I will start w/ the three emails I sent to friends before I came here.
I’ve got cancer.
It’s called Sino Nasal Undifferentiated Carcinoma (sp). It is in my left sinus. It is rare (less than 100 cases/year in USA), and ‘aggressive’.
Fortunately, I went to the doctor only about a month after first seeing some traces of blood in my spit and snot. So hopefully I am Stage 1 or less. I feel fine.
Dr. sent me to a great man, Dr. Matthew Finerman in Century City. He poked around, saw a polyp, did an MRI, did surgery to remove some of the polyp and have a biopsy done. He did not remove all of the polyp b/c that is a big, involved operation right next to the eye and brain, and if it was benign, …….why bother? It was not benign. He suspected something rare; SNUC.
A sample was sent to an SNUC specialist in NY. I guess w/ less than 100 cases/year, there are not a lot of biopsy specialists in this type of cancer.
Dr. Finerman handed me off to Marlene Wang at UCLA Otolaryngology dept. where she is a professor and surgeon.
There I had a PET/CT scan on the head, neck, and torso to see if the cancer has spread any. That was today. Dr. Wang suspects no spread, but….
On Fri I will have that second surgery to scrape out the rest (we hope) of the polyp and grind a bit off of a nearby bone where the polyp rests. Both the previous surgery and this one are like the arthroscopic surgery I had on both knees; in and out w/ tools and camera on a long needle. It’s an outpatient procedure!
Then after a couple weeks, I will commence chemotherapy. Then radiation treatment for six weeks or so.
Biggi has put on her journalist hat in regard to this, has done much research, and is now my non-degreed advisor. An advisor who loves me. I love my health/cancer advisor. I do what she says. One of the first things she told me was, “Don’t look up this cancer online.” I can see a couple reasons why; I have not done so, nor will I. But I figure for a few months I can eat (and not eat) just about anything. It starts w/ things to avoid; red meat, dairy, sugar, non-sea salt, alcohol, etc. Flax seed, green tea, etc, and ONLY healthy, safe, non-industrial food. That’s really not too far from what we do already. And really, since it’s my job now, I don’t have any misgivings or cravings for those things that will harm me.
And so, like I said, now I have a new job. It pays nothing, the hours are long, work conditions suck, but it has a great script. In it, the handsome hero ‘kicks cancer’s ass’ (Richard Pryor describing John Wayne in 1978) and goes on with his life. Being a new job, I don’t have the inclination to complain about it. It’s a good job.
Things are looking up.
Yesterday, 8/19/11, I had the second operation. It was the same thing, except this time by Marilene Wang at UCLA. Just as the first time, I feel no pain. Now I have an entire bottle of Codeine and another of Vicodin; party’s at my place!
Dr. Wang had less heavy lifting to do than my first ENT, Dr. Finerman (he had to remove most of that polyp which was filling one of those small inlets of the sinuses), but she had to be just a BIT more precise, as she was grinding (w/ a burr!) sinus bone and scraping sinus surface in order to remove ALL trace of the tumor, in VERY close proximity to my brain and eye. All this done at the end of a stick up my nose and halfway (seemingly) to the rear of my head; endoscopic (inner) surgery. Eye to TV to hands without making me a blind vegetable. Thank you, dear surgeons!
Last night my lower throat was a bit sore where the pipe w/ the oxygen and anesthesia was going in. I found out that general anesthesia will stop your breathing, so that is why the oxygen pipe is there. I forgot to ask why the heart does not stop too. Do you know?
So now I have about one week until the chemicals start flowing. I guess it will be two sessions of about two hours each where they put the pipe in my vein and open the valve. Those two weeks will be the part of this whole process that will not feel good. Just part of the job.
Here is the one cancer page that Brigitte has forwarded to me (the others I’m told not to seek); http://www.cancertutor.com/AltTreatments/Alt_Diet.html It is full of ‘facts’ and also a fair share of opinion. It is one of the pages she found w/ a lot of diet information. Such as:
Foods that contain nutrients that kill the cancer cells, stop the spread of cancer, or in some other way help treat the cancer (e.g. purple grapes with seeds and skin, red raspberries with seeds, strawberries with seeds, broccoli, cauliflower, several herbs, carrots, pineapples, almonds,
That is good for me; I have made an index card (remember those?) w/ this list to take to the store/market, until I have it memorized. But the thing that gets me about these Websites that are done by true believers is the overbearing belief in the Right Way, and the opinions as facts, and the facts that may not be stated, and the facts that may be incorrect. Sort of like thinking you know the news of the day by watching a TV news variety show on Fox or MSNBC.
So for lunch today I had some leftover fresh (not dried) kidney beans w/ tomato, artichoke in a vinaigrette of our backyard lemon juice and a little (very little – it’s $14 for 250 ml) flaxseed oil (medium). Good, AND good for ya!
And that’s the news for now, Chuck
What’s takin’ so long?!
Never thought I’d be impatient to have someone poison and burn me. But it’s what must be done.
I’ve been to UCLA a few times in the last two weeks for more tests and fittings for this coming chemo/radiation. Maxillofacial prosthetics took a look at my teeth to see if any were weak or poor. (More praise for my excellent chompers) Why? B/c the radiation will weaken my skin and bones around my teeth and if ever a tooth would need to be removed, the bone might not ever heal. Ever. I will now go to the dentist every three months for a cleaning. Forever.
Oh, another byproduct of radiation is the diminishing of saliva. That may come back in a few years. Or not. Basically, my lower head will be sunburnt, inside and out.
Other stuff: fitted trays to put in fluoride paste every night. A jaw divider/tongue depressor to wear during the radiation. A $325 device to have me open my mouth wide, as the radiation will screw up those muscles.
Here is what I’m in for on the chemical front:
“Steve, given the specific regimen we use, it would be ideal if you start XRT on a Monday. Looks like the 19th fits. MR.
Viviana, plz sched Mr. Mason to start cisplatin/etoposide on Monday the 19th. It will be in Varian later. It’s cisplatin on the 19th and 26th, and etoposide every day from the 19th to 23rd. This is standard treatment for sinonasal undifferentiated carcinoma. Thnx. MR.”
(This is from the chemo man to the radiation man and their nurses.)
I’m getting into the new diet. There are lots of great ways to eat w/o meat. It helps to have a loving wife who knows how to cook very well and is enthusiastic to explore new foods and processes and recipes. We still eat some meat, as I need the protein, and I’m an omnivore. I’m down to 168 lbs and I need the weight/muscle to make it through the punishment that is coming. We have devised lists of good anti-cancer foods, and that is almost all that I eat (Brigitte too). I’m a big juicer now that I have the $400 kick-ass slow-rpm masticating juicer (Omega VRT 350).
But now I just sort of improvise w/ what I have available. Of course, carrots, apples, ginger, and celery are usually available in the fridge. Then maybe beets, broccoli, oranges, lemons (from our tree), kale, tomatoes.
I still run and lift weights. Why not? – there is no change in my physical state currently. Just a little lighter in the left sinus. Well, that and those 7 or 10 lbs that I seem to have lost recently.
I am still working (America’s Got Talent this coming Fri and Sat). I have not told any coworkers about all this (aside from the crew I was on when all of this started). I don’t want to be written off just yet. When I get calls in the future, I will be ‘unavailable’ for a couple months. That’s all.
Enough about me for now.
I then proceed to radiation in the building next door. However, they don’t have any fancy woodwork and lighting. Or windows. This is the bunker (two levels down) where there is no way to freshen up your day w/ that hotel lobby feel. Be on time; 4 machines and lots of customers. Some of which I have to wonder ………… why bother? Come on, if you’re 55 going on 80, gasping for breath, 100 lbs. overweight, and talking like a young draftee headed into his first battle, ……………….. let it go. You had 30 years to figure it out. If you did not, why burden yourself, your family, your neighbors, and your government (ALL of your neighbors) w/ this last-ditch effort to pull a rabbit out of the hat? I can assure you; many cancers are preventable.
And then some of us get a cancer that is diagnosed at a rate of 0.0062% every year in America; Sinonasal Undifferentiated Carcinoma. I am not a Chinese nickel miner, nor a Scandinavian woodworker. Just lucky, I guess.
So I am lead down the hall to Linac C, given my mouthpiece to separate my jaw by 1/4″, lay on the metal table, put my head in the wedge, then have my head covered w/ the custom-made mold (made of mesh) of my head/face, and lay there for about 20 minutes. Very still. Oh, I forgot to mention; the mold is strapped to the table. My head does not move. I can open my eyes and lips and I can try to swallow. Give it a shot; lay on your back, mouth open, and try to swallow that bit of saliva that is running off that mouthpiece that is pushing down your tongue and keeping your jaw open. “Breathe through your nose.”
Perhaps soon I can show you some pix of this set-up. I think you’ll like it.
Dear Mr. Mason,
Thank you for the very nice complement and thanks for keeping me updated along with your friends.
Minor point — it’s Southern Chinese (hence suspected to be diet related for them as the rate changes when they move to other places and change their diet), Scandinavian nickle miners and people who work with hard woods. The latter two categories, to my knowledge, we still don’t know why for certain. Dr. Wang may know of recent explanations. Keep up the good work. Good attitude does help the immune system. The same chemicals that are neurotransmitters in the brain also regulate the immune system. I’m looking forward to hearing how you’re doing, in particular when it gets frustrating for a while about half-way through the treatments. As I said after UCLA tumor board, after the patients stick it out they are always glad they did, no matter what.
Matthew Finerman, MD
Now let’s go down, down where the sun don’t shine. They make their own harmful radiation there.
Then down this hall …….
……and then this hall
To …….. Linac C!
OK, they have done some work to make it a bit more ‘gemütlich’; recessed pink lighting, wood panelling, lots of space. But it is similar to chemo therapy; it has to hurt you to save you. Today after my 11:00 of focused sunshine (radiation) I could feel the burn on my neck. I’m now moisturizing my neck and face, something of which this acne-ridden teenager never dreamed. Of course, 51 is a ways away from 17!
The kind and helpful radiation therapists, Dameon (sp) and Kristine, ease me into this setting w/ non-rushed amiability. I empty my pockets, put in my mouthpiece, get on the steel plank, rest my head in the tray, put my knees up to straighten the spine and sort of wedge me into place, and then ……………
All you gotta do is get your mind right. I know the routine; a few minutes of calibration, then the buzzing starts for one pass, then stops, then starts for another pass, then they come out to unlock me. Yes, I am locked down from the chest to the head. Good thing too; I’d rather have ol’ Linac hit the target than my brain. Or eye.
I prefer to keep my lips open a bit, but still breathe through my nose. I’ve even got a little better at controlling the saliva drip into my throat. Just get your mind right. Part of the job, you know.
One week, and I feel 98% fine. Just a little sunburn. No nausea. No constipation. No mysterious emotions. Dr. Rosove (chemo) even said that he wished all of his patients were so easy. He also mentioned something about Week #2, and beyond. Uhhhhhh, we’ll see.
I’m starting to feel it.
By the middle of the second week, it started. A little constipation here, some fatigue there, hunger w/ a concurrent cannonball in my stomach, a scaly roof of my mouth, the sunburnt neck, etc. And I weigh 161 lbs. today.
After my plank time, I went over to the radiation clinic side and asked to speak to my Dr. (Steve Lee). He and most of the Dr’s were in Miami for some radiation conference, however his resident was there to see me. Dr. Lee and me are very lucky to have such a thorough, precise, and helpful resident physician; Julie Kang, M.D.
The takeaway? “We’re harming you, but it will pass someday.” In particular, she gave me a prescription for a mix of Lidocaine, Maalox, and Benadryl liquid that I may drink right before eating whenever it becomes painful to swallow. And, of course, I should now commence w/ baking soda gargles in order to help moisturize (a little) my mouth as time goes by.
And, about that constipation and weight loss? Just eat more. Forget all your healthy diet crap. Have a bowl of ice cream w/ chocolate-dipped Oreos that are deep fat-fried. W/ sugar on top.
She spelled it out: C A L O R I E S.
I told her I will not eat junk. But I do believe that there is a large supply of good, quality calories out there. Been to Whole Paycheck lately?
So my hair is still in place. I get tired more; yesterday I laid down on the couch for 5 minutes and woke up about 4 hours later.
I took my iPod in to the dungeon today so that they could play some of my music (no to Elton John!). On 6/26/94 at Sam Boyd Stadium in Las Vegas I had no idea that the Grateful Dead show I was attending would be the accompanying music to the clicks, clacks, and high-pitched BUZZ of a machine shooting radiation into my head. Funny how things work.
I have a fair amount of free time currently, but I don’t know if I will ever have enough to read The Cancer Ward by Solzhenitzen (sp).
In any case, I’m going to my very own 5 days/week right here in sunny Southern California. And herewith are a couple of my sunny observations:
The moods of chemo and radiation reflect the architecture.
Chemo is Business Class five floors up, w/ a view. Many people are open and congenial, willing to chat. “Can I get you some juice? I’m going that way,” as we push along our dripbag stand. There is a feeling of life and hope, and sunshine. We’re being harmed (poison) just as much as by radiation, but I think one still associates a needle/transfusion more w/ healing benefit, as opposed to what we associate w/ a ray shot from a machine. I like to read. Others listen to music (iPod), chat up the kind nurses, quietly talk on their phones, or just try to sleep.
