Only ONE Memorial-- Sunday May 23

There seems to be continuing confusion on the Memorial. The only memorial taking place is on Sunday May 23, as per Cecily's post. Sorry for the erroneous information prior to that.

Memorial @ Roblar 5/23, 5pm

Paul's Memorial will be held at Roblar Winery on Sunday May 23rd at 5pm



In this supportive little online community, it's easy to forget that this blog is veiwable by the public. But this will be a private event. If you haven't recieved an invitation by the 15th and you believe it is an ommision, please email your info to PaulGmemorial@gmail.com. I know that some of you reading this don't know Paul personally, but would like to memorialize him. Your support and condolences are greatly appreciated, but please, no uninvited attendees. Sorry about the confusion. I look forward to getting together to celebrate Paul!

Getting a head count

First of all, thank you for your condolences and wishes. We are surrounded by love from Paul's many friends...

As we organize the gathering for May 22, it would be helpful to know the approximate number of people that will be attending. Obviously, this will only capture the blog following, but at least we'll get an idea. Please send an e-mail to paulgmemorial@gmail.com, and let us know how many of you are coming. If you know of others who won't see this post but want to come, please forward the e-mail address to them or respond for them. We would like to have this information by May 15 so we can make the logistical arrangements.

If you need directions to the ranch, just indicate such in your e-mail and a map will be sent to you a few days prior to the Memorial. The general area is Santa Ynez/ Solvang/ Buellton if you are coming from a distance.

Remembering Paul

The Memorial gathering for Paul will be on Saturday, May 22 at 11:00 a.m. at his ranch, Rancho Sonador. As I said in the previous post, it will be very informal with some refreshments and a chance to share our thoughts and stories.

Regarding your comments to my last 2 posts: unfortunately, no one knows Paul's password, so we cannot publish your comments at the bottom of each entry. (No matter who writes the post, all the comments have to be approved by the blogger). We can, however, read and print them. So please feel free to make comments in the usual way--we will receive and appreciate them. The e-mail account associated with the blog will be closed in a few weeks, however, so if you want to comment please do so before then. Thank you all...

Finally free...

It is with deep sadness that I inform you that Paul passed away Thursday afternoon at approximately 4:00 pm. He went peacefully while surrounded by his loving but heartbroken family. I know I speak for all of us when I say thank you for all of the love and support that we've received through this blog (and otherwise) for the past 2 years. It became evident long ago that Paul has a large circle of caring friends that loved him to the end and will always remember him.

We have many things to tend to now, but Paul requested a Memorial gathering to be held at the ranch. I will post the date and time when we make that decision. It will be an informal celebration with food, wine, and an opportunity for people to share stories if they wish.

We're not sure at this point if we can access your comments to these last 2 posts. If we can't I'll let you know, and give you another point of contact to express your thoughts. Your comments have always given us strength and encouragement...

A Quick Update

We wanted to bring you up to date on the latest... Paul was taken to the emergency room late Sunday night because of difficulty breathing. He was eventually admitted, and is receiving palliative care at this time. His family is either already here or enroute. We know you are all out there, and we can feel your love and support. We respectfully request no visits or phone calls, as the best thing for Paul now is peaceful rest. We will keep you informed...

Keyboard skills.

I learned to type in the 9th grade. Two-handed. Fast. But with the loss of function in my left hand and arm I am relegated to one-handed typing . . . slow and frustrating. Thirty-seven years of experience down the drain. So these various posts not only come to you through the fog of opiates and uncertainty, they are now wrought via unsophisticated technique. Oh well . . . c’est la vie.

Latest on the medical front is that the doctors now seem to feel that the numbness that I’ve been experiencing in my lower left jaw is tumor related rather than a benign cyst as originally diagnosed. And yep, that means that their recommendation is for 14 courses of radiation to my jaw . . . sound familiar? I’ve requested a needle biopsy first, however, as my prior experience with radiation therapy left a lot to be desired. Three spinal surgeries and 14 courses of radiation to my spine have left my central nervous system in total disarray. I awaken every morning to a back that buzzes so hard I can almost hear it. I’ve finally acknowledged that this is a form of pain and am trying to identify a pain killer that will adequately address it.

And in the midst of everything else, it is clear that my reduced work capacity means that I can no longer afford to pay the mortgage on the ranch. I’ve briefly looked at using the property for the formation of a non-profit foundation that would be of assistance to patients suffering from Stage 4 cancer and/or spinal cord injuries as a means of raising funds to bridge the mortgage gap but am not optimistic that such can be accomplished. So the most expedient approach would appear to be listing the property for sale, albeit in a dismal real estate market. C’est la vie. So if any of you are in the market for a premium wine-country property, or know of somebody who is, please let me know!

In the meantime, we continue to stumble down this strange and winding road.

Taking Assessment.

It’s been a wild ride. And then some.

Discharge from the rehabilitation facility occurred March 30. It’s nice to be back home again. The prior 115 days introduced life changes that border on nightmarish, including the following:

Three spinal cord surgeries;
Fourteen treatments of radiation therapy to my spine;
Radiation therapy-induced case of the shingles;
Bladder infections;
Blood infections;
Loss of function in both legs and my left arm & hand;

Did I say “border” on nightmarish? And yet the team soldiers on, led of course by Cecily. There have been many occasions where I’ve run out of gas. But she perseveres. My family has also been a tremendous help and source of strength, but this is rough on all of us.

I am also very appreciative of the efforts that friends have made to remind me of their support, and I regret that my pride precludes me from wanting to be seen in my present helpless condition. I also regret that I am unable at this time to return phone calls, emails, etc., as I am overwhelmed by the amount of work that lies ahead and am only now recovering from the various infections that have wiped me out. But I will make progress in these areas also.

All done . . .

. . . with radiation treatment. Can’t say that I’m gonna miss it much. Yep, that’s me in the photo doing my best Hannibal Lector impersonation as they position me for nuking. Needless to say, I found just about everything associated with this process distasteful.

Next up is a two- to four-week break and then the resumption of chemotherapy in one form or another. None of the medical doctors have contributed anything of interest in this regard, so once again, just like a year ago, the most current, accurate, and compelling information along these lines is being collected on my behalf by a real estate broker (Cecily). Go figure. Oh well, it may be an unusual journey I’m on, but a journey nonetheless.

Some of you have mentioned that my journey is an inspiration. While I am certainly pleased if others have found motivational value in my story, I continue to be inspired by a number of individuals I meet on an almost daily basis, ranging from patients to nurses. It seems as though there is always somebody whose story trumps all others. And just when you think you’ve heard it all, you can always consider the trials and tribulations of quadriplegic orphans in Bangladesh. It doesn’t get much worse than that and makes my journey sound like that of an emperor. And who does the worst of the worst in Bangladesh turn to for solace? My guess is that they may be blessed with a positive countenance of which you and I can only imagine . . .

