Well ... At least you could have bought me flowers and candy if you knew we were going to have nose sex;" causing everyone in the room to burst out in loud, hardy, laughter. (-;
It is also important to know, if it were not for my wife's help, ;-) I would be up shittycreek, without aforementioned paddle. (-;
March 11, 2011
Short and to the point.
Due to a number of reasons I have selected Cancer Center Four [CC4]. It is also worthwhile to know I did research many years ago, at another facility related to CC4, before I retired.
Prep Monday.
Surgery Tuesday, 5 to 10 hours, or more, depending on discovery.
Recovery at hospital, 7 to 10 days, or more, depending on discovery.
Surgery to remove teeth, not scheduled yet, but has to occur if radiation is needed.
6 to 8 weeks, 5 days a week, of radiation treatment, if needed and at this point, no chemo, but that could change, depending on discovery.
Currently, we are not at the ranch because it is too remote and I apologize for not handing out the current phone number. == Talking hurts and ;-) Nobody seems to understand that.
I am supposed to recover, and when I do, I will get in touch. In the meantime, my wife will be 'the one in the know', and if you have a specific question, email her.
Finally, one of the things I have observed over the years was, "mind set," meaning, folks who I have met in the past, who have survived cancer, have always had a positive attitude and that is where I am at !!!
Left side, face and neck, after the first major operation,
with one drain removed.
Dark marks above beard are
other side of where the tumor was removed.
March 28, 2011
Dear Long Time Friend,
First, I wanted to say I totally understand your hospital 'thingy', am aware of the changes it must have put you through, and very much appreciated your visit. It meant a great deal to me and your card was most excellent, thank you.
We just got back from CC4 again and I am not feeling good enough, at the moment, to explain the last series of events... so here is a short version.
24 hours after I returned home, the first time, my neck developed something about the size of a grapefruit.
Growth, as large as a small grapefruit, appeared on lower neck.
We sent pictures to the surgeon, and were requested to return to ER at CC4 and it was at this time I sent you the short note.
I spent a considerable amount of time in ER and had an emergency procedure (bedside operation) performed. This was Wednesday night and they finished the operation sometime after midnight.
I was readmitted to the ward where you visited.
On Thursday I had a second emergency procedure (bedside operation) performed, because the one done in ER did not work. This one did not work either, so on Friday I had a second major operation.
After 2nd major operation:
Bandages cover 2 drains left in neck, that were removed later.
On Saturday morning all the major test results came in and I am happy to say all the cancer was eliminated in my mouth (under the 1st operation) and there was no sign of cancer in the lymph nodes they removed.
Saturday afternoon my immune disease unfortunately kicked in, but that is too long to write about and when I get around to my next email I'll explain that.
This afternoon I was allowed to return home, but will have to go back to CC4 wednesday, or sooner, as it appears there is an IV infection appearing on/in my right arm which is quite painful.
To recap, I've now had 2 major operations and 2 minor operations, the cancer appears to be gone, and have been told I will NOT have to do chemo, but will have to do radiation treatment for 6 to 8 weeks.
If the thing that is going on in my arm goes away, then the next thing will be to have all of my expensive teeth removed, because the radiation will kill them, and they do not want them to fuse with bone in my jaw.
That's about all I can get out for now, because I really don't feel so well at the moment.
Area where skin graft was removed from leg and used to rebuild face.
April 9, 2011
;-) Typed under the influence of 'their' pain medication, which I am slowly weaning myself off, and (fwiw) Medical Marijuana does appear to constantly provide comfort (for me).
This past week has been a long one, with a series of appointments at CC4 (Monday, Wednesday, Thursday, and about 15+ hours of driving time), in prep for the next phases (teeth removal and radiation). In a previous email I wrote:
What I had emphasized to my Tumor Board/surgical team in the beginning, "Take the most extreme view of what it could be, and then apply it to me." was initially ignored, but at the end was accepted due to the number of odd things which occurred with me. In turn, my case was presented to the entire Tumor Board on 31 March 2011.
I may have mentioned this in the past, but can not recall: anything dealing with (my personal) health matters, etc. I seldom research, as to not influence or jade my personal view. Sort of an "ignorance is bliss" approach, which allows for uninfluenced reporting of anything related to recent performed procedures; like after effects, side effects, symptoms, etc. In other words, I never looked up anything related to cancer; with exception to cannabis and cancer, from the moment, in January, where the doctor, looking in my mouth, said, "You have cancer."