Down in the Sunburn Dungeon there is no conversation. There are no warming rays of sunlight. Some people are even wheeled in. Some people from lower socioeconomic strata w/ large round growths hanging off their neck. Some people almost comatose being pushed in a wheelchair. The only conversation is the Spanglish tossed back and forth by the medical transport workers (definitely not EMT’s) who wheel in some of the customers and then wait in the hallway w/ all the rest of us. I spend about 10 minutes every day working on a jigsaw puzzle in the center of this area. If I get in two pieces, it’s a good day. And it WILL be incomplete; I can see there are numerous missing pieces.
And there is my 10¢ metaphor for the day.
I u/l’ed some pix of me so you can see me age quickly.
As it turns out, I made a new page. It is in that black bar above after ‘Home’ and that ‘about me’ or whatever it is called. Click on ‘Aging’ and you can have fun watching me age over the course of this punishment, er, therapy.
Enough w/ the hair all over the house. Today Brigitte gave the only haircut she feels able to perform; the buzzcut. At first, she tried to scissor along the back to straighten the line. It was soon obvious that ALL the hair was going, not just along the line of the death beam. So at that point I went inside, got my nosehair clipping tool (oh, you’re not 35 yet?), put on the hair cutting attachment, and went back out in the backyard for some REAL cuttin’. THAT is something my wife knows how to do.
So, I now have a new hairstyle. It’s about 1mm long on the top, back, and sides. Brigitte says my skull don’t look bad. Pretty nice, in fact. And she’s not even my mother! Another indicator of her love. I expect those 1mm pieces to go away in the coming week.
Right now my my #1 discomfort is taste; it’s shot to hell by my own saliva. It’s called mucositis, although that may refer only to the sores/blisters on the inside of my cheeks. My saliva feels very viscous, and it has a sort of metallic flavor. That in turn makes all food taste a little bitter or metallic, more so if it starts out a bit tart. So the things that are bad for cancer (spinach, chard, kale, etc.) are very unpleasant, and things that are good for cancer (sugar) are more palatable. Brigitte says, “It IS smart. It wants to be fed.”
That made me think of a section of the cancer history, The Emperor of Maladies: A Biography of Cancer by Siddhartha Mukherjee. Page 388 – “These gene cascades, notably, were perversions of signaling pathways used by the body under normal circumstances. The “motility genes” activated by cancer cells, for instance, are the very genes that normal cells use when they require movement through the body, such as when immunological cells need to move toward sites of infection. Tumor angiogenesis exploits the same pathways that are used when blood vessels are created to heal wounds. Nothing is invented; nothing is extraneous. Cancer’s life is a recapitulation of the body’s life, its existence a pathological mirror of our own. Susan Sontag warned against overburdening an illness with metaphors. But this is not a metaphor. Down to their innate molecular core, cancer cells are hyperactive, survival-endowed, scrappy, fecund, inventive copies of ourselves.”
This sounds like we got trouble. The two therapies that we currently use to ‘cure’ cancer are radiation and chemo. They both attack the cancer (tumor or legs of the crab) by deadly radiation aimed at it, or by killing all of the fast-growing cells in the whole body. Both are deadly; chemo is poison, and radiation CAUSES cancer. I hope that we humans have been ‘hyperactive’ and ‘inventive’ over the last century in fighting cancer, b/c radiation was used over 100 years ago, and chemo from about the 40’s. Refined, no doubt, but I guess if your trying to kill an ‘inventive copy of yourself’, you have to attack yourself. And being so scrappy and inventive, it is a rather fine line we walk; kill the invader, but please don’t kill the host.
Medicine has used radiation therapy as a treatment for cancer for more than 100 years, with its earliest roots traced from the discovery of x-rays in 1895 by Wilhelm Röntgen. Emil Grubbe of Chicago was possibly the first American physician to use x-rays to treat cancer, beginning in 1896. The field of radiation therapy began to grow in the early 1900s largely due to the groundbreaking work of Nobel Prize-winning scientist Marie Curie (1867–1934), who discovered the radioactive elements polonium and radium in 1898. This began a new era in medical treatment and research. Radium was used in various forms until the mid-1900s, when cobalt and caesium units came into use. Medical linear accelerators have been used too as sources of radiation since the late 1940s.
The first use of drugs to treat cancer, however, was in the early 20th century, although it was not originally intended for that purpose. Mustard gas was used as a chemical warfare agent during World War I and was discovered to be a potent suppressor of hematopoiesis (blood production). A similar family of compounds known as nitrogen mustards were studied further during World War II at Yale University. It was reasoned that an agent that damaged the rapidly growing white blood cells might have a similar effect on cancer. Therefore, in December 1942, several patients with advanced lymphomas (cancers of certain white blood cells) were given the drug by vein, rather than by breathing the irritating gas. Their improvement, although temporary, was remarkable. Concurrently, during a military operation in World War II, following a German air raid on the Italian harbour of Bari, several hundred people were accidentally exposed to mustard gas, transported there by the allied forces to prepare for possible retaliation in the event of German use of chemical warfare. The survivors were later found to have very low white blood cell counts. After WWII was over and the reports declassified, the experiences converged and led researchers to look for other substances that might have similar effects against cancer. The first chemotherapy drug to be developed from this line of research was mustine. Since then, many other drugs have been developed to treat cancer, and drug development has exploded into a multibillion-dollar industry, although the principles and limitations of chemotherapy discovered by the early researchers still apply.
OK, enough reading for today.
How about some pix of hairstyling?
We can come to your house, but we don’t clean up, and nosehair trimming is extra. A lot.
I get glowing reviews and words of encouragement from the kind staff at UCLA, but my life is not good. And I hope it (my life) can recover.
And would you ever think it could all stem from ………. taste?
Whatever that white is, it makes everything taste foul; food, water, ice cream, EVERYTHING. Acidic things are worse, but even ice cream has an evil, foul flavor. BTW, I have not shaved in a couple weeks.
Today I bought a dozen of those protein/calorie cans of corn syrup and chemical junk in order to get enough calories. Eating is a chore, and I am not consuming enough. Last night Brigitte basically made me a meal of baby food. Sweet squash (blended), peas (blended), and chicken in a sweet sauce. She now does not get insulted when I wince and have to force it down. I also will take a swig of a compound mixture of Lidocaine, Maalox, and Benadryl before any large meal in order to numb my whole mouth/throat. It lasts about 20:00, so I have to hurry.
I now have a comrade in SNUC. Believe it or not, of the 100 or less who get SNUC each year in America, there are two of us at UCLA right now. Same as me, she noticed a persistent stuffed nose, went to the Dr, etc. I’m about 2 or 3 weeks ahead of her, so all she (I call her SNUCie; she probably calls me SNUChead, I don’t know) has to do is look and listen to find out what is in store.
Last week the chemo Dr. floated the idea of ANOTHER two rounds of poison in order to be sure (or just more confident) that we killed the SNUC. I don’t know. He’s the doctor, and I have never been in an adversarial relation w/ one, but I am reluctant to poison myself twice as much. There are also issues such as lots of chemo and radiation causing cancer in the future. We shall see.
All I want to say is: Don’t volunteer for cancer. Live and eat right, because this shit ain’t worth a cigarette or cheap fast-food.
For your viewing pleasure, have a look at ‘Aging’. I’m approaching concentration-camp style.
I’m feeling it hard now.
The death ray is relentless. They may not kill the host (me), but I fear that they will debilitate and degrade me.
I went today to the Jules Stein Eye Institute on the UCLA campus. My radiation Dr. sent me there, for good reason. My eyes are now creating a crust that gathers in the end by the nose. Some mornings it is a large amount. The eye Dr. said that the radiation is disrupting the tear ducts. Now I will wash w/ OCuSOFT Eyelid Cleanser each night, and then apply Maxitrol opthalmic ointment to the lower eyelid above the lashes. Oh, that may be just for the next few weeks, or the rest of my life. In the morning, if there is a lot of crust, I will wash again.
I am losing one or two pounds/day. In addition to the foul taste, my mouth is now an open sore, to a large degree. There is no joy. Here, from a meal of free, wild salmon, organic potatoes whipped w/ lots of cream and butter, and organic peas, is what is left after my best effort last night. Brigitte warmed up an old statement from my Dad’s dad, Thor Mason, “OK, if that’s all you want, you’ll be seeing this food tomorrow.”
The drug is a compound of Maalox, Lidocaine, and Benadryl that is supposed to deaden my mouth so I may eat. Well, the evil flavor still sneaks through, and it lasts about 5 0r 10 minutes. And no, I am not in a wolfing-down mode these days. Oh, one other thing; the space between my cheek and gums (I think that’s where Skoal goes; right?) is now a storage facility. I have to spend lots of painful time during and after every meal cleaning it out.
Yesterday I asked for, and received, a 4-day weekend. The radiation Dr. warned about too many/too long breaks that would allow the phantom cancer to survive, but then said 4 days off would be OK. I can tell you it was not bluster from me that impressed him. I bet that I am cutting a pretty pathetic figure these days.
I have TEN days of The Death Ray remaining. 10 days.
I see it has been 10 days since the last post. The fatigue is setting in. Many days I say I will post something after dinner/feeding. No.
So, here are some highlights. In no order b/c I’m not being a real clear thinker these days.
The 6-day sunburn vacation was just a preview of what I will experience when I am finally done w/ radiation treatment; at least a week of continuing pain, and even some new and different ailments. So for the first few days of renewed death beam, I was feeling OK. But now (3 days in) the neck is all burnt again, and mouth sores are returning.
The worst pain and disfiguring was about 5 or 7 days after the ‘vacation’ started. Aforementioned sores and pain, AND the bonus of seeing my face about 1/2″ fatter/rounder due to swelling. That entails things like the inside of my mouth swelling inward and even my ears getting thick.
That is just after getting out of bed. The goo on the sides of the mouth is from the very viscous saliva that is also poisoning all flavor for me. That residue on the right end of my mouth is where I the saliva ran out as I was laying on my right side. New pillowcase; matter of fact, new sheets. “Why didn’t you breathe through your nose?” the astute reader says. B/c both nostrils were clogged up by blood boogers caused by the death beam passing through the inside of my nose. Notice my puffed up drunk’s nose; that ain’t from too many cocktails! The mouth guard is an old friend I’ve had for 22 years for bruxism (look it up; it’s not pertinent).
Once I got to 150 lbs. and eating about 300 calories per day, I gave in and went for the gastrointestinal feeding tube. I now consume 6 cans of some protein/calorie shit every day, via a tube that was surgically placed just below my left rib into my stomach. I had Brigitte take a photo, but we both decided (mainly her) that it was a form of pornography and not really…………………….. well, that photo above may qualify as porn too, but I’m just trying to inform you (friends and cancer infoseekers) what one endures fighting SNUC.
Here are some photos w/ comments:
Photo Deleted: judged to be porn by spouse and select readers.
One night’s output of spit/phlegm. I often am jolted awake by a big coughing up of a huge phlegm ball. This is good, as it allows me to breathe clearly again. As you see, sometimes I even get a little bonus of some blood.
I said photos, so here is at least one:
Brigitte just left me, to go earn some money. She has an assignment in San Francisco today and tomorrow, so about one week ago I called my brother Dave. He volunteered without hesitation to come out here (from Dallas) for a week in order to help out and see his little brother. He had already mentioned this possibility to his boss (Verizon Wireless cell site engineering dept.) and so it was not a problem. It’s good to have loving mates and siblings when one has cancer. If you don’t have one, GET ONE!
There are other things about which I could write, but it’s 6:30 PM, and I’m getting tired. Go to Aging in order to see some real aging.
As I have accumulated a bunch of drugs and drugstore items, I thought it would be a good public service to let you fellow Onco-Club members (no, not a blog reader ……. a cancer host) in on what works for me.
First off is skin care. The Radx is best. Hard to find. The Miaderm is good at night, as it is less oily and will not make such a mess on sheets, etc. The Emu oil is merely oil, but it has (supposedly) great reconstruction properties. This I used a bit, but it will be used most once the punishment ends. For now, I do about 3-5 applications of the two creams/day, w/ Miaderm only at bedtime. Actually, all three of these are not in your local bullshit drugstore. Good luck. You’re smart; find ’em.
After the exterior sunburn, the interior is pain #2. I guess there is a whole new category of mouth care of which I was unaware: dry mouth. In my case, it comes w/ that evil thick saliva that makes all food taste terrible. So, I use their mouthwash and gum numerous times/day, and the toothpaste when I brush. The hydrogen peroxide I spray in the mouth when the sores start to hurt, or it just feels sort of unclean. The bubbling action feels sort of cheapthrill-like, and it’s fun to bend over and let a big wad of white bubbles into the sink. (I mentioned how life is diminished currently; didn’t I?) See more about cheap thrill below. The OmniGel is mouth-related, but not in a direct cancer sense; each night I put a bit into the upper and lower dental molds that were made for me. Then I wear the molds 5:00 in order to give the teeth a fluoride bath that will act as a tooth decay preventative. This is b/c my teeth are now in a diminished state (forever), and cavities/tooth decay will pose many ugly scenarios in the future.
