Mark's Blog

Exam News...

2007-01-18T20:28:00.000-08:00

First post-treatment exam today...
Dr. probed base of tongue with finger, found all normal feeling tissue, no tumor tissue. Then scoped the area and saw absolutely normal tissue. No sign of cancer at all. All the area looks good.
I may have to have a "functional dissection" of the left lymph area on the side of the neck, he's going to talk with a colleague at UCLA he's worked with for a number of years. This is a non-major surgery where they go in and do a base-of-tongue biopsy first, a pathologist examines the tissue in the OR, then if they find nothing on the original tumor site, they "strip out" the lymph system on one side of the neck. This ensures they get any microscopic cancer cells that may be in the lymph system. Because my secondary tumor was a lymph node at six centimeters, my Dr. feels that this procedure should be considered. I should know more about this in a week or so.
That's the news, pretty much all good.
Yea!
-mark

My Thanks to All of You

2006-12-28T19:18:00.000-08:00

My two oncologists and my nurse practitioner told me they have never had anyone go through this level of treatment with as much strength and health.

While it helps that I was fit and healthy, I believe that this was due to your love and support—your energy, prayers, and pure healing love.

This is a thank you note, really a love note, to all of you. Blessed Be.

Done!

2006-12-28T19:17:00.000-08:00

12-28-06

Well, I got it done. I finished my treatment with a second radiation session this afternoon, a talk with my oncologist, and out the door. Santa Barbara Cancer Center gave me my head mask and a cute little diploma.

Just a word about the staff at SB Cancer Center… Amazing! Everyone in the office and labs and treatment areas were as good as you can get. They are friendly, resourceful, helpful, compassionate—and completely professional. I rarely find a group of people who are so dedicated and yet so nice. It was a pleasure each day to go in to their office and get treatment (can you imagine looking forward to cancer treatment because of the people involved?)

Now I have to wait for ten to twelve weeks for my follow-up PET scan. The ‘old’ way was to perform a “functional neck dissection” which is stripping out the nodes from one side of my neck, but recent research data is pointing away from that procedure. Both of my oncologists are questioning the procedure, so we shall see. If I were to guess, unless something shows up in the scan, we will decide not to do further surgery.

The next step is simple: heal. I’ve got a terrible sore throat, just raw and painful from the top of the mouth down to way below the base of the tongue, deep in the pharynx toward the larynx. That’s hell, I’ve got to tell you, since the sores down there create secretions (nice word for nasty yellow gunk) that I have to cough up. Ugh. Sometimes it’s very difficult to do this little task without triggering the gag reflex and (sigh) Sudden Throw Up Syndrome (STUS—I just made that up.)

I expect it’ll be weeks before I can swallow again, let alone start to run. However, this last weekend was amazing. Shirley suggested we go for a walk on Sunday, an absolutely stunning day (sorry if you’re reading from where there’s Winter). We parked up across the street from Lazy Acres and walked down to the bottom of Shoreline Park and back. Wow. That was around two miles at a fairly brisk pace and while the last half mile was tough, I “finished”. You may laugh at that, but when we came around the corner by the Coast Guard lighthouse, I was looking for our car like I’ve looked for the finish line on tough runs. Ouch! Monday (Christmas) was, if possible, an even more a amazing day, so we went up to Nancy Gunzberg’s house and walked the hills from there. That was a tougher walk, again about two miles, but frankly too many hills. I was pretty much done in by the end…but it felt so good to walk with strength again!

One thing that’s enabling my healing is that I finally started taking pain meds. I take Roxicodone every few hours, just a few drops, but it’s enough to take the edge off the pain and allow me to sleep in the night, and with less, keep going during the day. This is a serious narcotic, so I’ll only be using it for another week or so, and I only use less than 5mg, about the lowest quantity. (By the way, this is the pain medication that Rush Limbaugh was (is?) addicted to and was busted for doctor shopping to obtain huge amounts of illicit meds.)

The Essay

2006-12-28T19:09:00.000-08:00

Here's the essay I wrote to try to win the car. The folks putting it on can be found at http://www.egac.net/. The theme was "On the Road to Survival, What Keeps Me Moving Forward". I didn't win the car, but I was in the "top five", and I met some lovely people.
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Living For Love

I was diagnosed with cancer of the throat on October 3, 2006 and am now two weeks from the completion of my treatment. It was devastating to discover that the lump removed from my neck was cancer and that the cancer was somewhere in my throat. I’m a non-smoker, non-drinker, a runner, and a health food nut. At fifty-four, is my life over?