Delays, delays, delays.

It’s been several days since I intended to post to the blog but I’ve been wiped out by the radiation therapy I’m undergoing. I’ve now completed eight treatments out of a planned fourteen and let’s just say that nuking my spine is kicking my butt – I wonder if they teach that anatomical relationship in medical school.

Anyway, my last posting related to a poem I wrote for my son Taylor on the eve of his birth. That post prompted a few kind compliments (thank you Kay, Deanna, Karen, & Imelda) and a poem from an anonymous poet. But most remarkable was the realization that this poem I wrote almost two decades ago finally met its muse! For those of you that read the blog but not the comments, please see Taylor’s comment from the prior post. I guess I just took it for granted that he knew that this humble little poem hanging on his bedroom wall all those years was written for him, but then again – when would he have been told? Probably before it would have been meaningful to him. So yet another example of how some of the bigger pieces of life slip through the smallest of cracks.

Since my latest posting we also thoroughly enjoyed a visit from my oldest son Brandon. Brandon took a few days off from his first-year of law school (where he is at the top of his class) to shoot the breeze on just about every subject under the sun. Those that know Brandon will have some inkling of an idea what I’m talking about. Those that don’t will . . . well, just have to wait for the national media to catch up with him.

Cobwebbed poetry.

For some reason, a poem I wrote many moons ago has wrestled its way to the forefront of my consciousness, dragging broken cobwebs along with it. It was written more than eighteen years ago on the eve of the birth of my second son, about one year before the discovery of my first tumor. I’m not saying it’s good or bad – it simply is what it is: heartfelt sentiments expressed by an amateur in celebration of a momentous occasion, and I'd like to share it with you.

The torch of life is passed
The spark for each new day,
From the depths of history’s darkness
To brighten future’s way.

We honor those before us
By shining in their glow,
Illuminating others
Our privilege to know.

The ticking of eternity
Measures out our chance to be,
A time to live and love
Until our souls are free.

So carry the fire proudly
Until your song is sung,
Be ever bold and strong
Burn brightly little one.

These legs.

My legs appear to be disinterested in whatever my brain asks of them. No movement. No sensation. Not even a good-natured “screw you”. Just complete indifference. I might as well be commanding responses from the legs of the patient in the room next to me or of a squirrel in Peoria.

I’ve also lost motor control of and sensation in my left hand. Taken together, this technically renders me a quadriplegic. Personally, I think of myself as more of a 2.5-plegic but I guess there is no such rating scale outside of Paul’s head, so quad it is.

The doctor’s ran another MRI scan after radiation treatment #3 yesterday in an effort to determine why the sudden loss of sensation after treatment #2. Not surprisingly, a definitive explanation was not obtained. The doc’s seem to interpret this as good news, however, as the tumor is apparently well behaved and there is no indication of further cord compression – suggesting to them that the recent setback may be reversible. We shall see . . . one day at a time.

Cec continues to remind me that we are dealing with two distinct issues here: c***** and spinal cord injury (SCI). I’ve got to do everything to fight the former (i.e., blasting with radiation) and then address the latter with the many emerging technologies that are rapidly entering the marketplace. Nevertheless, it’s difficult to be connected to a pair of legs that would seemingly prefer to be somewhere else. But I will continue to coax them back somehow . . . perhaps with the promise of grape stomping . . .

Round 2

Paul's first radiation treatment went well yesterday. He just recieved his second of a planned of 14 treatments, administered at 3:30pm over consecutive weekdays. The effects of radiation therapy can take weeks manifest, so there's not much new info to report. Just 'so far, so good.'

Circle of Spiritual Support for Paul

The outpouring of love and support for Paul, as he's dealing with all of this, is truly uplifting! It is a testament to what a magnificent person he is. I'm sure some people have already formed Prayer Cirles or other types of organized meditations, as I have with my Sister-In-Law, Aunts and close friends. Though some of us are in different time zones, we've been coordinating our prayers at particular times of day, and when Paul is undergoing a procedure or treatment.

Paul will recieve his first ever Radiation Therapy session today at 2pm. I don't know how long the treatment itself will last, but I'll be fasting and visualizing the RADS shrinking all the malignant tissue away to nothing! So please join me, if you can, in praying, chanting, meditating, visualizing, candle-lighting, Tong Ren tapping- or whatever you do- for Paul's successful treatment and recovery!

Thank you all very much!

It’s been fifty years . . .

. . . since I last wore a diaper. When worn by someone my age, euphemistic format now modifies the name of this undergarment to “brief”, and I hope and expect that my dependency will be just that: brief.

Nevertheless, this revelation will hopefully provide you with some understanding of life at the moment: total dependency on others for the most basic of human needs. My legs are not functional but still have sensation – I’m told that is positive indicator regarding potential improvement. I have lost control of my left hand so keyboard entry is a struggle.

After many false starts I was finally transferred to a rehabilitation facility last week. That means a minimum of three hours of physical therapy each day. The pain has been so intense at times it has made me cry. But the pain meds have been adjusted and it appears that we have finally identified a cocktail of compounds that satisfactorily addresses the various issues which are 1.) surgical pain resulting from the dismantling and titanium rebuild of twelve vertebrae (C4 to T8); 2.) bone pain related to spinal tumors that could not be resected during the surgeries; and 3.) nerve pain caused by tumor impingement on nerves outside and adjacent to the spine.

Radiation therapy to the spine is scheduled for this week. We are told that this is an effective way to knock down remaining tumor activity, so hopefully we will see improvements relating to functionality and pain. This procedure will round out my participation in all three treatment modalities that modern medicine has to offer people like me: surgery, chemotherapy, and radiation therapy. And through it all I have somehow managed to generally maintain normal vital signs and blood test results.

I once again need to express my appreciation for the love and support that family and friends have shown. Thank you Mom and Dad, Jan, Karen and Tracey, Taylor, Karin and Brian, Laura and Gary, and Beverly for your visits. Thanks to non-family for your love and support and for understanding that I am not yet up for additional visitors at this time but look forward to when that may change. And of course, to Cecily who has not left my side during this latest ordeal – she is a constant source of strength, optimism, determination, and unconditional love.

Don’t try this at home.

It has been eight days since my third spinal surgery. A neck brace restricts movement to that authorized by my surgeon, who apparently would prefer that I be catatonic at this juncture. I watch raindrops etch their slow but deliberate paths down the windowpane. Every two hours, rain or shine, day and night, I am rotated to prevent the formation of bedsores. Drugs are injected and inserted in every conceivable pathway and manner. There seems to be a good reason for all these compounds but I have lost track. The chemicals of primary interest to me are the pain meds. I track these closely, not wanting to be cheated out of a single dose.