;-) On another note, I have personally heard, "You are too smart for your own britches" and/or variations of that phrase since I was 5 1/2 years old. So ... a few weeks ago, it occurred to me NOBODY really knows all that much about cancer, else there would be a cure by now, and in my mind, this opened a door that made cancer "fair game" for me to look at. Currently I am still resisting personal research, but it is getting harder, due to what remains of my damn intellect. (-;
There is a dilemma that comes from my immune disease vs. oral cancer.
In the past, my ID (ID = shortcut for immune disease) would appear as 'other things', which got treated for their appearance, ... only to discover it was ultimately immune related, and one of the mistakes made with me (before ID was established) was to prescribe heavy antibiotics, which ended up inhibiting my chances of survival if the ID would attack my kidneys or liver.
At that time, I was told "Take this experimental steroid or expect to die in 2 years." I did not like the alleged side effects offered by the steroid (there was a possibility I could grow breasts), so I chose not to take it, and if you recall, this resulted in us spending a year on a sailboat and buying a ranch, where, during the 2nd year, I got a lot of things done, and technically speaking, cheated death for over 20 years.
During my current cancer adventure, when the tumor appear last July, I/we thought it was an ID mouth ulcer. Had I thought anything else, I would not have waited until January to find out what it was.
During the operations I fell into a less than 4% category with the swelling that occurred on my neck (there is still no explanation for this) and less than 3% category for not having cancer in my removed lymph nodes, which got all kinds/variations of "you are a very lucky person" comments from 'those in the know'.
On the upcoming dental surgery (scheduled for 18 April) they are going to remove all my expensive teeth, including 4 wisdom teeth that have never surfaced. (fwiw) One wisdom tooth appears to sit on a "major nerve."
There will be two dental surgeons attending "because it is delicate work" and they will have all the possible stuff (for any scenario) in the operating room. They also mentioned taking a 3D shot of my jaw, so they can "attempt to pinpoint" the exact nerve location, before removal (something about jagged edges touching nerve, or something similar to that).
New technology allowed me to see the errors of a previous periodontist, oral surgeons, and one dentist (the guy who conned me into getting my old fillings replaced back in the '70s and destroyed a number of my beautiful teeth) ... allowing my suspicions of lousy work to be confirmed. It also appears one of the oral surgeons shaved part of my lower jaw bone about 1/4 inch, for some ??? unknown reason, which prompted the surgeon to tell me, "Your jaw might break during this operation," but they will have 'stuff', standing by, to repair that if my jaw should break, ... yada.
I could have done without hearing about dental procedures because it opened old wounds ... that we do not forgive or forget.
On another note, the surgeon said I was "totally cancer free," but that he would like me to do radiation therapy because of the "aggressive nature of my oral cancer tumor."
When I asked, "What if, after I go through all of this stuff, the cancer comes back?" he said, in my terms, "end of story," meaning if it does reappear, it will be fatal.
Guess I will follow through with what my surgical team wanted, even though my intellectual side wants to argue.
May 2, 2011
The past few weeks have been more intense than previous 'after operation' periods. The reason why I have not corresponded until today is because there was more pain and nausea involved with the last operation. This morning I felt good enough to sit down and construct this email.
Two weeks ago, on Monday, April 18th, I went in for my 3rd major operation, teeth extraction. As usual, it was a challenge for all involved.
When we checked in, I was told my operation probably would not happen until 4 to 6 hours later due to the number of operations scheduled that day, and one of them was taking much longer than anticipated.
Fortunately, my wife had the insight to register us at a motel, before we were aware of the delay, and this was done so we would not have to drive back immediately after the operation. I was also told I would be moved into the operation prep room ASAP, "So i could sleep until operating time."
In the prep room, after going through the standard 'question-answer/vitals routine', my main extraction surgeon came in and said the specialist surgeon; the one who was to remove my never surfaced (impacted) wisdom teeth (delicate operation), was not feeling well ... and ... rather than 'do me later' they were going to put me in the operating room next; else, the whole 'thing' would need to be rescheduled.