Walking down the hallway at Pueblo Radiology, I came face-to-face with one of Lance Armstrong’s yellow jerseys from the Tour de France. Wow! Lance beat this. Cancer gave him not only a new way of living, but also a reason to live. Cancer showed Lance how to be strong.

I realized that I was alive, I was strong, and I can face my cancer with this strength and survive. But if strength is the engine of my surviving, what is the fuel? What makes me want to survive?

Over the next week I stepped back to the basics we all learn in our childhood: I decided to count my blessings.

In August, just as the original lump started growing, we dropped my daughter Angelika off in Indiana to attend her first year of college. She is so exited to be on her own, learning and growing and blossoming into a compassionate and independent adult. She calls or texts me every day during my treatment to let me know that she loves me.

My eight-year old daughter Jade almost beat me at chess the other night. She snuck up and took my queen and it was only by hard work on my part, and her lack of experience, that I managed to corner her king and save the game. But she’s tasted blood; I know it’s only a matter of time before she beats me. She’s discovered piano and loves it, and keeps the binoculars by the back window for the red-tail hawks behind our house. She helps me with my feeding tube and fetches things when I am in bed after chemo, always with a smile and a laugh, a kiss and a hug.

My wife Shirley, recovering from the initial shock of diagnosis, has become the strongest, most supportive partner I could ever desire. What she offers is beyond day-to-day support. Shirley loves me, without question, and I can feel her love. Unspoken, unremarked, her love is like sunlight in the air, tangible and live-giving.

I am surrounded by love. Pure love, unconditional love. It’s easy to use the words, but to actually feel unconditional love every moment of every day—it’s almost too much. In fact, one of my main challenges has been to learn to receive. From my family, from my loving friends and my dedicated employees, from my doctors and caregivers, love seems to stream over and through me during my treatment, giving me strength, hope, and life. Every day, this love nurtures me, supports me, and allows me to face my challenges and to live—strongly—into the future.

2006-12-28T19:04:00.000-08:00

2006-12-28T19:01:00.000-08:00

A Rough Week, but Nearly Done

2006-12-19T04:11:00.000-08:00

12-18-06

Short update this week. This chemo is nasty stuff and I was sick a lot of the week. Just off. As I mentioned, the chemo drug messes with my DNA and I feel sick, fuzzy, stupid, and completely ‘off’. It’s challenging.

On top of the chemo sickness, my throat is raw and sore from the radiation so I have a weird system of feedback between coughing gunk up from deep in my throat, stimulating the gag reflex, and hitting the urge to throw up that the chemo brings. Not a positive feedback loop let me tell you.

BUT when you are busy feeling sorry for yourself, the Universe will sometimes slap you up the side of your head. This week was the presentation for cancer survivor essay contest at a German car repair place in Carp. I wrote a nice little essay and went to see if I got to drive home in a late-model Mercedes. My essay was read fifth out of 30-some, and I was pleased to hear it read from someone else. But while waiting in the cold I met a family from Santa Maria—a young man of eighteen who had an appointment to attend the fire academy and join the SB Co fire department, but turned up with leukemia during the summer. This young man has been through a system-wide treatment regime for five months now, totally bald, skinny as a rail, with a big smile on his beautiful face. I got that while my treatment isn’t fun, it’s a world better than some. I knew this from talking and remembering Nancy’s treatment a few years back, but to meet this brave man…

I have only one more chemo treatment left, Tuesday, so I’ll be out of action through about Thursday. I have begun twice-a-day radiation until the last day, December 28. The radiotherapy has increased about 20% and is point-focused on the specific tumor area. And it hurts. Still, we’re on the homeward stretch here, so I can grit it out.

The Gnarly Details

2006-12-10T18:55:00.000-08:00

The Gnarly Details
12-10-06

This week was more of the same…more radiation therapy, more chemo, more taking care of myself by resting and using the feeding tube…constantly. You read about the tube in last week’s missive; this week I’ll regale you with the details about the treatment.