The searing boredom of this existence is punctuated by intervention from the best medical care available anywhere in the world. Delivered by a team of compassionate providers. I am indeed fortunate to have access to such healthcare and reiterate my gratitude to those who helped facilitate it. I am also indebted to a large network of friends and family who continue to support and encourage me to maintain a level of strength and commitment that I would not be capable of achieving on my own. Your participation in my journey, great and small, has been a critical component of whatever it is that I may become.

I expect to be transferred back to SB in a few days for focused rehabilitation. Until then, the raindrops continue to weave their tortuous paths . . .

Surgery Completed Successfully

Sorry for the delay in posting - it's hard to keep track of night & day in here. Once again, Paul has come through the procedure well. The surgeon was aggressive, got out alot of tumor and installed a good amount of hardware. There will be radiation and / or chemo in the future, but for now just rest & rehab.

Thank you all!

More later.

Just a quick update -

Paul is having surgery today, performed by a most exceptional surgeon at one of the best hospitals in the world, at 1:15pm Pacific time. We are confident and optimistic and appreciative of all of your well-wishes and prayers. I will update in more detail later today.

Lost in the shuffle . . .

. . . of dealing with the recent unexpected spinal cord compressive events (and their terrible manifestations) is how well the experimental chemotherapy has continued to control the tumors that have been tracked for the past year via CT scans. I’ve previously tried to illustrate progress via graphs of linear and volumetric dimensions, but I’ll keep it simple here, namely how much lineal shrinkage has occurred versus weeks of chemotherapy. Linear dimension metric for each CT evaluation is calculated as the sum of the largest dimension (mm) of each tumor.


Scan Lung Abdom. Spinae Gluteus Sum of LD Decrease Weeks
1/21/09 39 36 214 141 63 51 130 55 446 ---
2/6/09 31 31 228 127 54 122 53 435 2% 2
4/9/09 30 28 225 123 48 122 47 425 5% 11
5/21/09 29 25 210 120 41 35 111 41 391 13% 17
7/18/09 27 22 200 114 32 29 113 37 372 19% 25
9/8/09 26 22 177 116 20 25 98 25 326 32% 33
10/22/09 21 20 169 113 14 24 98 25 312 41% 39
1/5/10 23 20 157 113 16 22 88 18 290 50% 50


Fifty percent shrinkage after 50 weeks of chemo. Impressive. But the question remains, why/how did metastasizes to the spine develop and progress concurrent with the shrinkage on the other fronts? Regardless, there are experimental drugs that are proving effective at addressing spinal mets, and I am confident that we will identify one. Radiation should also prove useful on this front.

There are some encouraging signs of reawakening of my legs, so my surgeon wants to perform another surgery in a few days to give me every possible advantage. I’m too tired at the moment to detail that surgery but will when I can. Heading off to MRI for a brain scan in a moment . . . hoping they don’t find an empty box.

Flying Lessons.

Throughout my life I have flown in my dreams. No, not with the aid of heavier-than-air machines, or even hot-air balloons. Just by means of good, old-fashioned arm flapping. It’s not exactly that simple, of course, as there is some specialized technique required of such exploits.

Outstretched laterally from the shoulders, both arms are rapidly swept in a fore-and-aft direction. The angle of attack of the hands is continuously adjusted to generate upward lift with each arm stroke. This process eventually results in a controlled liftoff. Once an altitude of a hundred feet or so is achieved, I rotate my body into a prone position and begin to glide, using my arms and hands for directional guidance and minor altitude adjustments.

I know virtually nothing about dream interpretation, but have read that such dreams indicate abundant determination and optimism for relief from setbacks. And so I will germinate the seeds of whatever it is that conjure up such dreams to help address my latest setback.

You may recall that I resumed chemotherapy last week (Tuesday and Wednesday, January 12 and 13) after a nine-week break. I think this was my thirteenth round. The usual tiredness and muscle weakness began on schedule a day or two later. But by the weekend I had lost all function in my legs again. So more ambulance rides. Three more hospitals. More spinal scans. And by Monday of this week, I was undergoing spinal surgery again in LA. At a different hospital, and with a different surgeon than the first go-around in December. Apparently, the spinal tumor either was not adequately removed during the first procedure, or it grew like gangbusters during the five-week interval, or some combination thereof. Pathology and another MRI may shed some light on that over the next couple of days. And then the decision will be made regarding the possibility of more surgery, radiation treatment, and/or a modified chemo regimen.

In the meantime, I once again find myself flat on my back in a hospital bed. But this time I no longer have any motor control in my legs. None. Zilch. I still have muted skin sensation and the doctors consider that somewhat of a positive sign, but I am a realist: I will be living with paraplegia for at least some period. Ordinarily, this would be a devastating realization but I am hardened and strengthened by the challenges that have been already been laid at my feet, so this represents just another speed bump for which I will need to slow my roll.

Centuries ago paraplegia would have relegated me to appetizer status for the first hungry lion to wander across my path. But in today’s world, round-the-clock early-onset assistance from an army of caregivers (made possible by a quality health insurance policy) offers me the option of continuing to contribute to society, albeit at some reduced level. Time will tell as to which era in mankind had the best approach, but personally I’m happy for the choices today’s world affords me. So onward I march, in a manner of speaking anyway.

Cecily, of course, is here every step of the way, doing the big things and the little things, keeping my spirits high and my attention on the future. She is an amazing tower of strength from which I am able to maintain the perspective of focus on distant horizons. And I occasionally glance upward, looking for a break in the clouds so that I can get those arms flapping again.

They went that-a-way . . .

More aimless meanderings this past week through the LA medical machine. I was supposed to get more Trabectedin but didn’t because the medical director at the chemo factory waffled (again) on his position regarding one final treatment. But he doesn’t seem to understand (or does not want to accept) the fact that I had never been given the one (and only) type of scan that would have identified the spinal metastasizes before they resulted in my paralysis in the Middle East: a spinal MRI. So was the Middle East incident a failure of Trabectedin or a failure of imaging protocols? After sending me back home last week, he again changed his mind and I’m now set for treatment this coming Tuesday.

Went to a major medical center in LA regarding treatment of the spinal metastasizes with radiation. Although these guys specialize in stereotactic radiotherapy (resulting in maximum dosage to lesions with minimal collateral damage) they recommended an old-school low-tech treatment approach. (Seems as though the lesions are not limited to T6-8 but rather are distributed up and down the entire spine). I tried my best to understand their rationale but could not – chalk it up to my vicodin-induced haze, weasel-worded doctors, or both. But something smelled fishy in Denmark so we will solicit the opinions of some of their “competitors” before committing to an approach.

I continue to experience a substantial amount of pain and stiffness in my back. As previously noted, this appears to be coincident with a general return of sensation. So I consume the usual cocktail of this and that in an effort to knock down the pain . . . it takes some time but the recipe usually gets dialed in right at some point.