The NeilMed is the other fun I have w/ home cancer care. Although, I must say, the novelty has worn off a bit, and I don’t really laugh anymore when I shoot water up one nostril and it pours out the other. Also, there is less visual stimulation these days, as the agitated, burnt inside of my nostrils seem to scab up harder and thicker. Previously, I could always marvel at the chunks of blood/scab/snot/etc that would come shooting out into the sink. For example, the other night I kept Brigitte awake most of the night as I coughed, hacked, spit (into that pornographic cup, you know), and made a couple visits to the bathroom in order to open up any sort of airway. The scabs were blocking the nostrils about 100%.
The Alkalol is/was sort of a novelty, as it smells of Vick’s VapoRub, and has a little sting, but I’m not sure if it did any good. I have always made a mixture of 3/8 tbsp. salt and 3/8 tbsp. baking soda into 1.5 litre of water, so that was just a bonus. But I did feel good about using a product from 1896. After all, I’m using 19th Century technology (yes, refined a bit) when I put myself before the Death Beam on a daily basis.
This was rec’d way back after my 1st operation by Dr. Finerman. It ain’t no miracle, and I’m not even sure what good it really does, but I like the VapoRub smell, and it may soften up the huge blood boogers I get.
Vicodin? That’s for kids. When the mouth sores get realllly bad, and the neck is one big sunburn scab, I reach for trusty ol’ MORPHINE. It’s not even in pill form. It’s a jar of liquid; freepour, baby! But I choose to use the marked plunger to take just the prescribed dose. I have come to realize that pain killers just do their job and deaden pain. There is no ‘high’ of any kind b/c it’s busy working. So if one wants to get high w/ a pain killer, one must be pain-free and choose to misuse that drug. I choose not.
There you have my regimen, so far. I’m open for comments or brilliant suggestions.
Today the punishment ended.
The laser aligns w/ my head. The opening you see changes constantly as the entire head rotates around me. It may save me, but this True Beam is not my buddy. Its love is just a little TOO tough. I will not miss it.
So now the rebuild commences. Or soon; the radiation is in me and will not dissipate overnight. I’m 150 lbs. today, and tired.
It has been almost two weeks since the end of radiation, and a month since chemo. Of course, it was the radiation that did the damage. Each day is a bit better, but not ENOUGH better. My Internet connection is fast; why can’t this damn body of mine slough off this damn poison and radiation fast too? Below the neck, I feel fine (for the most part). When is this damn saliva going to be normal? When are my nostrils going to deflate? When are these mouth sores stop pretending to be better, and just go away?
Some things are cooperating; swallowing is almost pain-free, phlegm is somewhat diminished, the skin on head/neck is back to normal (or better) due to the various oils/lotions I’ve been using.
But now I have a new condition that really thrills me; blepharitis. The Death Beam affected my tear ducts so that now the eyes don’t drain into the nose, but just overflow. I now put socks w/ rice in the microwave for :45 and then put them on my eyes in order to loosen up the junk in my ducts so that the eyes may drain properly. I wish I had brought the camera to UCLA the other day when I went to the opthamology dept. The Dr. put a plastic pipe (1mm or less) down my lower tear ducts (the drains, which are by the nose) and squirted. I then felt fluid go down my sinus/throat. I’m sure that would have been a real nice photo! Until this improves, I will be teary-eyed most all the time. I have to wipe occasionally just to be able to see. Or am I just turning Emo?
I am determined to get this G-Tube out before we go to Germany on 12/21/11. So I have been eating a bit since Thursday. Small starts. But tonight I will have a few bites of New York steak and some Broccoli. If we have any red wine in the house, now is the time to have the only alcoholic drink that I will ever drink again.
Yes, there will be some changes roun’ here. No sugar, no alcohol, no refined food, no white (more refined) foods, very little meat (chicken breast w/o skin, fish), no bad (animal) fats, etc. Just gettin’ my mind right, boss! Brigitte is a willing partner, but I have no problem whenever she wants something like a steak. These bites tonight may be my last. Whatever.
I am now in the process of growing younger. My Dad called tonight and said that I sounded my normal self for the first time in weeks. I’m guessing that my nose may be deflating a bit so I am not so nasal. Now if I could just stop looking into my Kleenex each time I blow my nose! At least I don’t do that in public, like ONE old man I know (are you reading this, Dad?). Once I can pull off that feat, I’ll drop about 15 years of age.
Hey, I weighed in at 152 the other day! With every day, there is another small step forward.
OK, enough crap from me today. No new pix, so I’ll leave you w/ this, my latest achievement.
This is the view of me every morning. Hey look; I have back both my jaw and my cheekbone! No, I’m not washing my face, just rinsing it. Even before I got punished by the Death Beam, I didn’t wash away the oils in my 51-year old face (that’s at night), and I sure don’t do it now. The strip on the nose is a desperate attempt to keep my airway open. It seems that the more vertical my head goes, the better I breathe. But sleeping w/ a bent spine does not appeal to me. It’s a situation in flux.
Went to Dr. Finerman; the nasal swelling is an infection. The Death Beam dried out the inner nose, it cracked, the snot picked up some crap blowing by, that was passed into my system through the cracks. This is similar to the airplane scenario due to the dry air on planes, only mine was supercharged. I will know soon if I have to take antibiotics, something I do NOT want to do.
And now, on to the subject for today. And the rest of my life.
I won’t be taking all of these supplements forever, but perhaps 4 or 5.
“Life Over Cancer” – Keith Block It could be 1/3 as thick, but it does have good diet info.
These are almost all of the ingredients in the ‘smoothie’ that my naturopath (interesting; WordPress does not see this as a proper word) has told me to drink every morning. I know my saliva is still damaged, but I don’t think Jamba Juice will be putting this on their menu anytime soon. I make sure it’s got enough almond milk and coconut water to be thin enough to chug (and not taste until the end).
You should be able to read the labels. The granules are lecithin and the pretty bottle is turmeric. Sunlight, a Mason jar, orange powder, and a 100mm macro lens just made me take that last shot.
At certain points, I will discontinue some of these, which is fine; this shit is not cheap. I’m in a ‘detox’ stage now, as I transit from my previous diet, that was fairly healthy, to a cancer diet. Apparently, I’m eliminating many harmful ‘toxins’ from my body w/ many of these ‘neutraceuticals’. Then later, I will be taking only a few supplements. I guess.
Diet; have I mentioned this previously? No sugar. Very little fat (red meat, bad oils). No refined carbohydrates (remember; they turn to sugar). Etc. There are many cancer-fighting foods w/ which I am becoming familiar. Someday when I get a better handle on how to eat and fight cancer, I’ll do a page on that. Someday.
I engaged in a little subterfuge and got that damn gastrointestinal feeding tube removed a week or so earlier than planned (if a therapist won’t approve it sooner, find one of the many doctors you have who will!). It was in only about 5 weeks. Now I feel I am in charge of my path to recovery, and can start doing some real exercise w/o that damn tube bouncing around irritating my, uh, hole.
Speaking of that hole, it was about 2mm in diameter, stretching around the 6 or 7mm tube. And the wall of my stomach apparently is somewhat like a muscle, in that it was not really a hole, but rather a separation of the fibers. I guess it just closed up once that tube was pulled out. Or should I say yanked out. I laid back on my back, the nurse started to mess around down there, and I hear some wet sound. There she is holding the tube in her hand. I said, “Hey, is that it?! Lemme see that!”
She had to fetch it out of the waste basket in order to show it to me. About 2 1/2″ had been sticking inside me. Interesting, yet somewhat disgusting. Sorry, I didn’t take my camera that day. Maybe some good hole photography is in store. Ex-hole, actually.
So, I am now on a weightlifter regimen, w/o the excess. I have been told that I need lots of protein and calories to regain weight. In addition to my daily one hour of fast walking, I will commence w/ some weights soon, lightly. Each day I plan on some sort of flesh; bison, ostrich, lamb, chicken, fish. Lots of vegs that cancer hates. Good oils. Good carbs. I will toe the line between cancer diet and weight-gain diet. I’m sure there is one somewhere, and the two are not opposed; I just won’t gain super-fast or look like Chuck Atlas. Never did, and surely never will.
Now it’s all about me gaining weight, muscle, and stamina in order to ride coach to Berlin for 10 hours, brave some damn cold weather, and look non-scary for the in-laws (Hello Mutti! Your Xmas cookies LOOK great). The parents of Brigitte have not been told about my condition, as neither of us felt that constant worry and constant contact on their part would have a calming/soothing effect on me, the weakened one. They will find out a couple days before we touch down at Tegel Airport.
Brigitte tells me I should write about my white/gray hair that is now about 3/4″ long, but I don’t have any pix yet, and we want to go take a walk. That will be #2 for me for the day; I’ve got a regimen, you know!
So, things are looking up. More to come.
I’m tired. A little chilly too. Sometimes when I bend over or sit up too quickly, I get real dizzy. This Onco-Slim diet is good, I’ll tell ya that. Here it is 2 months after radiation and about 3 months after chemo, and I’m STILL sporting that enviable concentration camp physique. And I AM eating to gain weight ……… within cancer patient reason.
We went to Germany and Switzerland for XMas. Two weeks of cold, gray, and rain probably did not help in the healing cause, and I am glad to be back in Sunny Southern California. While there, we ate at numerous exquisite restaurants (thank you Vatti and Mutti) and I’m sure I had too much butter and dairy, but the weight was just not forthcoming. I’m starting to think that just as I am still glowing (and thus must wait until Feb. or so for follow-up scans to detect any lingering tumors), the radiation that is still in me does what it wants. Fucked up saliva and dry mouth? Radiation says, “Yeah, that’s what I want. That dry mouth toothpaste you’re wasting money with is pretty cute.”
Can’t put on weight? “I like you thin, beeeotch. I want people to know that you’re MY bitch. No body fat and that special hair style says you all mine.” So I slowly, incrementally fight the crab (Cancro – Greek for crab and cancer, sort of) w/ walking, weights, anti-cancer/weight gain diet, yoga, etc. And sleep. Sleep, nap, sitting in the sun (protected, of course). I think I’m about 70 now. That’s younger than the 95 I felt during the radiation treatment, so things are looking up. We’ll see if I make it back to the age of someone born in Dec. 1959. Maybe, but there will remain a certain aged awareness (weariness?), I’m guessing.
OK, enough text for now. I have to go on my walk. And I still have to u/l some Onco-Slim diet pix for you viewing pleasure.
Notice the ghetto pants style. My 34/36 pants are a BIT loose these days. That belt has not more holes in it; my waist must be about 30 currently.
Just messing around w/ the camera and trying to find a decent place to shoot some portraits at home. In the dining table area two feet in front of the wall that has light on it. The key light is a 2″ oval orb above the table, about 18″ away from the talent (us). I have a 2′ x 2′ bounce card w/ silver Roscoflex S on one side that we each held at stomach level to put a little fill in the shadows. It’s nice when the talent takes part in his/her own illumination.
I’ll do a better version of Brigitte (hair, makeup, wardrobe) b/c she keeps getting requests for a portrait for the ‘our writers’ section of many magazines.
Oh, I now weigh 144 lbs. Have I mentioned that yet? Eggs in the morning, flesh at night (leg of lamb tonight), potatoes, protein smoothies (w/ lots of expensive supplements), nuts, breads, etc ………….. and I STILL do not add weight.
Here’s a word you may have seen me use before: cachexia. (the ‘ch’ is a hard k sound)
I thought it was just weight loss. Not so quick there Scooter; there’s more:
Cachexia ( /kəˈkɛksiə/; from Greek κακός kakos “bad” and ἕξις hexis “condition”) or wasting syndrome is loss of weight, muscle atrophy, fatigue, weakness, and significant loss of appetite in someone who is not actively trying to lose weight. The formal definition of cachexia is the loss of body mass that cannot be reversed nutritionally: Even if the affected patient eats more calories, lean body mass will be lost, indicating there is a fundamental pathology in place.
Sooooo, where was I? Today I started writing down all the food I eat and its estimated caloric content. The goal is 3000/day. And the cancer diet rules to which I have been adhering are being ‘eased’ just a little bit. You try to eat 3000 calories/day while eating smart. No; fast food is not smart. Not even bacon and candy bars. Imagine that?! It’s more flesh while avoiding as much processed food as possible. What sucks is the realization that even a good pork sausage is processed food. Ditto breads, sweets (bad anyway), pastries (bad anyway), most canned goods, you can figure it out. So I have more meat, beans, quinoa, avocados, etc. Last night dinner was 1/2 lb. of Spencer steak (my portion, not for both of us), and potatoes/zucchini gratin. Animal fat, and …… animal fat.