We had two deliveries of food this week, thank you all. I can’t eat what you bring, but it really helps us with the number of things we need to do during the week. You are all so kind and loving, I only wish there was more we need. We’re doing really well here, and I am so thankful that pain and incapacity haven’t thrown me farther off my “normal” pace. I have to manage the feeding tube and (as I’ll mention later) sleep a lot, so that’s a little harder on Shirley, but I drive myself to treatment and take care of most of what I need without help.

Now here’s a rundown on my treatment:

Radiation therapy has come a long way in the last decade. I am undergoing something called Intensity-Modulated Radiation Therapy, or IMRT. From an informative introduction site on the web:

Intensity-modulated radiation therapy (IMRT) is an advanced mode of high-precision radiotherapy that utilizes computer-controlled x-ray accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor. The radiation dose is designed to conform to the three-dimensional (3-D) shape of the tumor by modulating—or controlling—the intensity of the radiation beam to focus a higher radiation dose to the tumor while minimizing radiation exposure to surrounding normal tissues. Treatment is carefully planned by using 3-D computed tomography (CT) images of the patient in conjunction with computerized dose calculations to determine the dose intensity pattern that will best conform to the tumor shape. Typically, combinations of several intensity-modulated fields coming from different beam directions produce a custom tailored radiation dose that maximizes tumor dose while also protecting adjacent normal tissues.
Because the ratio of normal tissue dose to tumor dose is reduced to a minimum with the IMRT approach, higher and more effective radiation doses can safely be delivered to tumors with fewer side effects compared with conventional radiotherapy techniques. IMRT also has the potential to reduce treatment toxicity, even when doses are not increased.

When I first went in to get my PET scan (similar to a CT scan), you lie on your back and are moved into a huge doughnut scanning machine. From the same radiology site:

Positron emission tomography, also called PET imaging or a PET scan, is a diagnostic examination that involves the acquisition of physiologic images based on the detection of radiation from the emission of positrons. Positrons are tiny particles emitted from a radioactive substance administered to the patient. The subsequent images of the human body developed with this technique are used to evaluate a variety of diseases.

Before the radiologists performed the scan, one of them put a hot mask over my face, anchoring it down all around the back of my head, holding my face tight against the table and neck cradle. As the mask cooled, it solidified into a firm mask the shape of my face. Other than the surprise factor (they could have told me what they were doing!) I realized that this mask was to hold my head back and immobile during treatment.

So when I go in every morning at 8:30, the radiology techs put me on the table, anchor my head with the mask, and line me up with the laser lines emitting from the linear accelerator head. The “head”, a stainless-and-glass round object about a meter in diameter on a long arm, is positioned by computerized control to an angle in regard to my throat. I get a total of eight treatment positions, ranging from what I estimate is about 270 degrees around my neck, from below me and to the right to the same position on the left. Each time a position is used, a relay clicks behind my head and I can hear the accelerator activate and deliver the radiation: a loud rasping buzz. With each dose, I can hear what sounds like metal leaves, almost like an old-school film camera, moving in the accelerator head. What I’ve found is that IMRT “also involves dynamic multi-leaf collimators (DMLCs), computer-controlled devices that use up to 120 movable “leaves” to conform the radiation beam to the shape of the tumor from any angle, while protecting normal adjacent tissue as much as possible.”

The whole treatment is according to a 3D design my radiation oncologist, Dr. Lindsay Blount, created for my specific tumor and health.

While the treatment is designed to minimize the impact on surrounding healthy tissues, I am feeling some significant pain and, well, my throat just doesn’t work right. I don’t have enough pain to require taking any pain meds, thank goodness, but it’s uncomfortable and nasty at times.

My chemo uses Cisplatin, the granddaddy of all cancer drugs. You can find information on the drug at http://en.wikipedia.org/wiki/Cisplatin. What happens is every Tuesday morning I sit in a lounger and get an IV for two + hours. When I leave I feel weaker and a bit pale, but OK. I actually process the drug over the next hour or two via kidney, and it’s gone by that afternoon. But in the meantime, it’s messed with my cellular DNA and prevented rapid mitosis, or the rapid dividing of cells. This is what cancer is, so cisplatin effectively stops cellular division at the tumor site.