Of course, return of the opiates means a return of my old friend constipation. So on top of the pain cocktail we add fiber, osmotics, and stimulants. Orally and . . . ahem . . . by suppository. Every morning. But it’s beginning to get the job done. And I tell you, it’s no fun being backed up, particularly in light of the other freeloaders that have taken up residence in my abdomen.

Walking continues to be a chore but I seem to make a little progress every day, contrary to the anticipated January 1 “drop-dead date” regarding improvement. My legs are getting stronger and more coordinated but I still use the walker most of the time, only occasionally using the dual-cane approach. All in good time, all in good time . . .

The Foley catheter was removed from my bladder on Thursday. It is certainly nice to no longer be tethered to an external pee bag – I much prefer the internal one that was part of my original build. However, I cannot yet relax the muscle that allows me to pee. So in order to prevent my bladder from overflowing, I have to “self catheterize” four times a day. This entails sticking an 18” tube up through my you-know-what and into my bladder. At 7AM, noon, 5PM, and 10PM. The urologists tell me they are optimistic that I will regain control of that valve soon. In the meantime, the workaround is not as bad as it sounds. And of course, Cec is always there to offer cheerful words of encouragement during the process . . .

I regularly awaken in the middle of the night in searing pain, needing drugs and/or a shifting of my body position. Sometimes I need to get out of bed and into a chair. I don’t know how the rest of you respond to being awakened prematurely, but I am always grumpy. But no matter what time it is, 1AM, 2AM, 3AM, Cecily pops right up and hurries over to my side of the bed, walker in hand, a kind smile on her face. And in the darkness I can always tell that she asks for nothing, except maybe a return smile and a kiss. Precious moments.

So I spend a lot of time reflecting on how easy life used to be. About all the things I used to do without giving them a second (or even a first) thought. And as I now struggle with even the most mundane tasks, I am compelled to state Paul’s Third Law: “Live for more than just life’s good moments. Identify and savor small, seemingly insignificant accomplishments. And understand that without thoroughly embracing the bad moments you cannot possibly put anything in its proper perspective.”

Happy New Year!

2009 was an interesting one. It was not more than seven days old before two cardiac surgeons were cutting a hole in the membrane surrounding my heart. And nineteen days before the year’s end saw a team of neurosurgeons disassembling a portion of my spine to partially remove a tumor that was causing paralysis by compressing my spinal cord. And in between was lots of experimental chemotherapy, mainlined straight to my heart. How was your year?

During this past year I learned a lot about human nature and character. It seems that some people rise to the occasion, no matter how difficult the challenge or long the odds, while others implode at the first indication that the wind is no longer at their back. I’m grateful that most of the people in my life are in the former category rather than the latter.

Good news: I’m regaining sensation in my torso and legs – walking is improving though I still need assistance.

Bad news: I’m regaining sensation in my torso and legs – stuff sometimes hurts like a sonofabitch.

I don’t know what 2010 holds in store for me. None of us do. But if it’s a tussle it wants, a tussle it shall have.

Say what you will . . .

. . . but don’t ever say that I don’t have a pot to piss in. Here’s a shot of the team emptying my pee bag into a flower pot in Mom & Dad’s backyard on Christmas Day.

And yes, we also took some more traditional holiday photos . . .

I hope all of you had as nice a Christmas as we did!

“Look Ma – no hands!”

Santa brought me something very special this morning – the ability to take a few steps for the first time without use of the walker! I wouldn’t really call it walking – “controlled stumbling” would be a more accurate description. But it’s a start and I’ll gladly take it.

Off to Mom & Dad’s for Christmas dinner with the family. A Very Merry Christmas to those who celebrate it, and Happy Holidays to those who don’t!

Don’t look now . . .

. . . but I think the captain just jumped ship. But I get ahead of myself.

Cecily and I spent the last two days in LA. Yesterday with the neurosurgeons who performed my spinal surgery. They removed the staples from my back and seem to be genuinely impressed with my rapid recovery from the cord compression and subsequent emergency operation. Under persistent questioning they reiterated that I could continue to expect improvement in lower limb function for up to one year, but stopped short of promising that I would return to normal. Of course in today’s litigious world, I don’t believe that I could get them to promise that the protrusion in the middle of my face is in fact my nose. But honestly, I feel that it will only be another week or two before I’m able to jettison my walker and graduate to some sort of a cane. And from there, well, the Winter Olympics are just around the corner . . .

Today we saw the medical director at the chemo factory. Remember how I was the rock star there not so long ago? Well, it seems that it only takes one tumor to flare up to be relegated to the position of one-hit-wonder. And so I was essentially handed my guitar and told to move along. At least that’s the way it felt. While they used to fight to keep me in their clinical study, I am now free to seek access to the same drug in Santa Barbara under a “compassionate use” program. The medical director stated that he thinks the Trabectedin is no longer working for me, but I think we need to see proof of that on the next CT scan.

So even though the captain may no longer be firmly in command of the ship, the crew still is and onward we shall sail.

And by the way, it turns out that this latest tumor began in the vertebra, not adjacent to it, so it supposedly is difficult to detect on a CT scan. Much better to image on an MRI. So why have I been undergoing CT scans on a regular basis rather than MRIs???? The answer to this appears to be rooted in the cost of CTs vs. MRIs, and how frequent the drug sponsor wants feedback, and well . . . potential conflict between what’s best for the patient and what’s best for the clinical trial. More investigation into that later . . .

In the meantime, I’ve been asked to seek radiotherapy for the lesions that remain in the vertebra. Not real excited at this prospect. And it turns out that a patient cannot do chemo and radiation concurrently, so some scheduling will be necessary. Not that I’ll mind taking a break from chemo. By the way, I think that is what was causing the blood in my urine as that has now resolved after being off of Trabectedin for seven weeks.

On the positive side, I now have a fully executed DMV application for a disabled parking permit – kinda’ looking forward to using that as necessary. And I’ve received a few comments on my pre-shower photo, comparing me with various celebrities of sometimes dubious distinction. So next time you’re in Southern California and think you see Pat Riley, Charles Manson, Jack Nicholson, or Nick Nolte emerging from a car with a disabled parking sticker, be sure to wave – it might be me!

Now that was nice . . .

I just had my first shower since Thursday morning. No, not last Thursday. The Thursday before that. When I was still in Jordan. In the meantime, two very long flights with sloppy potty habits, spinal surgery, laying flat on my back for days on end, and physical therapy.

I’m told that after a few days without a shower I begin to channel Pat Riley. It’s another few days of riding the slippery downward slope before I land in Charles Manson’s lap. And after eleven days? Well, let’s just say you wouldn’t want to meet up with me in a dark alley, partial paralysis or not.