About an hour later (I think, because I had been started on IV & medications) my main surgeon reappears with another doctor, who introduces himself as the person who will be doing the 'delicate work', and that they were "prepping the operation room." The surgeon scheduled to do wisdom teeth removal (number 2) had become more ill, was not able to operate, and I was now going to be operated on by number 1, to remove the wisdom teeth.
It is also worth knowing I could only open my mouth about a half inch, and after hitting me up with lots of muscle relaxers, my mouth was, for lack of better words, jacked open as wide as they could get it, and locked down, which added to my already heavy 'pain factor'.
The operation was a success and (iirc) we got back to the motel a little after 7 pm. (fwiw) They also left one wisdom tooth because "It was not in the way and there was nothing wrong with it."
The next morning, Tuesday, April 19th, we drove back north, my mouth & neck, with tumor and teeth removed, severely hurt and I was extremely HUNGRY (Based on operation requirements, the last time I ate food was 6 pm on Sunday, April 17th). Eating was not appealing due to all the stitches in my mouth.
In my opinion, due to 3 major and 2 minor operations I was 'out of it'. In other words, I hurt more than previous operations and was, more or less, confined to bed. On another note, the dental folks forgot to include pain medication and sent me home with antibiotic mouthwash, antibiotics, and Ibuprofen. Fortunately, friends had mentioned this scenario in advance, we were prepared, and I have a comment about that. == The pain medications were the same medications prescribed for the tumor operation; however, this time, they were barely covering my pain level, and I discovered if I did some Medical Marijuana 20 minutes before I took my prescribed pain medications, depending on the amount I did, I could divert my mind from pain ... or ... go to sleep. (fwiw) Sleep had become a valuable asset in my healing/recovery and difficult to achieve. A lot of the time it was 20 minutes of sleep to one and a half hours of waking ouch. Medical Marijuana certainly helped here.
So, ... from Monday until the following next Tuesday (a week and a day) I was a mess and stayed in bed. By Wednesday morning I was just starting to feel better, when we had to return to the hospital for a post operation inspection. When we arrived, I was informed stitches were going to be removed and there were a lot of them.
Not recalling anyone mentioning stitch removal to me, I did not prepare myself, and had been in the process of reducing pain medications, to the point where I was at 1/3 of their prescribed level.
Stitch removal brought tiny beads of sweat to my forehead, as each metal stitch was cut in half and removed from both sides of my jaw.
After a long 'operation inspection day' we drove, directly, back home and this (for me) was the drive that took longer that previous trips to the hospital. In other words, this time, I could not wait to get back home.
Stitch removal pain started to subside by Friday morning, which was the day scheduled for me to get fitted for radiation treatment at Cancer Center One.
At the 'fitting' I thought everything was going to be a simulation, except for a scan that was scheduled, and did not recall I was to be injected with radioactive dye, again. (fwiw) This dye stuff does weird things to my body and from what I understand, the experience is shared by others who have had it injected. Specifically, it leaves me nauseated for a few days, afterwards.
Regarding radiation treatment:
== Yes, I've been following a "to burn, or not to burn" (radiation effects in amateur radio) discourse since the early '70s and know a little about this subject, due to military stuff I was involved with, and having been into RF engineering, ... so it was nothing new (to me).
(fwiw) At one time, radiation treatment was acceptable for curing acne and during the early '50s, I had this treatment for back acne. Unfortunately, the back acne now appears to have been immune related.
== Yes, I have decided I will be going through 33 days of radiation treatment, starting the week after next week, because statistics show there are fewer people that return with this type of cancer, that go through the treatment. I was also told if this cancer does return, nothing can be done about it.
Finally, ;-) regarding the "good, bad, and ugly" of cancer; knowing I am a 'learning junkie', I feel I have observed enough to become opinionated, and am sure there are many before me who realized cancer is a gazillion dollar corporate business ... and that there probably will not be a cure, anytime soon, if corporatists have anything to do with it; remembering an old activist phrase, "Profits Not People."
(fwiw) I recorded a message off high frequency radio during the early '70s suggesting there would be a cure for cancer during 1975. If you want to listen to this old recording, click -> UFO-1974 <-, which is also located on my podcast page. Coincidently, it was also during 1975 a group of researchers discovered a Medical Marijuana bi-product that removed tumors in mice and rats, ... which is something corporate media seems to have "kept a lid on."