Of course, as you might imagine, it makes me sick. I gobble anti-nausea pills for three days, and mostly sleep. My brain feels fuzzy and I have almost no interest in anything, even politics if you can believe it, until pretty much Friday. Then my body and mind come back and I have a nice weekend. I work all day Monday getting the business lined up for the coming week, then it’s back into the lounger on Tuesday for another body-slamming IV. Ugh. But I’ve been through five weeks of it, and I think we are set up for seven. Almost done…

The Return of the Feeding Tube!

2006-12-03T20:55:00.000-08:00

The Return of the Feeding Tube!

(Cue the organ)

3 December 2006

OK, so long about mid-week I realized that I was starving myself. Damn, I hate it when that happens.

I can’t taste any food (I have a residual kind of a ever-so-slight-taste, like the distant sound of Fiesta bands down at El Mercado del Norte late at night in August—it’s four miles away but I can hear the faint sound of guitars and drums). I can’t swallow anything in sufficient volume to make an impact on my nutrition requirements. And it’s not just that I’m losing weight, it’s that for three or four days after I get chemo, if I allow myself to get “empty” in my stomach, I am find that I am more likely to get sick. Ugh.

So, facing the feeding tube as a matter of both health and comfort, I begun.

And you know what? It’s kinda’ fun! I mean, the whole load-giant-syringe-and-shove-into-tube thing is not fun, nor is the extensive ritual of prep and cleanup, but the creative effort to figure out food and nutritional combinations—as well as texture and thickness—can be enjoyable. Like that first inorganic chemistry class—once you ‘got’ the skill of following lab directions, it was pretty fun to make the solution turn pink.

So I’m always thinking in the back of my mind: what can I liquefy that would work for my body and still go through The Tube?

Who said cancer treatment wouldn’t be creative?

This morning I cooked up a combo dish of quinoa and amaranth grains, threw a couple of wooden spoonfuls of the mush into the blender with some of Jody and Doug’s honey, some Metabol endurance athlete formula, several tablespoons of almond butter, and a generous helping of apple juice. From lunch I whipped up some cooked grains, spinach and dark barley miso. Last night I used spinach and pinto beans. This evening I tried Terri Thomas’ pumpkin soup and fresh steamed broccoli. The possibilities are limitless!

Basically, if it liquefies, I can use it. What this means is FREEDOM! Freedom from every-meal-a-corn-sweetener-based-milkshake, freedom from wasting away, and freedom from throwing up with nothing in there (which, I have to tell you, sucks.)

This week I also figured out a little better how to arrange my time. I worked hard on Monday, got the week ahead planned and my week’s invoices written, got the money situated, and left exhausted by five. Tuesday and Wednesday I stayed home, chemo-sick and sleeping. Thursday I went in for a couple of hours in the afternoon to take care of paperwork, banking, checks and bills. Friday is optional. This feels so good compared to forcing myself to be at work at all times, and my great employees are taking care of almost everything just fine.

There’s not much else to relate, except a fun little aberration in my life this weekend. Shirley and Jade went to LegoLand to support the Home Base Lego team, so I was home alone on Saturday. On a whim I tuned into the USC/UCLA game, the first football (not futbol) I’d watched in at least two decades. Ah, what a defense!

Speaking of food...

2006-11-26T20:40:00.001-08:00

11-27-06
Hey I thought about my food and throat all day. I tried a nut loaf sandwich and that didn't work. Ended up with another bloody shake for lunch.
Then about 5 I had a flash of inspiration: spinach blend. I threw some frozen spinach in the blender, grabbed a nice chunk of tofu and threw that in, added some water and hit "hi". As it liquefied I poured a glob of soy sauce in to make it taste like, well, like something other than spinach and tofu, I guess.
Nuked it for four minutes.
Sipped. Ah, it works.
Then take some whole wheat Nan bread from TJ's, break it up into little tiny bits, soak it, and take it by the spoonful.
Ah. Healthy food at last!
Followed by two slices of pumpkin pie and three big spoonfuls of vanilla ice cream. Calories, ya' know.

Mark's Thanksgiving Missive 11-26-04

2006-11-26T18:25:00.000-08:00

Mark’s Thanksgiving Missive

11-26-04

Hello to all of you and Happy Thanksgiving!

This is the third week of treatment. I now have three chemo sessions and thirteen radiation sessions under my collar. And, as every cancer survivor and oncologist will tell you, this was the week the honeymoon was suddenly over…I had run last Saturday four miles fairly strongly, then on Sunday gone to the gym for my weights and another three miles. No more.