My walking ability continues to improve, albeit slowly. Cec tells me I’m making remarkable progress, but one of her many qualities is an unwavering positive outlook. Tomorrow the neurosurgeons take the 33 staples out of my back. We’ll see what they have to say.

I really did receive excellent care at the hospital in LA. The physical therapist assigned to me for my first jaunt out of bed was a questionable choice, however. She stood about 4’9” and couldn’t have weighed more than 85 pounds. All that stood between me and the hospital floor on that first journey was this young woman, tethered to my torso with a strap. Had I plunged toward earth, she would have been nothing more than the tail on a kite. The thought of ending up in a ridiculous heap on the floor with her was enough to keep me on my feet. Maybe that was the plan all along.

If cancer is a bitch . . .

. . . then paralysis is a bastard.

I cannot begin to convey how frustrating it is to have lost the ability to walk. To lose command of an activity that has been second nature for 50 years is unfathomable. While it was nice to awaken at home to familiar surroundings this morning, it also served to underscore that something is terribly wrong as I lay motionless on my back, staring at the ceiling.

I am impatient by nature, and I do not have it in me to abide by limbs that are unresponsive to commands. While I have noticed slow progress in strength and coordination since I first logrolled out of bed on Monday, I am far from satisfied. The neurosurgeons have predicted that I will continue to improve for another couple of weeks. So given that the progress window is expected to close sometime around New Year’s Day, I’ve got a lot of work to do between now and when the party hats come out. Time to pick up the pace.

Thanks to all for your encouragement – sometimes that’s what enables me to put one foot in front of the other.

Recovery.

Cecily and I enjoyed a nice visit from my mom and Karen on Monday – it was good to see them and for them to see me. My first physical therapy session began just as they arrived. It was the first time up off my back since I deplaned at LAX on Friday.

With the help of a walker, I walked out of the hospital room and then back in again. This seemed to be a big accomplishment. Hooray. That was it for Monday. On Tuesday I walked 150 feet, again with the walker. The surgeons were impressed. Hip Hip Hooray. This morning I walked another 150 feet, and then once around the floor this afternoon (click on action-packed video below).



The neurosurgeons seem genuinely surprised and pleased at the progress I’ve made since arriving on Friday paralyzed from the waist down. It’s nice to know I’ve exceeded their expectations at this point. They’ve stated several times that despite the need to deal with spinal cord compression quickly, I made the right decision to get on the plane and head for home. Here’s a photo of the six-inch incision in my back, neatly stapled up.


The plan at the moment is to discharge me from the hospital tomorrow (Thursday). Given my progress on the ambulatory front, the originally planned two- week layover at a physical therapy facility has been deemed unnecessary – I get to go straight home! However, the Foley catheter (that drains my bladder) will remain in place for another couple of weeks. It seems that my bladder was filled to three times its normal capacity during this ordeal, so the urologists want to give it a chance to recover before allowing it to fill again. The things we take for granted . . .

This medical odyssey is certainly filled with many characters. Chief among them is an Indian internist who grew up in Thailand and does spot-on impressions of Stevie Wonder and Ray Charles. Between standup routines he is one of the most vocal advocates I have.

The question persists as to how the spinal tumor that caused all this commotion was not detected, and how we are going to treat what remains of it. But we’ll leave that for another day . . .

I’m going to try for another walk around the floor later this evening. I swear I’m gonna sprint for the exit if I get the chance.

And from somewhere within this week’s fog of paralysis and opiates, Paul’s Second Law has emerged: Although you’re not supposed to count your chickens before they hatch, eating them before they hatch is perfectly acceptable.

The plot thickens.

Petra is incredibly beautiful. Carved into sandstone cliffs more than 2,000 years ago, it has been described as "a rose-red city half as old as time". Here are a few pictures of my visit there on Wednesday, December 9. Unfortunately, there is a chance that this was the last day I will walk normally.


I awakened Thursday morning with a loss of coordination in my legs and an inability to pee. As the day progressed, I assumed the look of a drunken sailor on shore leave. I’m sure I impressed many Jordanians in the process. We returned to Amman Thursday as I was scheduled to present preliminary findings to the team that afternoon. I got through the presentation but decided it appropriate to visit an emergency room late afternoon. The usual delays due to confirmation of insurance ensued. The ER doctor wanted to admit me to the hospital for scans, but I was facing a dilemma. If the treatment for my deterioration could be deferred by a couple of days, then I would fly home for treatment. If it was more serious, i.e. something that required surgery, then did I really want to have treatment in Jordan where I don’t know anyone, the doctors are not familiar with my case, and a not inconsiderable language barrier exists? Any testing would probably just highlight that something needed to be done quickly, and because the tests would likely be repeated in the US, would just delay matters. So I made the decision to fly home immediately.

I was able to arrange a flight out of Amman just after midnight on Friday morning. Twelve hours to New York. My condition worsened on the plane. My legs lost most of their coordination and strength, and I began to lose control of my bladder. I told the flight attendants that I would need wheelchair assistance upon arrival in New York. Being pushed through an airport in a wheelchair is a pretty sweet deal as you go to the front of every line. But at customs I was asked to go to a special room, where I sat in my wheelchair in piss for an hour in a room full of Arabs. As the Homeland Security agents interviewed the others, most issues seemed to arise from inconsistent spelling of names on travel documentation. I could not figure out what I was doing in there, but the process does not allow for questioning. Finally, I was called to the desk. The agent handed me my passport and said “Sorry – you have a common name”. I maintained enough self-control to keep the obscenities at an inaudible level as I was wheeled out of that depressing holding room.

I had now missed any chance of catching the first flight out of JFK thanks to my “common name”. Fortunately, I was able to get on the next flight which was scheduled for arrival at 11:30 Friday morning. The flight was nearly empty which was really good considering the amount of piss in my pants and the difficulty I had in dragging my sorry ass from my seat to the bathroom and back. By the time I landed at LAX, my legs were dead weight and essentially useless. Cecily had done an amazing job of organizing the medical reception in LA with appropriate hospitals and experts. I don’t know what I’d do without that girl, I really don’t.

Five MRI scans revealed a previously undetected tumor adjacent to the spinal column. A couple of fingers from this tumor had entered the spine at T6 and T8, and were impinging on the cord, causing the problems I was experiencing. I had a great team of doctors in my corner insisting that surgery be performed first thing Saturday morning. And so it was. The back half of vertebras T6, T7, and T8 were removed and the portion of the tumor that was within the spinal column was resected. Early indications suggest that the strength is returning to my legs.

Hopefully, the pathology report will be ready soon. I am quite confused as to why this tumor was not detected on the CT scans that are performed every six weeks, but I will investigate that issue later. In the meantime, I spent the first 24 hours after surgery flat on my back. I’m now at a 25 degree angle, and will begin physical therapy sometime this morning. It is my understanding at the moment that I will be in the hospital for another few days and then be transferred to a physical therapy center so that I can learn to walk again.