This brings to mind something I said to my Mom in ’95 when she was here in L.A. to mother me back to health after a big motorcycle racing crash of mine at Willow Springs Raceway. It was Turn 8, the fastest part of the track. Doing about 145 mph when I hit oil deposited on track by another bike up ahead. 7 bikes had just gone down in it, and the flagman had yet to get out to red-flag the session. Closed-head trauma (aka brain damage; you had no idea …………… right?) and 3 1/2 weeks in the hospital. After the splenectomy and a few days in ICU, I was basically in a wait/improve/heal mode. At one point, in my grogginess, I looked at Mom and said, “I know what’s wrong with me, there’s just nothing I can do about it.” I was told later that this had a very disturbing effect on Mom and saddened her a lot. Being a Salt-of-the-Earth Kansas girl, she never revealed any of this to me. I know what is wrong w/ me. There’s just nothing I can do about it.
Except feed myself and wait.
I think Mom would say something like that to me now.
And now for some exciting news: Hair. It seems like in just a day I have sprouted some eyebrows. Partial eyebrows. And how about that hair on the side of my head! So I guess my old frenemy Radiation is starting to dissipate. And check out that ONE long strand of eyebrow above my right eye. It never gave up. That hair strand is a survivor, baby!
No, not “of your kisses”. This post ain’t about gettin’ lucky w/ your best gal, as is the Lefty Frizzell song (Give Me More More More (of Your Kisses). This post is about, ………….again, weight, food, calories, protein.
I went to the Motion Picture Home out in Woodland Hills to see Lesli Leder and Brittany Sansone, nutritionist. Brittany is the first nutritionist I have seen (this 50-mile visit was sort of a favor to Lesli) who had some knowledge to impart to me. And the crux of that knowledge? “Yup, 3000 calories/day sounds about right, and you might try this: whole milk, iron, D-3, and even let up sometimes on that sugar boycott.”
She appreciated (from reading this blog!) my homespun knowledge (as it is) of cancer and nutrition, and basically confirmed my outlooks, but reiterated (after about four Onco doctors at UCLA) that before I worry about feeding cancer I need to worry about feeding my body.
Straight home to make a turkey/cheese/olive panino w/ HOMEMADE mayonaise. It don’t get much more of a calorie/protein bomb than a fucking egg yolk and olive oil! And then I sprayed olive oil on the sandwich and pressed it in our panino pan. Oh, and more Rice Dream w/ ground almonds and blueberry jam.
Is this blog becoming just another food porn site?
Grinder is circa 1900 from the parents of my Mom. Grinds my almonds. In the past, it has ground many potatoes for Komla ( 4″ Norwegian potato dumplings w/ a chunk of ham inside).
I like the Rice Dream a little more. I’m seeking a whole milk ice cream w/ no refined sugar, nor synthetic sweetnener. Maybe w/ Stevia, or agave syrup, or some other syrup that is not TOO bad for me. Let me know.
Brittany said a good rate of weight gain is about 3-5 lbs./month. OK, well then I guess I’ll be returning to work a while before I hit 160 lbs! Maybe somewhere around 150. I’ll just have to see how strong I feel. That, and the fatigue. We shall see. Exercise, eat, repeat.
Which means I gotta get up from this desk. Seeya.
Hey, maybe hard times are having a beneficial effect.
This bottle is one on which you make a deposit, and then take it back for recycling. I vaguely recall that from my childhood in Cedar Rapids. And I definitely recall those 10 oz. Pepsi bottles! The ones that came in wooden crates.
“Hey Chuck, that’s WHOLE milk!”
“Yup, it went so fast, I got this half gallon at TJ’s. But I didn’t read the SMALL print until I got home.”
Oh. I see. Guess I’ll be buying my milk one quart at a time now. It’s more money, but I DO like the packaging.
I gotta say, after the initial shock, that whole milk tastes pretty damn good. I think it’s another example of the body liking and disliking what it wants. Currently, I dislike any form of alcohol and crave things like milk that is just FULL of fat.
Maybe someday I will actually reach 3000 calories. I had a good start today w/ 6 whole wheat crepes stuffed w/ creme cheese and (no sugar added) fruit spread. That’s jam to you and me. Of course, Brigitte tells me I’m just lying to myself b/c that ‘grape juice concentrate’ is just sugar. She’s right, but it’s not that refined sugarcane sugar. And I need to put on some weight NOW. BTW, I added about 2 Tbsp of agave syrup to the whole wheat crepe mix b/c w.w. is just a bit …………. rough or coarse. Not ……….. what word am I looking for ……… uh, ………. refined.
I’m going back to simpler times. Unrefined flour and milk in a thick bottle that I recycle. No refined food. Whole foods. No processed food. I think I’ll start speaking like 1865 soon.
I got a heartening letter yesterday from a fellow SNUC’er. His wife, actually.
———————————————————————– My name is Lisa Burns. I’ve been following your blog for several months. My husband of 30 years was also diagnosed with SNUC ( Nov 2010.) His name is Bob and he is about your age (born in 1959) As you know only too well life gets real crazy real fast when hit with something like this. A few quick highlights about Bob’s SNUC world – Were on our 4th oncologist. Finally found our man after several 2nd opinions and then some – for us MD Anderson was not “the best” – in fact, I believe if Bob had continued treatment there he would not have survived. We ultimately have relied on a precarious mix of conventional medicine and alternative treatments. Also we implemented a lot of changes in diet. Pretty sure I would qualify as a professional juicer at this point. Bob used Homeopathic remedies throughout treatment. He had endoscopic neurosurgery using NICO Myriad and stealth technology in May 2011, 8 weeks of chemotherapy (1 round of Cisplatinum and Etopiside at MDA and then 6 rounds of Carboplatinum with Taxol at Baylor) both before and after surgery. The surgery was rough but Bob recovered remarkably well. After recovering from surgery he began the 30 radiation treatments (IMRT – 5 days a week). Last IMRT treatment was the day before Thanksgiving 2011 and it kicked his ass in every direction possible. The good news—Post surgery MRI on 1/16/2012 showed no sign of any re-growth. Also scoped the sinus cavities and found nothing. Next step will be a day surgery to clean out the sinus cavities on 2/28 and get a little sample to biopsy just for good measure. Hopefully that will help with the ongoing congestion and shut down the ongoing mucus factory in his head.
Right after Christmas Bob starting back on his treadmill. He’s up to about 3 miles X 5 days a week. The exercise is good but hinders (in my humble opinion) any efforts to gain weight back. He lost 50 lbs during radiation – his low was 146 but he’s back up to 152 now. No feeding tube – Dr’s were not too happy about that but he managed to survive after breaking down and drinking the Ensures. Bob also still is experiencing the dry skin/dry mouth/dry everything. He’s had several bouts with thrush.
Docs will run another MRI March 16th.Until then we are just happy to be here. I wanted to just share our story with you and encourage you with a survivor story. I know the internet doesn’t offer up too many of those regarding SNUC. Also we’d like to thank you for sharing your story so honestly. Your blog and your attitude truly helped Bob as he was going through treatment. We wish you all things good as you continue to fight the good fight and continue to recover. I’d love to know more about your treatment plan and your DR’s. Also I would be happy to pass along any info from Bob’s experience that you might be interested in.
One last note-My daughter Megan found your blog and is a faithful follower as well. She said to tell you Hi.
Best wishes to you, Brigitte and Velma.
First of all, I’m glad to know that there are chicks out there who dig a fella w/ puffy cheeks, hollow chest, and no eyebrows. Thanks, Megan.
Mrs. Lisa Burns has obviously jumped into the world of practical oncology w/ both feet, and knows more about some aspects than me. Really, you could say the same about my wife, Brigitte. She used her journalist skills and her Mac soon after my diagnosis and learned a lot about SNUC. She then told me not to bother my pretty little head w/ all of that and sent me one link to some fellow who wrote a lot about cancer nutrition; http://www.cancertutor.com/AltTreatments/Alt_Diet.html This is done by some true believer, so much is a bit pedantic or sententious. But lots of info, and rules. Read the info, but remember the rules. You know: 1) No sugar, or things that lead to sugar – alcohol, simple carbs 2) Very little fat (don’t ask me which one) except certain fish oils and olive oil 3) no processed food, which precludes most restaurants and all fast food 4) a long list of vegetables that fight cancer and that shorter list of food that feeds cancer.
So I don’t know a whole lot about SNUC, nor specific treatments. I guess this blog is pretty much a ‘User’s Guide’ to cancer. In that vein, I hereby include two documents:
OK, that’s enough for now. I gotta go make some juice. I think some more food porn is in order. I want any fellow SNUC’er (maybe other flavors too, if you’re nice about it and don’t tell me how fucking ‘aggressive’ is YOUR cancer) to send a list of high-calorie/protein food you eat to fight cachexia. Hopefully, it does not feed the cancer too! I will start a list of my own and share it soon.
Now for a little hair. The first has me modeling the nasal strip to help keep open my nostrils in bed. Helps a little. And notice the beard is even coming in a bit more. Ditto the damn nose hairs. Gotta get that OncoTrim!
Finally, on 2/23/12 I will get my follow-up scans; a PET scan, a brain MRI, and a full-body scan. Brigitte has been expressing concern lately that UCLA/Blue Cross have been negligent, as apparently SNUC is an ‘aggressive’ cancer that needs to be diligently monitored. So after about 10 emails, 20 phone calls, 18 voice mails, and two visits to the office, I have wrangled this big scan-fest at Tower St. Johns in Santa Monica.
So, no meals after 12:AM on 2/23, NO exercise during all of 2/22, a low-carb diet for all of 2/22, and oh, one more thing. Don’t be around, or in the same room w/ infants or puppies. “B/c after all, we are going to make you glow like Fukushima, Mr. Mason. Maybe by 2/24 you can be in the vicinity of your dog, just not for too long.”
Is this just another form of job security for the growing industry of oncology? These days all I hear on NPR are sponsorship ads for hospital cancer treatment centers, and most buses seem to be rolling billboards for the same. 250 years of Industrial Revolution has had some effects, and I think cancer is one that we are feeling now, w/ more prevalence in the future. Pollution of the air, land, water; radio waves and electromagnetic effects; stress; industrial farming and the poisoning of our bodies; much less physical activity, runaway overpopulation — progress marches on. And cancer seems to adapt to many of our attempts to control it.
I have no concerns about the scan results. I’m feeling better everyday. There’s even a little spit in my mouth now! And what has made me feel even better is getting booked for work in early March. I will be gaffing some spots for Mattel in El Segundo. Perfect job too; small sets, nice people, and Barbi hits her mark EVERY time.
Here are some milestones:
1) I had to unbutton a pair of pants in order to get into them. They were skinny jean style, but nevertheless, a milestone.
2) I did not have to get up to pee in the middle of the night. Probably didn’t drink enough water last night, but nevertheless, a milestone.
3) I weigh about 147. Better than 143. Did you know that you can get milk that is not homogenized? The cream floats to the top, and you have to shake it up before you pour it! This morning for breakfast I had a glass w/ two slices of pizza from last night (Oscars + wife, you know). And oatmeal. Oatmeal reduces cholesterol. Good thing I had those two cholesterol bombs to counteract that unsettling effect.
4) I added 10 lbs. to my barbell. I suppose now is the time to attempt adding muscle in lieu of fat. B/c currently there is NO fat on me. Hey, maybe Dad had a point when he referred to his bulging gut as ‘relaxed muscle’. B/c I am growing mine back, albeit not of the bulging variety. It’s, uh, muscle for men over 50.
I went to my chemo and radiation docs today. There I was given confirmation of what I knew to be the case: the PET scan and MRI I got last week show the tumor gone and no traces of any metastasis.
The average of two scales (why is it so hard to have accurate and precise scales?) put my weight around 145 or 146. Not bad. I was told 3 lbs/month is a good average for weight gain, so it will take almost one year to get back to my usual 175. Now I’m not quite so impatient to add weight. This will prevent me from doing much stupid in the kitchen, and stick to my goal of adding weight WHILE eating some sort of anti-cancer diet.
I think dry beans are going to be a large part of my diet. Got any suggestions? No fart jokes either, clown!
No new Oncopix, so here are some pix of Suzy Wong over the last three weeks.
As I slowly recover and function more in the world, I’m encountering some changes. Ever walk into a bar and not order a thing? ANYthing w/ alcohol? Nah. Sugar? No. Snacks? Probably processed corn and other chemicals. As it turned out, I was not there to revel, I was there to scout a band that perhaps I could talk into performing at an American Cancer Society fundraiser/awareness event. Through a political process (me trying to ingratiate myself into the machine of an L.A. city councilman), I have found myself being a volunteer for this event called Relay For Life. I chose the job of Entertainment Chair. So far, I don’t need to study my Robert’s Rules of Order b/c the committee is only me. I don’t even have a co-chair yet. Wanna volunteer? It will be like this – http://www.relayforlife.org/learn/whatisrelay/index
So I am going to various open mics and bar performances in the hope of finding people w/ some sort of musical talent playing a music the I like (I AM the chair, after all!). String bands, jazz, folk, bluegrass, show tunes, any good music that is not bad music. What is bad music, you ask? It comes in many forms, but fortunately I can spot it easily since I have such exquisite, discriminating taste. Then the problem is finding smart people playing smart music that will do it for FREE. Whenever I say that it’s for a good cause I feel like another scumbag Hollywood producer trying to find crew to work on his super-low budget show; “It’s a really great script and we’ve got a few talented people attached to it already!”