In short, this week’s chemo hit me pretty hard. I ended up taking a number of anti-nausea pills, sleeping an amazing amount of time, and feeling like my body was not-so-subtly poisoned. I love being healthy and feeling ‘clean’, and this feeling of having the chemo in my body was just plain weird. I felt sick for the first time and I didn’t like it at all. I thought all the good thoughts about how this chemo was curing me, how the chemical was killing the cancer, and bottom line, it felt like I’d willingly ingested some sort of nasty poisonous substance. Uck!

By Thursday afternoon I felt somewhat better, and by Saturday I can say I actually felt almost all of it flushed out of my system. What a relief! (Until this coming Tuesday for another round…but we’ll take it as it comes, right?)

Meanwhile, the radiation is laying daily fire into my throat. Many areas of my throat region feel burned and hurt, some raw and painful. Swallowing became a real challenge early in the week, and Thanksgiving dinner was a slow, painful effort. I did have two helpings of mashed potatoes and nutloaf, but it took a good long while. No wine.

By Thursday evening I was reluctantly admitting that my caloric intake was much lower than my caloric output…and I was beginning to lose weight. Damn, I’m not supposed to do that! So…I took a deep breath and fired up the feeding tube. I used a bottle of Ensure and the tube late at night so I was alone to figure everything out. I don’t like the ingredients on the side of the Ensure bottle, so the next two times I made a shake from various athletic drink powders we have, like Metabol and designer protein, add some yogurt as a base making it nice and smooth with a bit of additional calories—and calories are everything in this form of higher math.

But, just when I was giving into The Tube As A Way Of Life, I discovered that the liquid pain reliever, UlcerEase, intended for throat sores, could be gargled and would allow me to feel OK enough to swallow. So a simple omelet or a bowl of very creamy oatmeal could be once again “taken by mouth.” Hurray!

On top of all this detail, which you really don’t want to know, is the, um, spit factor. See, when you irradiate the throat you cause all the defensive mechanisms to react—which means you start producing copious amounts of phlegm and spit. And it’s thick because the glands and tissues that make it are also wounded. Which means, well, mass quantities of Kleenex tissues and a lot of coughing and throat clearing. It’s ugly, and I realize that for you, gentle reader, it’s also far too much information. However, this is my life at the moment, so there it is.

In my non-cancer world, Angelika was here for a wonderful, sunny, warm, loving week. She loves her college and is growing and maturing so much…She’s hurting to leave home again, but she’ll be back soon and I have a hunch I’ll need her around.

Jade worries about my cough, but she just loves me like some kind of ultimate teddy bear come to life. She almost beat me at chess this last week, sneaking up and taking my queen if you can believe it, and it was only by some serious playing on my part—and lack of experience on hers—that I was able to finally corner her king and save the thing. I know the day of my first loss is close on the horizon…

Shirley was a wonder woman this week, getting Angelika reentered into our lives, getting Jade here-and-there, shopping and cooking for Thanksgiving, taking care of me when I was sick and loving me all the time—and still getting time for herself. All this while fighting a nasty cold. Whew! And she’s doing all this with such Grace…

That’s it for this week. We send you much love and tremendous thanks for your support.

Love,

-mark

Mark's Update, Week One, 11-12-06

2006-11-26T18:24:00.000-08:00

Mark’s Update, Week One…

11-12-06

I’m going to try to send updates on a weekly basis… This week was a crazed E-ticket ride from wonderful relief to exhausted frustration. It’s all good, but damn, what a week!

The great news was we finally got started with treatment. Some of you know the story, but here it is in a nutshell:

The local docs here in Santa Barbara recommended a treatment protocol for the tumor at the base of my tongue, and I went to get a second opinion at the Head and Throat Center at UCLA Medical Center. After undergoing what was a nasty couple of appointments at UCLA, where doctors and residents were rude, disconnected, and the care was harsh with disregard to my feelings as a patient, I was told that this was a serious cancer (which we knew) and was best treated with a radical and major surgery that would initially cut out most of the base of my tongue, reconstruct it with forearm muscle, and follow up after surgical healing with radio-chemo. This shocking news was given to Shirley and me—after a long day of waiting and being poked and prodded—in a small examination room, with the door wide open and the exam rooms on either side of us containing other patients waiting for their treatment recommendation. Further, the UCLA team told us the pathology from Santa Barbara was wrong and the treatment recommendation was incorrect.