All in all, it was a remarkable two-day turnaround between awakening in Petra, Jordan, on a Thursday morning with weak legs and spinal surgery in Los Angeles on Saturday morning. What an adventure. I am certainly blessed to have so many competent and caring individuals supporting me in all of this, starting with Cecily.

First Law.

I’m somewhere over the Atlantic as I write this. My back is to Los Angeles and the Boeing 777 is hurling me toward Paris at about 700 mph. After a three-hour layover in France I’ll be on my way to Amman, Jordan.

I just returned from the bathroom where I purged a mixture of urine and blood. This happens frequently enough that it no longer fazes me, even at 38,000 feet. Someday it will resolve itself or it will be resolved, but I’ve got bigger fish to fry at the moment.

In addition to the well chronicled litany of health issues, I now have the dubious honor of adding a pinched nerve to the list. This started to the left of my spine just below my shoulder blade. Over the last couple of weeks it has migrated around my left side and across my chest, stopping at the sternum. The skin sensation in this strip is an odd combination of numbness and burning – classic signs of a nerve pinch. Although trabectedin has been implicated in nerve damage in some patients, it really isn’t possible to say whether the chemo is the causative element, is exacerbating the problem, or is completely unrelated.

I visited the chiropractor the afternoon before my departure, and then again first thing in the morning the day of departure. This guy was able to help me with a similar complaint several years ago after ineffective treatments with acupuncture and massage therapy. We’ll see what happens this time. While the pain isn’t too bad during the day, it really escalates at night when I lay down and try to sleep. Should put an interesting twist on recovery from jet lag. But I’ve got lots of Advil with me and that should do the trick. If I can just stay off the donkeys and camels . . .

So did I consider cancelling the trip given all that I have going on? Nope. Why not? A couple of reasons. First of all, given the flurry of activity over that past several days to ensure that I received all the necessary approvals to travel, a cancellation at this point would likely mean that I wouldn’t see another contract again from the Department of the Interior. And this is a great opportunity to experience some of the Middle East and get paid for it. But most importantly, I absolutely refuse to yield one inch to this bitch called cancer.

And that leads me to Paul’s First Law: Don’t let the process of staying alive get in the way of being alive.

Postscript: I’ve landed in Amman Jordan. Uneventful (maybe even enjoyable) journey so far. Now let’s see if I can get to sleep before tomorrow morning’s project kickoff meeting.

All systems go.

Well, I received notice today that my emergency evacuation insurance was approved. The gears of progress apparently processed the “Statement of Physical Examination” and had no further questions. I guess a golf-ball tumor in the heart ain’t what it used to be.

So I depart tomorrow (Friday), one day later than originally planned. I’m told that I’ll have internet access at the hotel, so I’ll try to post a few thoughts to the blog while I’m over there. But if for some reason there are long gaps between updates, PLEASE DON’T WORRY. That will just mean that I actually don’t have internet access, or that I’m too busy sprinting for the hills.

Flat Foot.

So I swung by my doctor’s office at 5PM yesterday to pick up the “Doctor’s Statement of Physical Examination”. This document is required in order to obtain “MEDEX” insurance which the US government obtains on the contractor’s behalf to ensure that airlift is available in the event of medical emergencies. Of course, the Statement is used by the insurance underwriter to make sure that there’s no chance that they will have to provide the service that is being insured. Hence, my apprehension regarding what would be on the Statement and how the underwriter feels about extraneous golf balls in the heart . . .

The form is surprisingly short – so you would think it would focus exclusively on important matters that might lead to medical emergencies. So imagine my surprise that it probes into serious medical issues such as “Is flat foot present?” Flat foot??? “Hey doc, I really gotta go home. Yep – my damn flat foot is acting up again.” And hemorrhoids. How bad does a case of hemorrhoids have to be to require emergency airlift to Europe? I mean, this isn’t exactly the type of malady that sneaks up on you some lazy afternoon, right?

The “one size fits all” form includes assessments such as “So handicapped as to be a hazard to self or others”. Fortunately, that box wasn’t checked.

In the end, the Statement includes mention of an “intracardial tumor” and that I am “limited to moderate (not extreme) exertion”. Hopefully, this danger pay stuff doesn’t involve periodic sprints for the hills.

We’ll see how much pushback there is from the insurance underwriter on all of this. In the meantime, the government has made my flight reservations . . .

Danger Pay.

Talk about being pigeon holed. Those of you who have been following the blog may recall that I recently consulted to the National Park Service on the procurement of environmentally-friendly transit vehicles by a park that showcases ancient cliff dwellings. Well, it seems that one of the gentlemen I worked with on that project recommended me to the US Department of Interior for a “World Heritage Site” project in the Middle East that showcases, you guessed it, an ancient city carved into the cliffs. So it seems that when you’re a tourist destination needing technical expertise regarding the deployment of alternative-fueled vehicles for shuttling visitors to and from rock-cut archaeological sites, I’m the guy. Yes, it’s a ridiculously narrow niche, but I’ve got the corner on the market!

The job is at Petra in the Kingdom of Jordan. At the moment, tourists are shuttled about on the backs of horses, camels, and donkeys. That’s about as environmentally friendly as it’s gonna get, but apparently the animals are overworked. So if it’s vehicles they want, it’s vehicles they’ll get.

I just learned of this trip last Tuesday (two days before Thanksgiving). And they want me to depart for the Middle East on Thursday of this week. That’s less than five business days to navigate the crush of paperwork and preparation that is inevitable with government work of this sort. One of the many tasks is to agree on a rate of pay. I have a standard rate that is apparently higher than the government pays. (I’m not exactly sure whether I’ll be paid by the US or Jordanian government, but in the end I get paid in US dollars so I don’t really care.) We were briefly stalemated over the rate-of-pay until someone realized that travel to Jordan is eligible for a 15% “danger pay” premium above customary government rates. Pay gap problem solved. So assuming the statement of physical fitness from my doctor doesn’t raise any red flags (I told you there’s lots of paperwork) I’ll soon be off on another adventure – tumors, laptop, and all.

The timetable for the planning of this trip is ridiculously abbreviated. I hope that final confirmation for the trip occurs more than an hour before departure. I mean, they must understand that a trip that involves danger pay takes a little preparation, right? But then again, maybe they don’t . . . after all, they’re still riding donkeys.

Another CT scan.

CT scans are interesting in that they provide a measure of progress. I kinda’ think that how I’m feeling should be the definitive metric, but I have little say in the matter as I am only the patient. And because the clinical protocol for the trial of this drug calls for a CT scan every other cycle, I submit. Never mind that these scans dose me with enough radiation to power a small space ship, or that even low level radiation can cause cancer . . . after all, the patients in the study already have cancer so who cares?