Unless something odd happens, I will wait about a week, or two, after radiation treatment ends before corresponding, again, on cancer matters (near the end of June).
My mind is still in a good place and I am determined not to allow this cancer adventure to "bring me down."
Radiation Treatment
July 5, 2011
It was advised, three weeks after radiation treatment stopped I would start to "feel better," which hasn't entirely happened. It is taking longer, and I assume it will be another week, but it is time for a final report, before a whole new bunch of things occur (seeing all the doctors again, getting dentures, etc.).
Although unable to get the desired photo, my tongue had a 1/2 inch racing stripe, from the left side going towards the center of the tongue, entirely through it, from bottom to top, and went from front to back. In simple terms, my tongue looked like somebody seared a steak on its side ... and it made me feel as if it was ON FIRE. The only thing that helped was a concoction of baking soda and salt my wife prepared in a quart of water each morning, which I used as a mouthwash to swish in my mouth.
During June, my radiation treatments were creating a fire that could not be put out and I spent one weekend in total agony, where I sat on the side of a bathtub, with my head over a toilet, and had the most brutal dry heaves I have ever experienced. Primarily, in my opinion, this was due to an after effect of cancer treatment that caused an incredibly thick phlegm in me. In other words, what was left of my immune system started creating a safety barrier (phlegm), which seemed to go from my mouth to my stomach, and caused gagging when it became too thick.
I did a little research about radiation treatment and discovered, based on body weight and height, I could probably get by on a minimum amount of treatments, which was listed as 25.
On the following Monday, before the 25th treatment, this is what I looked like, and ;-) the term "boiled lobster" comes to mind. [Note: My wife was putting radiation treatment cream on my neck and I believe it would have been worse, had this not been happening.]
The Fire That Would Not Go Away ~
Scars:
Removal of Lymph
Nodes & Rebuilding of Face,
using part of leg, plus:
Radiation side affects.
My wife called the cancer clinic, in advance, and told them I would like to speak with my doctor when I arrived that Monday, and fortunately, it was possible. I should also mention I dropped to a body weight of 116 pounds and that was a problem.
When my radiation oncologist saw me and heard about my dry heaves, he suggested I do one more radiation treatment and call it quits.
In total, I had 25 radiation treatments on my neck and 25 treatments on my face; the accepted minimum.
So one can see the difference, this is what I looked like 3 weeks after the final radiation treatment:
Currently Healing
Quite a difference, I would say. My beard is almost nonexistent because the majority of hair on the tumor side of my face fell out due to treatment. I am not sure it will grow back, but that is the least of my problems. There is very little scarring and the rebuild on my cheek looks much better. I have a large dimple, which will eventually go away, as well as the swelling.
What I have been told = healing time in spurts:
3 weeks, or more, until radiation treatment symptoms disappear = finished 3rd week and assume one more before I notice it,
6 months, or more, before saliva glands and taste buds return (cmf**),
6 to 9 months, or more, before facial, neck, and jaw nerves return,
4 to 6 months, or more, before denture replacement can begin.
[** cmf = crossing my fingers, because some may not return ... and that goes for nerves too.]
As long as I am into photos, here is a picture of some of the medication I took. Some of those bottles contained over 100 pills and if you have not had this conversation with me, it is worthwhile knowing, I NEVER TAKE PILLS; including headache pills, because I, personally, do not trust them.
Medicine
Sometime, if you have never done it, watch the national evening news, on a network station, observe all the medicine commercials, and listen to the nice music, while evil side effects are mentioned. If your memory is like mine, then you will remember that in a few years there will be these lawyer commercials suing drug makers for these same pills; that have since, injured, or killed, people.
Speaking of things I do not like to do, here is something I have grown to dislike because it is the only thing I am able to eat, for now. (fwiw) 6 "Ensure" cost $10 and I am supposed to do 7 a day. I did get a prescription for "Ensure," and the insurance company refused to cover it, ;-) but it was worth a try.
Liquid Diet, for almost one year.
Summing it up, ... through all of these emails, I have been good, behaved myself, and there have been no soapboxes or rants. (-;
In closing, for now, I do have something I want to say. It may sound like hindsight, but may be good information if one should ever have to deal with a similar (cancer) experience/adventure. ;-) In my opinion it is necessary to reinforce the old saying "a little knowledge can be a dangerous thing," as being a true statement. (-;
In my opinion, it will take a long time for a medical cure for cancer to arrive because cancer is too profitable for corporations; just like tobacco and cigarettes are. However, there will be leaps and bounds in the development of 'things' that will aide cancer recovery.