We drove home in shock, anger, and a sense of foreboding loss, yet with a commitment to do this if it was right—but a huge question: was this recommendation correct?

My Santa Barbara team was also shocked by this news, and begun two days of lab, phone, and meeting activities that turned out to span the country as my docs tried to understand the recommendation and the details from UCLA. First of all, the pathology report was reexamined here in Santa Barbara: new slides were cut and examined, the pathologists all reviewed the slides, and an offer was made to send the slides to Stanford or some other independent pathology lab. The clear answer was that the original pathology report on the tumor was correct, the UCLA report was not only incorrect but would be a very rare and exceptional situation if true, and the third lab could confirm this if we wanted that level of detail. I was mollified; I believed the local lab.

The local oncologists I am working with, along with my Ear Nose & Throat doc, all conversed as to the recommended treatment regime. My radiation oncologist called the director of radiation oncology at U of Florida, who has done breakthrough treatment work along with Duke. He heard my case and confirmed that that the UCLA surgery-first treatment was “old school” and the radio-chemo therapy recommended by Santa Barbara was effective, cutting-edge, and most likely to cure my cancer while preserving my quality of life. Without getting into the radiologist vs. surgeon smackdown, it appeared to be clear that just because UCLA does three of these major procedures a week didn’t mean it was the best way to go. As my local doc said, the morbidity in this type of surgery is extreme, and I could very well end up without the ability to swallow or talk, with a tracheotomy and a feeding tube for the rest of my life. Why go there if we can immediately treat this with radiation and chemo and hold radical surgery “in the bank”?

With all this information, we took a deep breath and chose to start the radio-chemo therapy right away. I did my last (for this year) five-mile run on Sunday, 11-5, and we made our decision on Monday morning at 8am. I started the treatment with both chemo (Cisplatin) and radiation (seven weeks of treatment, including hyper-fractionated treatments the last two weeks) on Tuesday. It’s a lot of radiation to a very defined area and I have been told that my throat and tongue will be so sore through the second half of the treatment that I will be unable to swallow effectively. A feeding tube was recommended, and it was urged that I have it put in now, while I was strong and healthy and my throat was not overly sore. Sigh.

Now one thing I have no desire to do is go into Cottage Hospital and lie on an op table, get a load of Demerol by IV and have a hole punched into my stomach and abdominal wall. Ouch! But…the docs said this would be best—and it would be best now—so I went to Cottage at 6:30 Thursday morning. It was just as fun as you might imagine. Here’s what I wrote about that experience on Friday night:

The tube insertion was just a frigging barrel of monkeys. I mean, first they lost me (I wasn't where they thought I was supposed to be but instead up in the room Cottage admissions put me), then they couldn't get Cottage pharmacy to get the antibiotic over to the GI lab, and then the second doctor scheduled to work with Dr. Bentley was stuck somewhere doing a sudden gig on someone else. I lay there for an hour waiting in nervous anticipation and ended up getting up from the op table twice to pee so I wouldn't lose it on the table. Sheesh.

AND THEN they used a heavy dose of Demerol to sedate me for the procedure. When I got back to the room I was stoned to the gills. I lay there for hours and hours in pain and feeling just completely trashed until finally, after 8pm, and after asking over and over, some nurse finds the machine and the ensure-like cans and comes in and starts food into my tube. That's over 24 hours without food and I'm trying to recover from both the Demerol and the stomach wound. I felt completely different within about six minutes of getting the tube going with some nutrition.

Friday morning they gave me the usual "I don't know if we can release you that early" garbage, but I sort-of put my foot down and suddenly the mountain of paperwork they told me about became a single sheet of paper with one cryptic sentence. Hospital humor, I guess.

Now my tummy hurts and I'm trying to eat well and I've been sleeping a lot. But I've pretty much got my humor thing going again, so...All’s well, right? And to tell you the truth, I don't know how this could have been done in a few weeks when my throat is super sore.

Now with the weekend to recover from the feeding tube procedure and the first week of radio-chemo, I am looking foreword to the next six weeks of therapy. I will be finished, according to our schedule, on December 28.

Angelika comes home for Thanksgiving this week, on the seventeenth. We are all so excited to have her home for the holiday. Jade has been my fetch-and-carry girl when I am lying around with a cramping stomach.