Anyway, the most recent scan was performed last Thursday and I just received the report today. Rather than post a couple more unreadable charts, I’ll just stick to the salient facts:

Weeks on Trabectedin: 39
Mean reduction in largest cross-sectional lineal dimension for five largest tumors: 31%
Mean reduction in volume for five largest tumors: 80%

So the volume of these buggers is being reduced by about 2% per week. What you can’t tell from the above data (but what I can see from the latest graph) is that the rate of shrinkage is slowing somewhat. And the tumor in the heart is “grossly stable” in the parlance of the reviewing radiologists. (This is not unexpected as its metabolic rate appears to be exceeding low.) So taken all together, I’m pretty sure the data suggests that I still have more than ten weeks of chemotherapy remaining. But with any luck I’ll kick the habit sometime in 2010 . . . and that occasion will be celebrated with a party fit for a rock star.

For the record, Cecily predicted early in this process that I would be on Trabectedin for 100 weeks. Looking at the above numbers, I wouldn’t bet against her.

No good pound goes unpunished.

“183.5” read the digital scale at the chemo factory as I stepped off of it. Although this is the weight at which I’d normally begin cutting back on caloric intake, you’d think I’d just whipped Usain Bolt in the 100-meter dash judging from the reaction of the chemo staff.

“You’ve gained almost 30 pounds since you started chemotherapy” said one of the white-coated functionaries. Given the smiles and somewhat puzzled looks I take it that this doesn’t happen very often.

But rather than being awarded a gold medal, I received a higher dose of Trabectedin (2.4 mg) as my increased body mass was taken into consideration. So much for small victories.

At the conclusion of a brief exam, the center’s medical director asked me how many rounds of chemo I’d had. I told him that this was my twelfth round but I didn’t remind him that he’d tried to get me to switch drugs at round four, telling me that the Trabectedin wouldn’t work beyond the fifth or sixth round. He then pleaded with me to talk to two new patients. One was a Chinese woman with leiomyosarcoma who was beginning her first treatment with Trabectedin after other treatment modalities at a major teaching hospital in Los Angeles had failed. The other was a prospective patient from San Francisco with liposarcoma in his belly for whom surgery, radiotherapy, and conventional chemotherapy had all failed.

I find it amusing how I’m regularly asked to speak with new patients. It turns out that patients don’t come any more messed up than me, and don’t often have such a positive response to treatment. If it’s possible for a chemo factory to have a rock star, I’m it.

Although I really don’t know what to say to such patients, I never seem to be at a loss for words (surprising, huh?). I simply try to encourage them by conveying my story, hoping that they’ll understand that no matter how bad off they are, or what they’ve been told by the professionals, there’s always hope. Although I’m always tempted to give them the “your mileage may vary” caveat, I never do. They get enough of that everywhere else. I believe my job is to dispense hope, not common sense.

Since my last post I made another business trip to Colorado. More hiking at altitude, more “Caution” signs left in the dust. Damn, it’s great to feel good again.

I still piss blood occasionally, but then what rock star doesn’t.

More data, more or less

Just completed Trabectedin Round #11 yesterday. Feeling really good, but of course the tiredness and nausea usually doesn’t hit me until Sunday evening. However, since lowering my dosage I’ve only puked once over the last two cycles (instead of five or six times each cycle) so I’m optimistic that we’ve settled on a winning treatment regimen.

I’ve now processed the data from the last two CT scans and will try to present it in a more simplified manner than previous attempts. The clinical trial protocol uses what’s known as “RECIST” criteria which in essence tracks the largest of the two major cross-sectional linear dimensions for each tumor (the longitudinal dimension is not recorded because it is considered the least accurate measurement). In my situation, they are tracking five tumors (abdominal, gluteal, spinae, right lung, and left lung). And “progress” is compared against the dimensions that were recorded at the outset of the treatment course, not against the point at which the tumors were at their maximum size.

Following is a graph depicting the RECIST results (i.e., maximum lineal cross-section dimension for the tracked tumors). The bold black line represents the average value. The vertical dashed red lines represent Trabectedin treatments at the higher dosage, while the vertical dashed blue lines represent the 20% reduced dosage. For those of you that do not like analyzing graphs, the maximum lineal cross-sectional dimension for the average tumor has shrunk by 28% since the sea squirts were set loose.


Because lineal dimensions do not tell the full story in terms of tumor volume, I’ve also compiled the data in volumetric terms. For this analysis, I’ve used the average of the cross-sectional dimensions for each tumor and assumed that the change in longitudinal dimension has approximated the change in cross-sectional dimensions. The result of this analysis is depicted below. Again, for the graphically-challenged among you, the estimated volumetric data indicates an average shrinkage of 76%. (The largest tumor, the one in my abdomen, has shrunk approximately 46%.)


In summary, I’m thrilled with the dimensional results and how well I am feeling these days. And I’m very grateful that during the 1950s and 1960s, the National Cancer Institute carried out a wide ranging program of screening plant and marine organism material. Extract from the sea squirt was found to have anticancer activity in 1969. Harvard chemist E. J. Corey developed a synthetic method of preparation in 1996 and it was first dosed in humans that same year. Although it is also in phase II trials for ovarian, prostate, breast and pediatric cancers, it is my understanding that it has proven most effective against myxoid liposarcoma, that rare beast that first hitched a ride with me seventeen years ago.

Onward and upward.

Why do they issue such challenges?

So there I was, 7,000 feet above sea level, trying to decide whether I really wanted to see the cliff dwellings. The atmospheric pressure at that altitude is 23% lower than that at sea level, adversely affecting cardiovascular, respiratory, and metabolic systems. My cardiologist had expressed concern that my “reserve” is diminished and declined to “sanction” the trip. I’m confident that he would have chained me to a tree rather than allow me to embark on a sightseeing excursion that involved a climb out of a canyon equivalent to a 15-story building.

I was vacillating on the decision . . . until I saw the sign:


CAUTION

Visiting the cliff dwellings will involve …..
strenuous hiking and climbing.

If you have any health problems
do not attempt.





The proverbial gauntlet had been thrown at my feet, and I certainly was not going to allow the National Park Service to dictate what I can or cannot do. And I’m not even sure that a golfball-sized tumor in my heart, multiple metastases in my lungs, and numerous other tumors scattered through my body actually qualify as “health problems”. They're shrinking, right? So off I went.

I was traveling with a friend and colleague who is aware of my “situation”. At the outset of the journey he dutifully (and frequently) inquired as to how I was feeling. Each time my reply was the same: “Fine”. Finally, after the third time he asked the question, I said: “John, no matter how often you ask or what I say, the first indication you’re going to get that I’m not feeling well is that I’ll be flat on my face”. He nodded in acknowledgment and that’s the last time we had that meaningless exchange.