Speaking of Opinions, Everybody Seems to Make Mistakes:
Camel cigarettes had the largest booth at American Medical Association's 1948 convention; boasting, "More doctors smoke Camels than any other cigarette." which is a splendid example of "Profits Not People" and should be a 'Wake Up Call' for HONEST Evaluation of the Dangers and Hazards from Cellular Telephones and effects of amplified microwave frequencies emitting from Cellular repeater sites. -- "It's A Matter of Trust" = Citizen's Against Second Hand Cellular Phone Radiation (CASHCPR).
You're like part of the family, Doctor!
More Doctors Smoke Camels Than Any Other Cigarette
In my opinion, here is what should have happened (to me) and I have verified what I am saying.
[A Tumor Board is a group of various doctors who look at a cancer patient, together, discuss observations, and plan the entire operation; including radiation & chemo, in advance. It is also worth knowing when I was observed a dental team was included, because radiation treatments would kill my 'expensive teeth'; which were removed in advance of radiation therapy.]
My Tumor Board was in the process of getting introduced to a new dental side of 'their board'.
The "dental side" was less than 3 months old and, in my opinion, could have scheduled the tumor removal and removal of lymph nodes the same day as teeth removal ... because they all used the same stuff for operations; including anesthesia and operating rooms.
This would have allowed me to heal longer, before radiation treatment, making it less stressful for me.
What actually happened was, I had 2 major and 2 minor surgeries on my neck and mouth, a few weeks to heal, then the dental extraction, and given a few weeks to heal before radiation treatment started.
Tubes = Somebody would make a fortune if they designed a tube system, for the body, that did not create 'focal stress'. The feeding tubes in my nose were like Hell's spaghetti, shoved down my throat, and where they stitched the tube to my skin, to prevent it from pulling out, really hurt.
Medicine = I wore two extra red wrist bands during all operations that said "allergy." One of my allergies is morphine, which makes me terribly ill, so they gave me derivatives which lesson the experience, but still cause severe nausea. So, ... they gave me anti-nausea medicine to go along with it, which worked half the time. == One would think, by now, there would be a less offensive pain medication, I could have used.
A number of people said to me, "A 100 years from now your cancer procedure will be considered barbaric!" and I have to agree. Personally, in my opinion, hospital staff involved with some tangent of cancer health need to spend some time in a cancer hospice.
Liquid Food = Somebody would make a fortune if they developed a drink similar to "Ensure" with all the vitamins, protein, and body building 'stuff,' that tasted good and worked better.
Speaking of taste, I feel very sorry for folks who have, for some reason, lost their taste buds. Currently mine are gone, but should return. My personal experience is, without them everything tastes like salt.
Spare Time? = It is almost impossible, in a hospital environment, to be private and I heard a lot of stuff.
The one thing I heard a lot ... and mostly from elder folks ... was, "I HAVE NO ONE TO TURN TO OR HELP ME." So ... if you have a little spare time for volunteer work, there are a lot of single, elder, adults who could stand your help, and it is my intention to give, at least, one morning or afternoon a week doing chores for these folks, when I am totally cured. What I intend to do is contact the closest cancer center and have them direct me to where I would start.
While I am on the above subject, I will admit, again, had it not been for all the help from my wife, I probably would not be typing this !!!
Short Timers Chain = In the Navy there was a small chain; the type made up of little balls, that was usually worn on a belt loop, and usually had 30/31 'balls' on it, for the last 30/31 days of one's enlistment and for each day passed, a ball would be clipped off the chain. I was tempted to wear one for radiation treatment; using it for a 'countdown' scenario. But, I did not, because by the time I got to radiation treatment I just wanted to be finished with the whole thing. ;-) What I did instead, was remove all calendars, and slept most of the time (which (to me) was necessary). Knowing how long radiation treatment was going to happen (for me) made it longer ... and shutting that out of my mind was an asset.