Anyway, I did 5 days of work last week and this. I had no problems. Fortunately, it was an easy job w/ an outfit I know well, and there were no unpleasant surprises. One thing I may need to work on is sitting in a chair right on set near the camera, and then falling completely asleep, head bobbing down and all. No drool, fortunately. But I sort of feel, and was informed in a subtle manner, that perhaps it’s not a real polite or respectful mode of conduct to sleep while directors direct and talent emotes. Good thing I’m still sporting a grown-out radiation bald head hair style. But in a month or so I’ll have lost that look and will be just another fella w/ a short haircut. Then I guess I’ll have no more signal that I’m just a poor cancer survivor and everyone should treat me w/ highest deference and kindness. Oh well. I think I’ll be OK.
Hey, I am up to 148.2 lbs! And still no sugar. Fat, yes. Eggs, hell yeah. Flesh, daily. Actually, yesterday we had farro (I’m discovering lots of new foods) w/ vegetables and no meat/fish, I think. It happens occasionally. I’m not in a super rush anymore; 3-5 lbs/month will probably be my weight gain, and that’s it. But today we did have pho for lunch, and no, not chicken pho. Beef, baby! And lots of it!
Oh, I found a cool shop in my part of town; sort of rockabilly/swing styles of clothes and hats too. http://www.mybabyjo.com/Hats_c16.htm
The owner is a good guy; we talked about hats for 1/2 hour, and I learned quite a bit. I’m thinking about a felt LBJ hat someday……………. after all, my head has received 100% of my lifetime share of radiation. Hats will be a part of my future too.
I’ll be that skinny sport in the hat who never has a drink and eats some unusual stuff. OK w/ me.
Excuse me while I go drink some milk w/ cream on the top.
Even though it was gray outside, I figured we should shoot my disappearing radiation hairdo and the bitch’s hairy belly before it gets sliced on Sunday.
Wrinkles and red skin. Time, face cream, and lots of water (drunk) should reduce that. Eventually.
And here is my new straw hat w/ a big 5″ brim. It has the ‘Open Road’ (aka LBJ) hat dimples in it, but the hat man told me it is just a cowboy hat. More leather vests and Wrangler shirts for Chuckie? Brigitte would find that so charming!
We are taking Suzy down to San Pedro on Sunday at 6:30 AM. Traffic shouldn’t be a problem. We have taken two dogs we fostered to the same pet clinic. A very smooth operation for spay/neuter operations. Those two dogs had no complaints and were ……………….. oh, they were both males. Well, let’s hope that this bigger operation on Suzy won’t be TOO traumatic. If you’ve been reading for long, you know that I have LOTS of kick-ass drugs for any discomfort she may experience. Just what is the volume of liquid Morphine for a 5-month old 20 lb. dog? I’m sure it will be fine.
So here is Suzy’s belly, pre-scar. Hopefully, she won’t be too self-conscious about it later on when she is a teenager. That’s about 6 months away.
It’s been a while, dear reader.
I went to Dallas in order to see my Dad and brother for XMas. And XMas is a lot nicer in April than December. Like I said in Berlin last December, “Let’s have XMas next year in June.” Damn, it was cold. But Dallas in April is actually pleasant. Well, it was nice for me. I guess about 10 minutes after the plane took off from DFW all hell broke loose in Big D. Something about warming gulf waters putting more moisture into the air above Texas meeting storms coming west………………. I wonder how long they can keep denying that 200 years of Industrial Revolution may have had some effect on the atmosphere. Drought, tornadoes in April, brown skies over flat plains, etc. But it may be getting through to some, I must have seen at least TEN Priuses on this 6-day trip! Twice as many as I saw last year.
It is interesting how people decide enough is enough. Here I am in the middle of life changes, some rather big, in order to save myself. And there sits my Dad in his electric stand-up LazyBoy, seemingly of the mind that his time is about up. He shares that attitude w/ Brigitte’s father in Freiburg, even though Werner is 11 years younger. But they both share declining control over certain muscles and functions that could possibly have been addressed 20 years ago before things became chronic. But hey, my Dad is 91, smoked for about 30 years, and has never really done any exercise; he has not been cheated in life. When my brother and I told him that he could perhaps improve his general health and functionality through some diet changes, his response was, “I’m not interested in any of that.” And I understand.
But I currently AM interested. Interested in being a pig. But a healthy, anti-cancer pig.
No, it’s not swine. This is Easter Sunday, after all. Brigitte’s stomach is a good Catholic, even if the stomach’s host decided long ago to leave the church in Germany in order to not be taxed from her paycheck (she was baptized in the Catholic church).
I’m stuck at 147 lbs, so don’t give me any grief just yet. And we ARE having a lot of organic vegetables w/ it. But take a look and see if I am on the verge of obesity. I look more like Iggy Pop right now. I lift weights and feel stronger, but I can’t lose that heroin addict look.
Back to Texas —- I have been looking at hats lately. I went to a Resistol/Stetson outlet store in Garland, TX. There I agonized over spending lots of money ($150; I’ve been out of work 6 months) on an LBJ hat, and passed for some reason I forget. Later that evening while at Dad’s apartment in his old folks’ home I noticed a hat up in his closet. It was an LBJ hat that he bought in the early 70’s soon after we moved to Dallas. I don’t recall ever seeing it. It was a size 7 1/4, my current size w/ this hairdo. It is no longer to be referenced in the past tense. It is now mine. Thanks, Dad.
It is not an ideal sun hat (3″ brim), but I always thought LBJ looked good in it, and so do I. Notice the Fort Worth Crease in front. There’s one in back too. Haven’t decided if I want to keep that or not. I’m a simple man, after all. That, and perhaps lower the brim some in order to get more sun coverage. Tell me what you think.
OK, I’m not quite as chiseled at Mr. Pop, but his is the physique that I feel I am currently emulating. Maybe it was the heroin that gave him those stretch marks on his belly. And those popping veins? Is he always angry? Basically, I am now bones and a few muscles. I wonder if he gets cold whenever the temp goes below 60? Judging from this photo, I’d say he’s good until about 53 degrees.
Once again, I encourage you to click on that Onco-Slim link at the top of this page. Maybe I can figure out a way to team up w/ UCLA Radiology and make some real money! I AM in West L.A., after all.
Now I’m really back. I just did two days this week on an IATSE television show. Big crew, lots of trucks, well-known talent w/ her own glamour crew, etc. The Client List.
It was a couple of days at a country club way out in Thousand Oaks. Money. Surrounded by big-box houses in the hills. Walking through the various clubhouses and restaurants of the club, I felt like I was in 19th Century England. The bookcases even held old tattered editions of old tedious books to appear like what the average TV viewer thinks is a library/sitting room for the landed gentry. Only it was not set dressing; it was how they chose to decorate. Money. How exurbia likes to show it in SoCal.
Anyway, I did just fine for those two days, as they were two days of Day EXT; not really a lighting tour-de-force. My big worry was making sure I didn’t fall asleep while reading my Kindle in the sunshine (Steve Jobs bio). Almost once, but I caught myself before it was too late. BTW, I fell in w/ most of the whole damn crew by staring down at my hands while in between set-ups. Almost everybody on a film set now wastes, I mean passes, time by watching stupid videos or playing games on their iPhone. My Kindle fits in my hand, and back pocket, so I’m cool. Heaven forbid that I would read the newspaper or a magazine while on set; that indicates a crewman who is not paying attention, or doesn’t care about doing his job. iPhone: it’s cool.
When I took a small container of quinoa and kale to lunch, that brought some questions or comments from my brothers w/ whom I was eating. That, in turn, lead to a discussion about diet and cancer. Genuine concerns and questions about cancer ensued. Then came the listing of personal ailments and trials of others. Man, disease and cancer are all around us! And at that same table sat the reason why: intransigence and laziness. Just like my old Dad, there was a fellow worker who just didn’t want to bother. Only this man was maybe 51, instead of 91. Among his ailments was emphysema; he smokes. He is obese; he had two desserts. And those were just two big mistakes that I observed. I know there are others. I think part of this problem goes back to that old man I saw in the waiting room for radiation treatment (see beginning of this page). He had obviously lead a life of poor choices, and was then in the middle of hoping that some high-priced doctor and high-priced technology was going to save him. Save? Maybe even make better! Just like Lee Majors in the 1970’s – The 6 Million Dollar Medicare Man. Hell, Uncle Sam will even pay for it! Now THAT is some medical insurance reform that I think is direly needed. (I’m not too happy w/ my choice of adverb in that last sentence)
As this is supposed to be a blog that recounts the experience of a cancerman, here are a few new twists:
-when I blow my nose too hard, pressure is deflected somewhere in my sinuses. My left eye is pushed out some and tears flow from my eye.
-my legs sometimes tingle, as when waking up after going asleep. It’s called paresthesia. Maybe just in the thigh, maybe the full length, maybe 5 seconds or maybe 60 seconds.
OK, I have to go do some yardwork now. Damn bamboo trees. We spent money to put them in, and now we’re thinking about removing them. Do you know where I can get some Napalm?
I got a mail (I think you can see it as a comment on the previous entry) from a reader in L.A. His brother was diagnosed w/ SNUC in January. Soon after they found this blog. It apparently fulfilled a purpose upon which I had been hoping; sharing information and experience on living w/ cancer. I’m not sure if I offer any specific info on SNUC, but rather the trials of one who is living w/ a condition that is trying to kill him.
In this case, I’m afraid the brother may have discovered his cancer too late, as it metastasized rather quickly after the tumor was blasted w/ poison and radiation. The original tumor was regressing, but soon thereafter many others appeared along the length of his spine. He died on 4/13/12.
‘Sorry’ is a word that is losing its meaning (“Oh my god, I am SO SORRY, you guys”), and I will not use it here. I was heartened to talk to the brother of a cancer victim (as opposed to a volunteer who smokes and eats at McDonalds) who told me this blog offered some info, some insights, but really just some sharing of a difficult experience.
And the death of Bert’s brother, David, has only redoubled my aim to lead a good anti-cancer lifestyle. I do what I can, and that is my diet and how I maintain my body. No sugar, no simple carbs, no alcohol, lots of good vegetables, and much less flesh.
I’m even volunteering for an American Cancer Society benefit in Venice on 6/9/12; The Relay For Life. http://www.relayforlife.org/learn/whatisrelay/index I’m the ‘Entertainment Chair’. All the music performed will be top-notch. Why? Because I chose the bands! If you want to come by and see lots of people walking around a track at a high school, I’ll be the guy on the field wearing a big hat.
We never met, but we are brothers in a sense. Members of the SNUC cancer elite; here’s to you, David.
When I was born my Dad took one look (1959 was the days of smoking and drinking in the waiting room, not telling your wife to breathe) at me through the glass into the new baby room (or whatever it was called) and loudly proclaimed (so the story goes), “There’s been some sort of mix-up. That Dago kid is not ours.” I had long black hair.
Well, Dad, there’s been some sort of mix-up again!
Check out the curls! Or is that called ‘wavy’? I’m diggin’ the wave in front that takes off from my cowlick. Brigitte says it will change again in a year or so. In any case, I have told her to pick a length she likes and I will keep that going. As far as the gray, I certainly had gray hairs before the Death Beam took its toll, but not that much. Hmmmmmm, do you suppose I’ve aged just a bit? It will be interesting to see how the wrinkles smooth out, or not. I feel like someone about 60 now (guessing). We’ll see how the appearance follows along as I head back down to someone who is 52. Exercise and diet. Oh, and drinking lots of water. Filtered, of course. The water equivalent of organic vegetables.
Since I already have fitted trays for my nightly fluoride bath of my teeth, I have ordered some teeth whitening liquid that goes in the same trays. After a life of coffee, and lately a lot of green tea, my yellow teeth will appreciate it.
But no facelift.
Both my bitches (2-legged and 4-legged) are gone, and I don’t like it.
Brigitte’s friend from Bremen, Sandra, is in town. Living up near the North Sea, and just a German in general, she did not come to SoCal for the cool breeze of the Santa Monica Bay. They went to Palm Springs today.
And they took Suzy w/ them.
After a day of work (real work, for a change) on a stage in Studio City, I come home to an empty house. I disagree.
Here are a couple pix from the last time we were in P.S. – March 23, our wedding anniversary.
Hotels are cheap in P.S. right now. Another thing to attract a couple German gals who just want to lay by the Mid-Century Modern swimming pool and soak it up. Suzy will be in the shade, even if she finds another dog w/ whom to play.
New word for the day: neuropathy.
Here is a definition, and it describes it well — Neuropathy is a collection of disorders that occurs when nerves of the peripheral nervous system (the part of the nervous system outside of the brain and spinal cord) are damaged. The condition is generally referred to as peripheral neuropathy, and it is most commonly due to damage to nerve axons. Neuropathy usually causes pain and numbness in the hands and feet. It can result from traumatic injuries, infections, metabolic disorders, and exposure to toxins.
See the last word? Toxins, all right. They were called Etoposide and Cisplatin. They saved me, I guess. I KNOW that they also poisoned me, and this is one of the outcomes. My feet and legs sometimes tingle. I went to that neuro doctor about a month ago, and he told me not to worry, and it will subside. The body DOES do a good job of healing itself. All it takes is time and a good diet. Have I mentioned sugar in the past?