And Shirley, well, I can’t even begin to relate how incredible her support and love has been through this process. She’s walked this path of diagnosis, recommendation, re-diagnosis and re-recommendation, decision, and now treatment; every step of the way as my true partner, full of love and holding my hand to give me strength. She’s got her tears and her fears and not a little bit of anger and resentment, and somehow she’s found a way to be amazingly supportive of my process as well. It’s a wonder. When we were waiting around at UCLA with seven other patients we got to see the level of mutual support in the other couples, and with the exception of a lovely gay couple from Vegas, there really wasn’t any. Shirley was with me all the way, helping me by holding and touching, talking lovingly with me about realities, options, and emotional feelings. We cared for each other. I’m very lucky.

I want to thank you all for the good thoughts, prayers, and energy you have sent us, as well as the offers of help and support, the cards, the rides for Jade; your outpouring of love and support is incredible and almost overwhelming. Our situation at this moment is almost “normal” (whatever that is), but as my treatment progresses there will come times when we will require more help. We will let you know, either directly or via our friend Nancy Friedland, when we need more assistance.

First Update, 10-18-06

2006-11-26T18:22:00.000-08:00

Hello Dear Friends,

As you might have heard through our network, I’ve (Mark) somehow turned up with throat cancer. I wanted to tell you all about our situation, reassure and inform you with facts and realities, and then tell you a bit about our emotional process and future needs.

In August, as we left to meet Angelika in Indiana to move her into her dorm at Earlham College, I found a new lump on the left side of my neck in an upper cervical lymph node. When we returned I saw an ear, nose, and throat specialist of high regard and he did a needle biopsy, followed by another a couple of weeks later. Both were negative, but two weeks ago we moved quickly to surgery to remove the mass, whatever it was. That biopsy revealed a non-differentiated squamous cell carcinoma.

When a mass appears in place of a lymph node, this almost always means there’s a “primary” cancer somewhere in the area that lymph node drains. Latter that week a CT scan revealed a mass in the hypopharynx, above the esophagus and below the oropharynx. You’ll have to run to Google to get a diagram, but it’s in the part of the throat where you manage your breathing and swallowing, below the base of the tongue.

I went back under general anesthesia last Friday and my doc used an endoscope to further observe the mass and the area, and to snip off a few samples for biopsy. The results were the same. We’ve been to an oncologist/internist this week to consult on treatment options, and we are heading for UCLA medical center Thursday for further consultation.

At the moment, the medical experience is that this kind of carcinoma is very responsive to treatment: specifically directed, localized radiation, in combination with limited platinum-based chemo. The radiotherapy will most likely begin the first week of November. This is going to be difficult as it involves making my throat so sore I will not be able to swallow for weeks. I will probably have a feeding tube for two or three months. No chocolate espresso pie, I guess…

OK, enough of the factual aspects.

We are all in shock, modified by doing lots of stuff that needs doing. Yes, we are at the same time doing pretty well, but this is a blow to us for sure. Geka is scared, sad, lonely, and so very brave, staying in Indiana and calling me twice a day just to connect. While this is very hard on her—especially over 1700 miles—she loves Earlham; it fits her very well. Jade is rolling along with us, being her delightful and joyful self, blessing us each day with her love and spirit. She’s worried but she’s also so strong for a little one.

Shirley and I have been on an emotional roller coaster for the last three weeks. We are finding our love and our care for each other to be suddenly more vital and important—and precious. We are working on this together as well as in our individual process.

(As for me---well, I just don't get it, ya' know? I was running 20+ miles a week up until three weeks ago, eating my usual wonderful mix of green and earthy foods, and generally being happy and healthy. But the docs are saying they are seeing a more cancers like this, in healthy people. It's pushing the research. The bottom line is there are no answers, just crank the treatment out and be SO thankful for my healthy body that can take it and come out the other side. I'm looking at this as another physical and emotional challenge that I train for and work hard at, and when I eventually finish the treatment I'll know that I not only did my best, and---in my own way---won. I don't *like* this feeling of being out of control and knowing I'm going to be hurting, but...with love all around me, I feel I can do it.)

We will let you know as we work on the process of treating and beating this thing, and as we need some special help, we will ask—or a friend will ask for us.

We send you love and thank you for your support.

Mark and Shirley