On a humorous note, the weekend after I was really sick, and the Monday after my final radiation treatment, I went to a beauty salon and had my fingernails painted black (Think "Rolling Stones" ("Paint It Black") and ;-) Ozzy singing "How?":
Ozzy Osbourne sings John Lennon's "How?" ~ http://vimeo.com/18479498
Medical Marijuana = As you know, the doctor who officially stated I had cancer gave me a Medical Marijuana script ... and at first, I was not sure this would help.
I was wrong. Medical Marijuana [MM] was one of the biggest assets that helped during my entire cancer process.
When I could not sleep, MM put me to sleep. When I could not eat, MM gave me munchies and caused me to gain an extra 9 pounds over my standard weight. When I could not get my mind off pain, MM allowed me to ignore it, and so on.
I put MM oil on the tumor (Based on 2 Rick Simpson YouTube videos I watched.) and the tumor appeared to stop getting larger. MM butter was put in my food and drinks to allow me to eat and sleep, and smoking MM, in a smokeless pipe, allowed me to forget I had cancer long enough to make life tolerable.
I may have discovered a weight trainer, within a mile from home, I may employ, who will help me (for 3 months ?) re-tone my muscles and gain weight in the correct places. ;-) Why? Because my motorcycle weighs around 630 pounds (nuff said?).
I actually have a lot more to say, ;-) but will spare one the possibility of a probable rant. According to what I have been told, 20 years ago one would have probably been preparing for my funeral.
I need to say a big public thank you to some folks; especially to the person who loaned me the expensive, experimental, smokeless pipe, the folks who told me to stock up on pain medication, to some very special visitors, who reminded me I was still alive, and to Ed Rosenthal, THANK YOU ALL VERY MUCH !!!
I also want to thank ALL of my supporters. Even though some of you do not know one another, you are very special people !!! THANK YOU !!!
Those who know me, also know I have met, or hung out, with 98.9% of those I would call hero.
One of those heroes, and a friend, is Paul Krassner == Wikipedia page, who I have been in love with since the '60s. Paul has always been able to make me laugh, which is important to a person, like myself, who has to avoid stress in order to prevent an immune disease from activating. [Just so everybody knows, my immune disease has been worse than any of my cancer battle.]
Paul and I exchange email and I try and see him when he is in the area. One day, out of the clear blue sky, during this cancer journey, I received the following email from him, which meant a lot to me:
It says:
Curtis,
I just want to tell you that I am continually inspired by your courage, compassion and consciousness = the real Big C's.
Love & smooches,
paul
Finally, I would like to thank my wife again. Without you, I believe I would be another cancer death statistic.
Currently, the only thing I am futuristically interested in writing about is the first day I am able to eat a meal. It has been one year since I had something that I could chew.
September 24, 2011
There is a reason for the lengthy silence regarding my cancer journey. I needed to wait for some new results, which turned out fine.
When I returned for (after surgery/radiation treatment) follow-up, the head of my tumor board hit me with something that was never mentioned on my first visits.
He said, "Everything looks fine, but cancer may have gotten into your lungs, so we'll need to do more (radioactive) dye based PET/CT and MRI scans, three months after your radiation therapy is completed."
Well, that statement just about deflated my 'on top of it' balloon, but fortunately I was able to overcome that 'sinking feeling'.
He also seemed surprised & happy I had made it this far and told me, among other things, I "should be celebrating life." He was not the only one who said something like this, which gave the impression my cancer was worse than originally presented; however, they did keep using the phrase "incredibly aggressive tumor" during the initial stages of this journey.
Late yesterday (Friday) afternoon we drove to Cancer Center One, to get my results ... AND ... it appears I have won the battle (for now), as there was no trace of cancer in the scans.
I have an appointment in November, with the head of my tumor board, and he will (without doubt) verify what my radiation oncologist said about being cancer free.
There is something I would like to mention. When I sent the last email, I was under the impression I was cancer free, but had to be checked, annually, for 5 1/2 years, to get an "all clear" signal.
I will be the first to admit staying on top of a positive feeling, when one is going through cancer treatment, is somewhat difficult. I actually got 'sort of' bummed out (for the first time) with the thought of having to wait three more months to discover if I was really cancer free, or not; having been previously made to feel I won the cancer battle, and it was over.
To be fair, the after effects of radiation treatment may have had something to do with this feeling.
During this (sort of) bummed out period of time a friend and his wife arranged for a short visit.