I guess this condition will go away. Eventually.
On a more positive view, I’m working a fair amount (Am. Idol and other reality crap that is union work) and doing just fine.
Brigitte says I should probably start thinking about going on a diet. Seems that she can see actual weight gain. Sure enough a neighbor’s scale showed 152 lbs! That’s three pounds in about one month, right as predicted. Three pounds w/o going crazy w/ flesh, eggs, bacon, etc (a ‘w/’ and ‘w/o’ in one sentence; you’re welcome).
Today I did a job downtown at the Edison, a bar I should have visited after the first time I was there working (Entourage, I think). http://www.edisondowntown.com/main.htm Now I can’t drink even the virgin cocktails; simple syrup, you know.
Anyway, it is 39 steps from the alley (I don’t think there is even a sign out front) down to the bar. No elevator. GOOD workout. In the morning we saw numerous downtown loft dwellers jogging down the alley carrying 25 lb. balls. They pay some gym for that. Me? -I did the Club 728 (IATSE union) workout; earn while you burn! And I feel good.
It also feels really good to be a working stiff again. I want more work, but sometimes Hollywood just gets a bit slow. It is that time of year.
OK, I’m being called to a dinner of Black Bass, kale, and sweet potatoes.
It’s Sunday night on Memorial Day weekend, and I’m reflecting (while trying to avoid my belly button) on my day. I think that my new eating and DRINKING habits have just made this particular American holiday null and void. Some would claim that Memorial Day is a day to honor our fallen soldiers. It is, and I will fly my flag tomorrow (I don’t even know if the official holiday is Sunday or Monday). But here in sunny Southern California Memorial Day is seen as the start of summer, w/ the attendant rituals of beach, grilled flesh, and beer.
I have adjusted to life w/o alcohol quite well so far. As I can have the occasional glass of red wine (it’s written in a book, so it’s OK!), I am not a complete teetotaler. My cabinet full of liquor has not been talking to me b/c I know I cannot have it. I even made a holiday cocktail (Marguerita on the rocks; we had two limes in the house, and the jar of simple syrup I had made was still sitting in the back of the fridge) for Brigitte. Ditto w/ the few bottles of beer that sit in the same cabinet: “That beer ain’t worth getting cancer.” All that is in that cabinet sits there peacefully waiting for someone else to drink them, w/o a thought from me.
But on Memorial Day when you’re at the beach w/ your best gal, your dog, the sun, the surf, and a thick layer of sunblock, you’re EXPECTED to be consuming a bit of fermented brew. It was my first Memorial Day Manqué.
I know I can get by. I just gotta get my mind right. Being Sunday night, we watched our $17/month TV show (Mad Men on HBO), and I know this feeling of mine is just some Madison Ave. creation. I’m bigger than it; I just have to free myself.
Next diet crisis: Thanksgiving.
Brigitte says the waves and curls are just a bit too much. Take a look now, b/c they will soon be gone. As I don’t see my own hair except when I’m brushing my teeth, it doesn’t matter to me. We’ll see what Brigitte wants as my new hair style. And then we’ll see what Ol’ Onco (you remember him from my dry mouth/cachexia days, now I’ve decided to give him a name) wants.
This little bit of Internet nonsense took another hour of Photoshop trial and error. Now I’m an animated GIF-making motherfucker!
I’m making up for lost productivity. When not working (for money), I’m doing the usual homeowner chores. This week I’m making a gate to replace one on the north side of our house. It’s fun to be a craftsman who is not in a hurry. Measure twice, cut once. Think long. Pix to come.
The cancer is still, and always, in me; it’s just asleep. So this blog gets to divert to things of quotidian life. No drama, just life. But have no fear, health insurance tribulations and American Cancer Society volunteer work will keep me somewhat on-topic in the coming days. Stand by.
Oh, what’s your opinion of my new hair?
Bobby Ewing, eh? So says a faithful reader from Berlin, Germany. I think Angela Merkel is a big Dallas fan.
My hat is better. And my Western shirt is a WRANGLER, not some Korean knock-off w/ buttons instead of pearl snaps!
I haven’t had to cut the hair yet. Maybe after I show these sexy pix to Brigitte, it will be growing out into that beautiful 70’s style. Just a little bit of ear showing, so it’s not too hippy.
This last weekend I had to apologize a lot.
I was Entertainment Chair of the American Cancer Society fundraising/awareness event called Relay For Life. I was recruited for this event by a member of Councilman Bill Rosendahl’s staff. Glad to support cancer research, glad to ingratiate myself w/ the my councilman’s office, glad to recruit talented non-pop musicians to perform. NOT glad to do all this for work over months (scouting talent) in order for them to perform on a football field for NOBODY.
The American Cancer Society failed in numerous ways:
-Little publicity of the event. I live about 6 blocks from Venice High and saw no signs in shop windows, no posters, not even signage AT the event on the day.
-Poor recruiting of ‘teams’ that actually do the walking around the track on the day. There were only four, after four months of recruiting time.
-Poor recruiting of vendors. No food vendors on site, no medical vendors w/ information about their services. Whole Foods donated some pantry items for snacking, but it was not made obvious w/ signs or banners.
The bands and jam sessions that I had recruited over about four months ended up playing for themselves, and me, the the soundman, and about 15 ‘team’ members who just sat under their awnings and chatted among themselves. It was depressing. And embarrassing.
Yes, much of the work on this ACS event was volunteer, like mine. And there were only four committee chairs, myself included, even though about 8 committees needed to be filled. If there are not enough volunteers for the event to be run properly, ACS should step in and fill those positions, or cancel the event. As it was, I can’t imagine that there was much money, nor anti-cancer consciousness raised.
Yes, I guess advertising DOES matter.
OK, I’m done ranting.
More about hair and food later!
Ah, the old times. Only now it’s Old Times Lite. No more poisoning. Not too much. No more radiation. Not too much. But still loud-ass sci-fi machines and IV’s of imaging liquids (Gadolinium) to allow better viewing of ………. cancer?
Here are shots of the very loud MRI machine. I’m glad they provide ear plugs. The head cage gave me warm feelings for the one I used to wear down in the Sunburn Dungeon (it’s now hanging in my garage).
And here is an image of my head. Whaddya think?
Then it was time to feed the meter (Santa Monica, you know) and on to the PET/CT scan. I was so happy to be getting a CT after just reading an article in the new Time about the overuse of CT’s and the amount of radiation. “Oh, but this is much less than the old CT’s,” says the earnest technician.
“Right this way, Mr. Mason.”
“You remember from last time; no babies or small doggies for a while.”
Then a little refreshment: it’s a smoothie, see!
This is the radioactive liquid that will enhance the imaging. Says ‘creamy vanilla’ on it. Mmmmmmmmmmmmmmmmmmm. Also says ‘barium sulfate suspension’. Mmmm.
Then I get tucked in (that machine likes it cold), and it’s another 33:00 or so. Not quite as loud as the MRI machine. I could have listened to some music if they had a stereo. That would be nice; wouldn’t it?
Another $11,296 billing and $3018 payment. That information right there indicates a couple problems w/ our current health care/payment system.
So now I guess I’ll have to go see my chemo Dr. in a few days to be told that everything is fine. But if I get booked for work on that same day, I’ll miss that appt.
I wasted 2 1/2 hours recently at UCLA; my chemo Dr. telling me that the scans revealed nothing. Actually it was ‘we’, as Brigitte went along to be there for this important report. Whatever.
I’m eating right, drinking right, exercising right, and thinking right; next time I think I’ll just make a phone call.
I’m not even concerned about my weight; 150 lbs. I feel fine, am lifting weights for that special Iggy Pop look, and am about 80% on stamina/energy toward the end of the day. I was gaffing some boring interviews last night and laid down (on two furny pads) at around midnight. I came to at 1:AM. They were just finishing. I got up, saved the lights, and went home. No harm, no foul.
The other day was the first day of service at the most western station of the Expo Line. http://www.metro.net/projects/exposition/
I felt like I live in a real city. I got on at National/Washington and rode to 7th & Flower in downtown L.A. 29 minutes. A walk around the block and back on the train headed west. Someday I’m going to park at the station and go to work on public transportation. Well, if the job is near the station, and if trains are running when we wrap. And I don’t need to carry much gear to work. THEN I’m gonna do it! I’ll be so cosmopolitan as I read my Kindle on the way to and from work. Like in a big city. Like a city that plans for the future and thinks about quality of life for its citizens.
Speaking of quality of life, I saw that of which I have been reading in the paper; obesity. Disgusting, out-of-control obesity w/ no concerns or efforts to control it. It IS a social phenomenon, I guess. It certainly is a class-related thing.
The Expo Line goes along Exposition Blvd., which traverses areas that seemed be largely black and lower middle-class. The obesity was alarming. Living 1.5 miles from the ocean (high real estate values), one does not see this very much. In areas w/ less money and less education you can see very easily the results of cheap fast food vs. not-cheap whole foods that one has to seek out at a farmers market or upscale grocery store. Of course, there are dirt-poor people in Peru or Vietnam, but they are not bombarded w/ subsidized corn products, sugar, and the advertisements that promote them. Michelle Obama is doing great work w/ diet/nutrition, and we should ALL support that.
After all, those whales are going to cost you and me more than a healthy person.
A race thing? No, I see and think the same thing every time I go to Dallas. North Dallas w/ all of its white, non-poor Republicans in their 12 mpg vans. Cultural/social thing, you know.
On Sunday I was in the back yard doing something semi-worthwhile. The wind was a bit gusty occasionally.
“Hey”, I said to myself, “that sounds like the Dead.”
This went on for a few minutes. “That sounds like ‘Bird Song’. And it sounds live.”
And it sounded good!
I told Brigitte that I had to go investigate. I got on my bike and followed the sound. About ten blocks to the southwest I came upon a block that was blocked off w/ a kids’ air jumping house (no clue what those things are called) at one end, and a band standing in the street in the middle of the block. I slowly glided my bike toward them and felt that it was 1983. At a Grateful Dead show w/ bunches of kids running around. No smell of pot; I was a little disoriented. They were playing an original tune that I did not recognize, but the sound was 99% Jerry Garcia, Bob Weir, Phil Lesh, Brent Mydland, and Bill Kreutzman (only one drummer, not two). The guitar player (Jim ?) was playing a guitar that was made to emulate Garcia’s tone, down to the type of wood used. And he played it very well. I was standing in the middle of the street reliving one of the 27 Dead shows that I attended. But I had never been able to walk around the band and watch them from the side and back.
It was fantastic. They were The Dead.
Brigitte and Suzy even showed up, as I called and said that I would be here for a while. Sure, Suzy was excited to see me (more than 10:00 apart, and it may as well be two days), but I think I saw here sort of shake her hips like a stoned hippy chick in a long flowing dress. I’m pretty sure that’s what she was doing.
I made the acquaintance of a fellow Dead Head who heard it from HIS house also. And I think most of the block there were at least familiar w/ the Dead. On Sunday, my opinion of this part of town went up exponentially.
The keyboard player knows Robert Hunter (Dead lyricist), who is supplying him w/ some songs. BTW, he lives on that block also; they were playing directly in front of his house. They call themselves Crater Mountain, and there is NO trace of them online. They will be recording and releasing a CD soon. When it comes out, you will be advised.
Man, my interest in pop music has gone to zero, and I don’t care. Since 1995 (’94 actually), I have seen very little live music. I really should do so, but ……………. There Is Nothing Like A Grateful Dead Concert.
OK, this is the last hair post. But if YOU woke up w/ this do, you’d probably START a blog!
As she was laughing and shooting pix of me, Brigitte told me to go cut my hair. Well, perhaps that time has come.
Because I’m not going to be putting ‘product’ into my hair ——-
Looks, uh, much better. Right?
Bobby Ewing is back on the air, so you can see the curls every week. Actually, once I cut these curls down, I guess me and ‘ol Bobby might STILL look alike
It’s a disconcerting time. Nausea, diplopia, dizziness, normality (normalcy is not a word, a neologism at best), fatigue, strength.
On Tue morning I woke up feeling strange, got up dizzy, stumbled to the bathroom, puked, repeated, got up and looked in the mirror to see two of me. Brigitte asked if I had hit my head (Gehirnerschütterung). Well, matter of fact, the previous day on a stage in Hollywood I had lightly banged the back of my head on a pipe while up high striking a light. This little bit of news scared Brigitte quite a bit, as her older brother had a concussion long ago, six months before a grand mal seizure that changed everything until his death in ’10.
I was feelin’ mighty low. We went to the Westside clinic of the Motion Picture Fund, and the Dr. there was adamant that we get to an emergency room so I could be properly checked out. Not a happy time for us.
This July 3 was a great day to break a leg or be scared by your own body; the ER at St. John’s Health Center in Santa Monica was damn near empty when we entered. No wait. I was lucky to be in the hands of Dr. Dominique Fontenette in the ER. She looked, listened to me about my recent, uhhhhh, history, and ordered the appropriate (to me, at least) tests. And then scans. Oh yes, my friends the scanners. All I gotta say is, “Thank god for Motion Picture Health and Welfare.”