After visiting and talking for a while, my friend suggested I follow him out to his car, which was filled with radio controlled helicopters.
He removed one of the helicopters; called a Blade mCP X, and provided a great, short, flight demonstration. Here what that helicopter looks like:
http://www.eflightwiki.com/eflightwiki/index.php?title=Blade_mCP_X
First, ... learning how to fly a R/C helicopter has been on one of my secondary 'to-do' lists for more years than I recall.
Second, ... due to cancer related fatigue, I can only sit or lay around the house. This fatigue will allegedly last for ??? years and I have been taking short visits outside the house and extending visiting time with each trip, in an attempt to improve and overcome this quirk.
Third, ... my (visiting) friend gave me a beginners R/C helicopter, that can be flown inside the house, and here is what it looks like:
Blade mCX 2 Coaxial R/C Helicopter
He told me to fly it until I grew tired of it, or moved up to a more advanced, remote control, helicopter.
I have been building models, flying control line airplanes, and piloting model boats since the early 1950s and will admit flying R/C helicopters helped remove that "sinking feeling." In other words R/C helicopter flying is fun and gives me something to do while I am in bed, healing.
Learning how to fly R/C helicopters, thanks to my friend Larry,
and building foam R/C aircraft are part of my self imposed cure.
Just so you know, my alternative to flying the mCX 2 R/C helicopter and building R/C airplanes (foamies) out of inexpensive foam board has been doing a large puzzle on the dining room table, which was given to me by another friend. I did a lot of puzzles as a kid and doing this puzzle brought back a lot of good, visual, memories.
Moving along, ... my face, after the rebuild, is starting to look better and I anticipate it will only leave a small dimple, or 2, on my cheek. The scar on my neck, where they removed lymph nodes, is also looking much better and will probably fade as years go by. My beard, which currently looks like a long, "guy fox" beard, is starting to return to the radiated areas and is dark black, as opposed to gray, which is interesting. I am trying to grow my beard back, to cover remaining scars.
On another note, next week I get to see my new teeth. I have been to several wax fittings and last week selected teeth color. Next week will be one of the final fittings, with the new teeth in place, and during the 2nd week in October, they should be finished. I am also, allegedly, entitled to as many appointments "necessary" to make them fit, be comfortable, and work for me, at "no extra cost." Unfortunately, dental insurance would only cover half the expense, I had to cover the rest, and was not happy about that. I look forward to being able to chew food again, as it has been since July, a year ago, I was able to do that.
This will probably be the last note of this series and I would like to thank everyone for all the incredible support; ... especially my wife, ... because without her, I have a feeling I would not be able to send you this final "cancer journey" note, today.
Again, thank you all, very much for your support !!!
November 18, 2011
Rough day yesterday. I had to return to Cancer Center One, to discover I probably have a stone (like a kidney stone), or scar tissue, blocking my left salivary gland, which is causing my face to balloon out every time I chew, and is quite painful.
Next week I am going back to Cancer Center Four to see about having that fixed, as it might be related to some other stuff I am dealing with.
[Note: Due to the consumption of a lot of water, eventually the "stone" dissolved, without medical attention, and my salivary gland started functioning again.]
August 3, 2012
I haven't done a cancer report for a while, so here it is, short and sweet.
They (oncologists) recommended tasks I should do to improve my condition, which I discovered were a little more difficult than proposed.
I struggled through these tasks, always doing more than what I was asked, without being stupid about it (overdoing it), and recently had a series of A-2-Z physical/digital examinations, where the result was extremely positive.
In other words, having had "one of the most deadliest forms of cancer" and "lucky to be alive;" much to everyone's surprise, I am in "very good/excellent health." [Previous quoted parts stated by oncologists and doctors; including the head of my tumor board.]
This past week was a big test (for me) because it was 2 years ago, during July, when my tumor appeared; or what we originally thought was a mouth ulcer related to my immune disease, and I have not been out, since then, except for short visits to 'test the water' and trips to the doctor.
The next step was to test going away and attending an event, so my wife and I went to Jerry Garcia's 70th birthday party, put on by the Rex Foundation, at the S.F. Giants and New York Mets baseball game, on Wednesday night, at the ball park in San Francisco.