MRI, CT scan (what’s that, about $8000?) told them I had no thrombosis from any concussion. I tried to hide from Brigitte a printout on thrombosis given to me by Dr. Fontenette, as this is what befell her brother years ago. She eventually saw it, and I tried to downplay it.
In any case, these blood tests and scans showed ………… a fucked up left sinus due to some sort of trauma. Yeah, we know. The rest? – ‘grossly unremarkable’. The end paragraph of the radiologist’s report is my favorite: Normal brain. Love that!
Anyhow, by this time (4:PM or so) I was feeling fine. Diplopia remained, but I noticed it was only when I looked left. Look right – one vertical line. Look left – two vertical lines that got a long way apart. Look straight – almost normal. As I had experienced diplopia (by now you should know what this $10 word means) previously, I knew it was from a nerve injury and the body would heal. What I DIDN’T know was how long it would take. In ’95 I had a motorcycle roadracing crash that left me sidelined about 6 months also, and a case of diplopia that slowly healed over about 9 months. But that was a VERY HARD knock on the head as I impersonated a missile sliding along the ground, until I slammed into a downed bike in Turn 8 at Willow Springs (Fastest Road in the West).
On the way home I told Brigitte to NOT scrap her plans of going to Germany for two weeks (Dad’s 80th b’day, family visit, and surf Biarritz w/ her best friend). And by Fri I took a job on a regular gig, some lame reality show (but a UNION reality show w/ UNION hours toward my Health & Welfare). That day was at the Queen Mary. Oh, BTW, there is no elevator above the Promenade Deck. We had lights and cable up there. I was very pleased (no irony; I actually was glad to do it) to lift and carry those 90 lb. cables up stairs. And then back down later that day.
It is now Sat. afternoon and the diplopia is gone. Oh, the day after our ER drama Brigitte got up and puked her dinner, or whatever was left after a night’s sleep. So maybe this was some sort of virus. A 6-hour flu? No diarrhea, so we don’t know. And just like me, she was fine about 6 hours later.
She got on that SwissAir flight the evening of July 4 and went to Zurich. No problems. The main problem is I’m alone here. Not really; Suzy is w/ me. We’re going to Skype someday soon so she can see me and make funny sounds for Suzy. Suzy actually DOES watch TV, but I wonder if she can make the connection w/ that picture and Brigitte. I might put her pillowcase next to the Mac when we do this.
No new pix of note, so here is one from an ad I put in craigslist. Wanna come and dig up some of our bamboo? Lots left; come on down!
Brigitte is out of town (father’s birthday, and seeing her family and friends), so it is now time for Chuckie to go on a garlic orgy. She is allergic to garlic, and one does not eat garlic if one’s mate does not.
I recalled one of the best coleslaws I’ve ever had; a garlic bomb from Vincent’s Seafoods in Dallas in 1979, when I was hired to learn and become a bartender. That skill helped me pay the bills as I went to college.
How did I get the recipe? I found the one remaining Vincents, called, told them I was an ex-employee, and asked if they could email the recipe.
“Well, we don’t have any of email, or nuthin’,” said the old gal who answered the phone. “Can you hold on a minute?”
One minute wait.
“OK, you ready?”
She then gave me the recipe, adding that the mayo needs to be ‘high quality’ and it’s just ‘vegetable oil’, don’t know about what kind of vegetable.
Cabbage (crisped aka cold)- 1 gallon
Water – 1 qt.
Apple cider vinegar – 2 cups
Salt – 5 tbsp
Mayo – 2 cups
Vegetable oil – 3 cups
Fresh ground garlic – 1/4 cup
Well, I wasn’t about to go back to Whole Paycheck for the second time in one day, so I improvised w/ quantities (1/2 gallon of cabbage) and the oil I had on hand (grapeseed and olive) and the vinegar (white balsamic and rice). All I can say is don’t worry TOO much about anything except the GARLIC, baby! Raw. Raw garlic. Raw garlic that packs a punch and makes you strong.
This takes some of the torment out of bachelorhood for me and Suzy. Well, just me. Suzy still often stares at the door to garage, waiting for Brigitte to return.
I think I’ll have it as the main dish for lunch tomorrow. Wanna kiss?
Here is someone (is that you, Sheriff?) who is willing to read back more than two days. He wrote this about the photo of me in the LBJ hat that I posted a few months ago.
——— Eisenhower wore those too. The Open Road is the best hat going. ‘Specially if you’re from Texas. Looks good on you and everyone else with enough stones to rock it. You Scored getting one vintage that clean. “Cowboy” and “dogie” remarks betray the insecurities of those making them, I’ve come to realize. ———
I’m not sure I agree w/ his assessment of people who comment about me and my hat, but it’s always nice to get comments. Stones to rock it? Damn, I think I’ll be wearing that hat more often! “Just 153 lbs, but he has got the stones to rock it,” says the easily-impressed debutante as I pass by.
Here is a photo of Ike that he also sent me.
Man, they DID have some style back then! 3 or 4 shades of blue and that tight check pattern: nice.
Today’s LATimes says that Rupert Murdoch (pictured w/ his Asian daughter, uhhhh, wife) has just done some PR work in Hollywood by tossing $20,000,000 to the Motion Picture & TV Fund. Good move. A lot of that money may go to the Woodland Hills old folks home that is for Hollwood talent and crew that are …………. old. It’s a good concept for an industry full of free-lancers who do not work at one company for 35 years, and get retirement benefits. It is in conjunction w/ the unions that work in Hollywood. Oh yes, I support my union!
He gets good feelings from a lot of HW big shots (Clooney, Spielberg, Cruise, Wasserman, Katzenberg, etc.) and film workers like myself. I’m gonna have good thoughts for him until the next egregious lie from Fox News comes out. Really, I am. The old guy is perhaps starting to see the effects of some of his decisions in the past, and maybe is thinking about what his legacy will be. I don’t think the tall, thin gold digger seen w/ him in many photos will be spending all of her time and effort promoting his good name after he checks out.
There is even a reader of this humble blog that may benefit from ol’ Rupert’s largesse. Bigger staff, Lesli? New furniture?
That reminds me; I’m due for my annual check-up at the Westside MPTF clinic. Hmm, maybe I need some XRays. CT scans? Maybe just some radioactive liquid to drink. “Mr. Mason, it seems that you are glowing. We’re going to have to take some scans in order to see just how much. Don’t go near babies or puppies for the next week.”
I just got the bill (THIS IS NOT A BILL) from St. John’s Health Center. That, you recall, is the Emergency Room that I visited on 7/3/12 after the dizziness, diplopia, etc. Scroll down for all that.
Here are some highlights:
$2589.80 – Cat Scan Head
$6146.00 – MRI Brain
$2147.00 – Emergency Dept. Fees (would that be the same for 5 stitches on a cut?)
Labs, pharmacy make up the rest for that impressive total you see in the title.
THIS IS NOT A BILL because St. John’s is billing MPIHP (Motion Picture Industry Health Plan – haven’t I told you that already?). In the past, I would pay nothing. As healthcare gets to be more of a racket, I imagine that I will be on the hook for SOME of this; I just hope it’s not too much. I’m working now, but I was unemployed for 7 months. And mortgages never sleep. Ditto life sustenance.
When I get the MPIHP statement, I will give you the details. I’m guessing they’ll pay about $3500 and St. John’s will take it. The world of medicine and insurance; racket from all sides.
Once again, god bless my union and my health plan.
I thought I had already put my chocolate recipe here. Guess not.
I have cut out ALL sugar (refined) from my diet. Yes, that includes HFCS and grape concentrate (or whatever it’s called). My mind is right about no sugar, but the mouth often wants something sweet after a meal. I keep fruit in the house for that. And fruit that is low on the Glycemic Index; cherry, apple, pear, plum, orange, grape, kiwi.
Refined sugar is quickly absorbed into blood, raising blood sugar. Get it! The pancreas then released insulin. Not good; insulin promotes cancer cell growth. And don’t think just b/c you don’t have any tumors that you don’t have cancer cells.
Anyhow ………. chocolate. There are numerous claims that chocolate, or ingredients of, are some sort of great super anti-cancer weapons. OK, good. I just like the taste of chocolate. I snooped around and found a recipe for sugarless (refined) chocolate. After a few batches, I have come to this:
1 cup cocoa butter – grated
1 cup virgin coconut oil
1 cup raw organic cocoa powder
3 tbsp. Lucuma powder (for creaminess)
3 tbsp. agave syrup
20 drops Stevia (some smaller bottles have a dropper)
A dash of salt
1 handful cut/crushed almonds
Use or fashion a double boiler on low heat just to melt it all. Stir. I discovered the concept of tempering from a co-worker. I take it off the heat for about 30:00 to cool it to 80 degrees (get a kitchen thermometer; 0-200 degrees), then put it back on for a few minutes to go back up to 88 degrees. Stir often. Mysterious kitchen chemistry then gives the chocolate a certain surface gloss so it is not QUITE as gooey when eaten. I still have to lick my fingers, but it’s a bit less messy. I pour it into a pie pan (my 12″ pan makes it about 3/8″ thick) and refrigerate after it has cooled a bit. Next morning I break it up and put it in some plastic container that is kept in the fridge.
No, I don’t have the nutritional information. It has fat for me to add weight, it has some cancer fighters, and it has no refined sugar. It’s GOOD, and it’s GOOD for me.
I get most of the ingredients at Amazon.
One could add numerous things to the mix aside from almonds. I’m considering some peppers, cayenne powder, herbs, seeds, etc. But since almonds are another super-duper cancer fighter …………………………………, and they taste good.
The rest of the ingredients
It’s cooling back down to 80 degrees……
…….and now it’s heating back up to 88 degrees.
Then I let it cool, stirring often, pour it into a non-stick pie pan, and eventually put it in the refrigerator. Tomorrow I will break it up.
I have a few happy customers, including a couple young girls, so it passes the kid sweetness test. Brigitte is not fond of the Stevia flavor, but then she grew up in a German cafe/konditorei, so she has rather high standards for chocolate. And she, like us all, SHOULD avoid sugar, but so far, does not HAVE to do so. (4 commas in one short sentence; not bad!)
Mmmmmm, oh yes, formally warm, now cold brown on white chocolate action! Mmmmmmm, so creeeemy, baby. Oh yes, it’s so big around.
And so on. It is about 1/4″ thick.
I forgot to shoot photos when I was making it, so here are a few shots of ingredients (all from Amazon). Sorry, no pix of brown sludge in an improvised double boiler. You have the recipe from below, so git on out to the kitchen and make something that is good AND good for ya.
Enough porn now.
This batch of chocolate will melt too easily b/c of the failed tempering. Thus, it will not be travelling. From refrigerator to mouth will be the extent of its journeys.
Cacao butter. A little goes a long way.
There are numerous brands of cacao powder. I am limiting myself to the organic stuff just b/c I figure industrial food and produce is not worth getting tumors again.
I must credit that phrase to Brigitte; “This (burger/candy/junkfood/general low-quality food) isn’t worth getting fat over.” ——————-Words to live by if you have cancer.
Some gal thinks I’m ‘awesome’ or something, and then subscribed to this blog.
Well, who doesn’t like being liked?! So I went to her site/blog and looked at some of her photos. As I told her in a note, when you shoot macro, crush the blacks, and pop the chroma you got some real photography!
So here’s to ya, Rona Black, and a few of my macro/artsy shots.
I just got the bill from St John’s for my ER visit.
St. John’s billed $11,716.90.
Motion Picture (MPIHP) paid $2177.
I pay $353.
What other service outfits agree to an 80% discount? If it was ME instead of my insurance company, for what would the hospital settle? Could I send a check for 20% of the amount billed and avoid jail time? I find this game deplorable. Maybe ‘game’ is not accurate to describe the health care industry, but this whole market is being gamed. Gamed by the vendors and insurance outfits. The market is not working. Just like the railroads of the 19th Century and stock market of the ………….. any time, this industry needs regulation and policing. After all, healthcare is certainly a big part of ‘public safety’, and I believe the US Constitution mentions that somewhere.
Next: more chocolate porn.
Sorry, dear reader, but I’m making hay while the Hollywood sun is shining, and saving the chocolate for later. So no chocolate porn this time, as promised in the previous posting.
I went to have my annual checkup this week. I have LOST weight; now it is 147. Or just 147 on Monday; doc said it fluctuates a bit. Yes, I know that, but that is about a 5 lb. fluct that I don’t need. I feel fine. Whatever. Doc (Thomas Hascall – Bob Hope Clinic of the Motion Pucture TV Fund in Hollywood) takes a real interest, and one of his suggestions was 3 (THREE!) egg whites per day for protein.
I like Dr. Hascall. As I yelped ‘Whoa’ and proclaimed all of my diligent anti-cancer, good-boy diet w/ lots of ‘good’ protein, he just gave me a deadpan, pursed-lips, crooked-head stare. “Do I come to your sets and tell you how I think it would be best to set the lights?”
“No……… but I’ve got a few books on cancer diets and health, and ………….”
His look said all that was necessary. I like that guy.
So, got any egg-white recipes? Don’t bother me w/ omelet stuff; how about ways to incorporate them into various dishes? Think it would go well in sugar-free chocolate? 21 egg whites per week is a lot of damn egg whites.