We had a great time and I survived my journey. I will admit I was somewhat sad because I miss Jerry and attending Grateful Dead shows. Leading up to this, I had been sleeping 16-18 hours a day because of some itch medication I had been taking, so this was a 'big step' for me.
September 5, 2012
I am beginning to accept I will not return to the person I was (physically) before cancer and am dealing with the after effects the best I can.
I still spend a lot of time in bed and having been a very busy person in the past, find this difficult.
Currently, I can only sit for short periods of time and then have to lay down for a while.
More recently I have been dealing with a body rash that is an alleged result of radiation treatment and it makes me want to scratch worse than poison oak; however, working on my R/C airplane and helicopter models does take my mind off it.
My face is mostly healed now, it is difficult to tell that it was rebuilt, and the large scars are starting to disappear, except for 2 which my beard is starting to hide.
The only thing that is a problem, now, is my mouth will not open beyond 1/2 inch, which makes eating difficult, but at least I can chew.
My tumor board oncologist says there is another operation they can try, but only works 50% of the time, that may allow my mouth to open wider, but I am not sure I want to deal with that, and I still talk a little funny.
;-) Every time I want to complain about recovery, I am reminded by the oncologists I am "lucky to be alive."
I spoke with Wavy Gravy about a month ago and he was in bed with a broken leg, from a fall. We have been invited to the upcoming "Hog Farm Reunion," but I am not sure we'll be able to make it.
I am still building foamies and here is my new 9 1/2 x 30 inch Armin wing, which is 1/2 of a 60 inch wing I am building, and my next project will probably be a 90 inch wing for a glider I am planning to build:
Armin Wing Construction
Armin Wing Construction
February 22, 2015
Since I have grown tired of "the struggle," and rather than continue to send individual email on current personal events, here is a general, definitive, cancer, "waddup."
[(fwiw) As one of Internet's actual pioneers, let it be known I no longer trust using Internet, email, socnets, certain software, (new) computers or smart devices (cell phones, pads, pods), and believe during 1991 Internet started eroding into demise, when it became a corporate / government tool used for marketing and divide & conquer.]
On finishing radiation treatment and subsequent tests indicating survival from oral cancer (discovered during January 2011) I was ecstatic because, with exception to an "all clear" cancer report that should occur in one and a half years, I had once again ;-) beaten the Reaper.
I say that because I was told many times by my oncologists, after the operations and treatments, "Most people with your type of cancer do not survive," and am now considered to be a "walking miracle," but the story does not end there.
As those who are close know, I seldom, or rarely, complain about anything (-; with exception to dishonest politicians & government ;-) including physiological pain, so ... I did not bother to mention my continuing rash and string of biopsies that fortunately turned up negative, except the last one, which I do not consider serious.
In turn, I have another operation coming up soon and about a month later start photodynamic therapy.
Bottom Line: All is fine with me, except I seem to be getting a little tired of dealing with cancer related things and a little more reclusive. (btw) I seldom use a phone because my rebuilt mouth still bothers me when I talk... and :) is not personal.
Radiation Rash or ... The Rash
I want to talk about a rash that showed up on my body and what I have done about it.
It first appeared in the area where I had radiation treatment and was supposed to last about two weeks.
What was originally called radiation rash
Unfortunately, this rash has lasted from two weeks after radiation treatment and exists today (201212.29).
[Note: The rash is actually more red and pronounced than what appears in the following sample photographs and covers most of my body.]
The Rash ???
The Rash ???
The Rash ???
The Rash ???
The Rash ???
The Rash ???
I tried a lot of various itching remedies. Here are some of them:
Itch Remedies
I would first clean the inflamed areas with White Distilled Vinegar and then apply one of the above remedies for two weeks. They worked for about a week and then the itching would return.
White Distilled Vinegar
One day a neighbor, who is also a nurse, gave me a cream to try called, "ZOE ORGANICS extreme cream."
ZOE ORGANICS extreme cream
I washed the inflamed areas with white vinegar and applied the above cream. The itching stopped immediately and ... continued working beyond the one week span of other remedies.
June 18, 2013
Thank you, very much, Neighbor !!! The rash is, almost, entirely gone and so is the itching.
For a complete description of "ZOE ORGANICS extreme cream," click the below link:
http://www.zoeorganics.com/products/extreme-cream
Cancer Survivor
;-) Screw Oral Cancer (-;