And Tue > Fri? Working, baby! 4 days, 3 shows; “Ben & Kate”, PetSmart commercial, and “Body of Proof”. All these gaffers and Best Boys know my ‘situation’ and are still calling me. May they all have only good things betide them!
This posting was stuck in the ‘Drafts’ folder, and I just noticed it. Better late than never. Not that it’s breaking news or anything………..
It occurs to me that ‘diet’ has a few definitions. I tend to use the first. Many use the second.
diet 1 |ˈdī-it|
1.the kinds of food that a person, animal, or community habitually eats : a vegetarian diet | a specialist in diet.
2. a special course of food to which one restricts oneself, either to lose weight or for medical reasons : I’m going on a diet.
Looking closely at the second, I guess I could say I’m in group #2, same as most every woman in America; I’m restricting my ‘diet’. I just want to prevent the tumors from returning. Most restrict in order to lose weight, but that ain’t me right now!
So here are a few statements from a faithful reader/consultant/friend …………
Thanks. And instead of faithful reader, it could be – confessed ‘white foods’ addict 😉
P.S. A lot of fat in chocolate, huh? Two cups for one batch! Good fats, I know. No judging, just more than I thought. Also, no mention of savory or pungent chocolate –where’s that garlic? Actually, if you roasted the garlic first, it could get interesting.
I want to try it, and also wonder…………just how much did that homemade chocolate bar cost you? (as in dollars and cents) Wherein you could ask me………just how much did that traditional chocolate bar cost you?? (as in sugar, fat, unhealthful side effects) And you would be right. So, I am going to share something with you –
I am on a personal journey at the moment. Not trying to cut out/take away any thing garbage wise, junk food, fast food, white food. For someone like me, who was raised that food is love, that food is a coping mechanism, if you say anything that smacks of denial or depravation, ‘taking away’ a security blanket turns the panic sensors on high alert. Pathetic yes, but there you have it.
But, instead, I have turned it the other way around. I am giving myself all the powerful nutrient dense vegetables and fruits I can hold, a minimum of five-six full servings. After that, I can have all the crap I want. Cookies, ice cream, chocolate, fast food, etc. The trick is – I don’t want it any more, I’m too full to eat anything else. Not that I can’t have it, I just don’t want it.
Something good is happening. Having just completed the first full week of this (and I’m sorry to say that eating more veg/fruits was not my idea, there is an organizational/team competition going on right now) my taste buds are already changing. The natural taste of food is better. A small amount of sweetness is potent, fruit tastes like a treat. And this morning I woke up with a renewed energy level. I had always said I needed to face my demons and change my lifestyle before I hit 60. (I expect to live to a minimum of 90). Well, I just turned 58. Two years, to accomplish a lasting, permanent change. I feel like I’m trying to kick a drug habit.
They say that if your share your goals and your journey, you have a higher likelihood of success. So, I’m putting it out there. Your blog actually helps me, as you live it and work it. Thanks for that. Now if you will excuse me, my broccoli & cauliflower are waiting.
Currently, my restrictions are for a different result, but I am realizing that we ALL should restrict ourselves to a HEALTHY diet. Lose fat, fight tumors, feel better, etc; w/ some variations it is the same diet for everyone over the age of 5.
Brigitte is allergic to garlic, so Chuckie’s Garlic Chocolate is way down on the list. But maybe some cayenne chocolate! I’m taking non-sugar/non-chemical suggestions, but only if you have the recipe, AND a testimonial.
No, it’s not for the coming bitter cold L.A. winter. It’s my latest anti-cancer chocolate.
See the previous post for the main recipe. This time I used FOUR tablespoons of Lucuma powder, SIX tablespoons of Agave syrup, and approx. 12 or 15 drops of Stevia. But the main difference was a good 5 or 6 shakes from the spice jar of cayenne pepper.
A little something as it is chewed, and I nice little kick as it is swallowed. Just like a glass of fine wine. Hmmmm, I might have to save a bit of my (almost) daily 8 ounces of red wine in order to chase down dessert!
See, once you get past the torture (aka treatment), this cancer thing ain’t so bad. Just gotta get your mind right. Now excuse me, I have to go read some Yelp reviews on local vegan restaurants.
Perhaps this little blog CAN provide some healing power.
Here is 17 minutes of music to make you better. Matter of fact, I DID listen to precisely this show while I was being blasted w/ the Radiation Death Beam in Sept, Oct, and Nov of ’11.
This is from a shop (Reflections) http://www.simmsmanncenter.ucla.edu/ at UCLA. They sell things for cancer folk, mainly hats, scarves, and wigs. But they have a cabinet of supplements for people like me who realize that the cancer is IN me, and I need to always strive to keep away the tumors.
So here are a couple new items that I’ve discovered, or realized was not consuming enough. (awkward syntax; sorry – at least I didn’t end a sentence w/ a preposition!)
Fish is for weight and something else. D is for bones and something real important. When in doubt, I’ll just figure it’s a good antioxidant. Wipe that smirk off your face, dear reader – I’m glad just to remember The List of what is Anti-cancer and what is Pro-cancer. Remembering, and first learning, the reasons is usually the result of a 6-year degree.
Time, and more education, will tell whether I need to consume these supplements from here on, or just for a while. This is in addition to turmeric (or curcumin) and resveratrol I take already. As such, I fit into a very large cohort; those who support the medical/pharmaceutical complex w/ their absurd belief in pills over nutrition.
Now git on out there to Whole Foods, pick up some organic vegetables and whole grains, fix your own dinner, and …………………….. Bon appetit!
Remember a few months back I was complaining about the medical/pharmaceutical industrial complex and the manipulation of charges? Seems that the LATimes has noticed this also; http://www.latimes.com/business/la-fi-hospital-prices-20130509,0,484089.story
Read it (and my rant), and then start asking questions of your doctors, their staff, and your medical insurance company. We defer to our doctor’s knowledge regarding our medical treatment, and rightly so. In an emergency or life-threatening situation the response is usually, “OK doctor, let’s do whatever it takes.”
And that is the point at which we become candy for this whole racket.
My surgeries? I did as I was told, and have no regret. Those two quarterbacks threw the long bomb and won the game. Chemo and radiation? Same thing. It was all at UCLA and I was under the care of a ‘team’.
But now I am in the maintenance mode, and that will last a lifetime. I have declined antibiotics from various doctors a few times because the situations were not grave, and I know about the general over-use of these drugs in our society. Overuse that leads to unsavory consequences individually and as a community.
A few months ago I expressed concern about all the radiation I am enduring due to treatment and follow-up. Consequently, my oncologist told me that an MRI only would suffice for my subsequent scans. We could skip the PET scan radiation bomb. All I did was ask. Well, maybe complain and then ask.
And now the next time I have a scan (June ’13), I will also make a few calls around to various imaging clinics just to see what these pictures are going to cost. Or maybe I’ll just call Motion Picture Industry Health Plan and ask them if they pay the same rate no matter what the vendor may charge. And then ask what my co-pay would be w/ various charges. MPIHP used to be fantastic, but now it’s just very good; there are a lot more co-pays than in the past.
Keep your eyes open, dear reader, look for the big picture, and ask a few questions.
OK, this won’t be just a continuation of the rant that comprised my last post.
Not completely. First I want to write something positive.
The, uh, weather has been quite pleasant lately in Mar Vista.
Uh, for a couple weeks we fostered a little brown bitch who is a good girl. We liked her, and hope she finds a good home. She was called Mini (Minnie by Brigitte), as she looks quite a bit like Suzy when she was a pup.She is still up for adoption. If you’re in West L.A. and want a good dog, send a mail or comment, or whatever it is.
The garden is coming in well.
The tomatoes like it. I’m on a second planting of lettuce (see one, left of tomatoes, that has bolted – I’m saving seeds, like Monsanto hates). Herbs like it. I like the drip irrigation I put on the old lawn sprinkler circuits. And see my redwood fence I did a few months back.
Oh, this blog is about cancer and one’s experiences. That definitely includes one’s experiences w/ the Medical/Pharmaceutical/Insurance Complex. But, dear reader, there are even positive things within that whole domain.
I had an MRI on 6/9/13. The radiologist at Beverly Tower Advanced Imaging Center reported it looked fine, but there was something somewhere about which he was not quite sure. My ENT, Dr. Finerman, later told me he “is even more compulsive than me,” but that I should probably get more pictures. Only these pix would not be of the non-radiation MRI kind; these would be of the radiation bomb PET/CT kind.
Great. To fight cancer we use radiation. To check up on how we’re doing, we use radiation. So much radiation that they put you in a small room before they blast you with radiation. That room is lined w/ lead, it appears about 1-2 mm thick. Why? Because before you go get blasted, they INJECT you w/ a fluid that is RADIOACTIVE. The lead contains this radioactivity so innocent passersby will not be harmed. You, the patient? Sit still. Don’t move. For about 1/2 hour. Then you are later lead to the Death Beam in a cold room, situated on the plank (w/ heated towels) and instructed to not move for about 30:00.That part was the goal toward which I was struggling for one month; a goal that I did not want. Some radiologist did. OK, I defer to the experts.
Unfortunately, an expert oncologist who helped me in the past has an office staff of humans who seem incompetent, careless, and lethargic. A scheduler who never answers her phone, returns voicemail 10% of the time, and seems not to be able to do her JOB by navigating the world of insurance, referrals, authorizations, and approvals.
Eventually, I decided to leave that doctor and his staff out of the loop; I went back to my ENT (Dr. Matthew Finerman in Century City)for the new scan scheduling, and even further back to my MD (Thomas Hascall at the Motion Picture Bob Hope Clinic) for the all-important referral so that I would have 100% payment for this very expensive procedure. Both good men w/ competent staffs.
But then, one has to deal w/ voices on a phone line. Over the course of one month I almost became phone pals w/ a couple people as I tried to connect the dots of referrals, imaging centers, schedules, authorizations, procedure codes, perceived lack of authorization, on-the-job training for kids in call centers, etc.
And I might still be waiting if not for the prodigious network wrangling and kickass phone skills of an old Motion Picture TV Fund friend, Lesli Leder. I met Lesli in ’95 on another little detour involving motorcycle racing and brain damage, but that was before the advent of blogs, so ……………………..As the imaging center found out they did not have ‘authorization’ (they did) only one day before I was to go in, they called me and rescheduled to 8/20/13. A couple days later I went to see Lesli regarding a photo assignment she had given me for her new office. While there I mentioned the latest snafu. Ah, it’s always a pleasure to watch someone do their job really well! Wrangling approvals, authorizations, doctors offices, and vendors is not even her job, but she’s good at it.
I was under the gun two days later.
For this scan there were many rules, including a lot of meat consumption the day before. I realized that I just don’t do that much anymore. I like meat; it’s just not as special as it was in the past.
Excuse me, I have to go attempt a tempeh lasagna w/ garden tomatoes and herbs. Stand by…………..
It’s been a while, dear Reader.
But I now have some pertinent SNUC-related news and views.
It appears that I will not be living in an area, ever, that is dry. We took a week-long trip to The Sierras last week. Beautiful, high, and dry. Most all places we stayed overnight were under 20% humidity. By the second night I was having trouble breathing through my nose. A few days later I became a mouth-breather. I even drooled a few times, always out of the right end of my mouth. Charming.
And so now I’m back in L.A. (right now it’s 79% humidity and 69º in Mar Vista), where I never knew I had it so good. I went to Dr. Finerman (super ENT that got this whole SNUC ball rolling) and he ‘cleaned up’ the mess as best as he could. Mess, you say? Propriety and my wife prevent me from showing you all the glorious blood and phlegm that I now produce. Just imagine a radiation-damaged and dryness-parched nostril putting out a big RED drop of blood at a rate of 1/second. Fortunately, we have wood and tile floors. Sinks too. Actually, notice that black spot on my nose; that’s dry blood. And the reddish tone to my right nostril ………….. you get it.
And I will henceforth be The Man in the Big Hat whenever I go outside on a sunny day. Often w/ a collared shirt. B/c my neck and jaw have received 100% of allotted radiation for life. I have other hats, but I’m partial to this Stetson Cattleman that was left by my Dad last year after he checked out (at age 92 -1 day).
To let Brigitte sleep just a little, I will be sleeping in ChuckSNUC HQ (aka office) for the next few nights. On Sat. I will remove that large chunk of cottonball that Dr. Finerman inserted into the right nostril, and maybe then I can return to a quiet nose-breather. So all you SNUC’ers out there may want to think about moving to Hawaii (good) or Houston (bad), but avoid Palm Springs and Sacramento. At least that is MY experience w/ head radiation. If you fellow SNUC ‘ers have a much different reaction, let me know.
And here’s a photo of a 54-year old SNUC’er almost 3 years after going through the meat grinder.
160 lbs. (the new normal – see pages on my eating habits) and not one who lays out in the sun. Arms are 100% Farmer’s Tan, but the head and neck less so. If I was more diligent the only tan would be the arms. FYI, that brown dot between my belly button and left nipple is the divot left from the gastrointestinal feeding tube back in the good ol’ days.