The cliff dwellings were fascinating and the trip back out of the canyon was uneventful. I stopped to catch my breath halfway up but so did most everyone else.

And just to prove a point, the next day we took a coal-fired, steam-powered train to an elevation of 9,400 feet. “If you have any health problems” my ass.

Rounds 9 and 10

Two chemo cycles have snaked their way through my body since my last post. And I’m really pleased to report that I’m tolerating the reduced dosage much better than the maximum allowable dosage that I received during the first eight cycles.

You see, the thing to remember here is that I am enrolled in a clinical trial. And that means that while some preliminary research has been conducted, the majority of it is still ongoing. This in turn means that when you sign on the dotted line you have no guarantees whatsoever. Only a vague understanding that the drug might help your situation and probably won’t kill you. At least not while you’re within spitting distance of the doctor.

You may recall that I had some trouble during the prior few rounds with muscle soreness and elevated CPK levels. So my dosage was reduced by 20% (from 2.80 to 2.25 mg Trabectedin). And this seems to have done the trick. Minimal muscle soreness and CPK levels as low as 42 (contrast that to the prior 3,850 level that won me a two-night stay at the hospital).

My belly continues to slowly reduce in size – I kinda feel like I’m living through a reverse pregnancy. And I continue to feel better with every passing day. It’s easier to do ordinary household chores again, simply because I’m able to bend over. (Not that I’ve ever been a whirling dervish when it comes to household chores.) And I’m beginning to venture out more and more.

A buddy and I went to a Dodger game immediately prior to Chemo Round 10. We got there right when the stadium opened. We both had to pee after the long drive so we made a beeline to the restroom. It was empty. For those that haven’t had the pleasure of peeing at Dodger stadium, the facility consists of a 20-ft long cattle trough. We assumed stations at opposite ends of the trough and peed – me a stream of blood.

Not this again. No pain, just blood. Hmmm . . . this was going to be a problem for the rest of the evening when the trough was occupied elbow-to-elbow. On the way out I noted where the trough drains were so that upon a return trip I could pee directly into one and spare fellow Dodger fans having to watch a stream of blood make its way downhill. I mean, what the hell do you say in that situation? There’s really no such thing as a satisfactory explanation.

Fortunately, I didn’t have to use the restroom again for the remainder of the game so I avoided the inevitable freak show. But we did have to rendezvous with Cecily who was scheduled to pick me up after the game. That’s a near impossible task in the traffic jam that is Dodger Stadium and vicinity as a sellout crowd departs. Anyway, after many frustrating attempts to reach the same coordinates at the same time, we just got on a freeway at about 11PM and exited at one of the first off-ramps, which put us in an undesirable area of LA known as Filipinotown.

We pulled off the main drag into the parking lot of a McDonald’s. It was closed. But we could see one employee through the window. He was vacuuming the light bulbs. You know you’re in a bad neighborhood when the light bulbs require vacuuming.

My buddy got out of the car to walk around to the front of the McDonald’s to determine the cross street so that I could phone it in to Cec. You know you’re with a good friend when he says “I hope I don’t get shot”. As for me, I had to pee again. And of course, that meant more blood. As I expressed regret that I had left a puddle of blood in the bushes at the drive-thru, my buddy assured me not to worry, that it was a nightly occurrence in that neighborhood.

The bleeding resolved the next day and hasn’t returned since. You may remember that I gave the doctors a shot at me on this subject. The urologist that I saw indicated that because the kidney stents looked good on x-ray and an infection wasn’t present there was no cause for concern. I certainly don’t plan to give him another shot at me on this.

Anyway, despite the occasional blood in the urine I seem to be thriving. So much so that I’ve agreed to my first business trip in more than a year. It was too good a consulting gig to pass up, so there I’ll be – at over 7,000 feet elevation with a golf-ball sized tumor in my heart and numerous lesions in my lungs. Talk about climbing a mountain!

Before some of you get too excited about this, I did confer with my cardiologist. He spoke with the usual forked tongue, saying that although he could not “sanction” the trip my heart is functioning normally. His biggest concern seemed to be that if I experienced altitude sickness that it would take me longer to recover from it. Whatever. What am I supposed to do, spend the rest of my life at sea level?

I’ll post an update over the Labor Day weekend regarding how the trip went. Until then . . .

One Year

It’s hard to believe (or perhaps maybe not), but it’s been one year since my first post to this blog. A lot has transpired in that interval. The overall trajectory seems to have been from bad news to worse news to flailing about to steady progress.

Ever spent any time documenting your wishes for your memorial service? Trust me, it’s quite depressing. Obviously, I’m still in a bit of a predicament, but I like the direction things appear to be heading.

Although my goals seem to be more short-term oriented than anything else (when you have as many critical metastases as I do every morning you awaken is a victory), I do have some fuzzy objectives for Year 2:

1. Continue kicking;
2. Reduce the tumors to “afterthought” status (by chemo, surgery, hook, or crook);
3. Refuse to allow this experience to be anything more than an opportunity for reflection and enlightenment.

And as I plunge headfirst into Year 2, I would like to thank all of you for your continued encouragement, love, and support. Whatever progress I have made is largely due to the positive vibes I’ve received from your prayers, phone calls, emails, letters, postcards, text messages, blog comments, etc., etc., etc. And if any of you should ever find yourself in a similarly unfortunate health situation, the most important bit of advice I can offer is to surround yourself with people like Cecily – those with endless positive energy that do not allow contemplations of anything but positive outcomes.

“Fabulous”

Chemo round #9 is now completed. As usual, the infusion began in LA on a Thursday and concluded on a Friday. But my cell phone rang on Thursday evening – it was the chemo factory. It seems the medical director was displeased that I hadn’t been examined by him or one of his staff doctors for a few rounds. As if the visits to the SB oncologist, urologist, cardiologist, and hospitalization weren’t enough to keep me busy. He stated that his nurses should NOT have begun round 9 without an examination by him or one of his staff, and that that would not happen again. Seems more like an internal problem at the chemo factory – why was he wasting my time about their sloppy protocol? It’s really not my fault that the hours he keeps make a banker look like a sweat laborer by comparison.

Anyway, he was uncharacteristically in the office the next morning. I was summoned to an examining room. First on the agenda was a brief discussion relating to my futile efforts to make the drug available to me in Santa Barbara. He relayed that he had heard that I wanted to change venues because he was pressuring me to switch medications. (While this was true at one time, he has backed away from that position recently.) I told him my primary motivation was to avoid the trip to LA every three weeks. I think we came to an uneasy understanding to just move along.

A brief exam ensued that involved examination of the most palpable of the tumors. He looked first to the left spinae muscle location. But nothing is detectable there anymore. He then examined the left hip – almost nothing there. He then reviewed the CT scan history. We discussed the reduction in lineal dimensions and how that translates to an approximate 50% reduction in average tumor size.

“Not bad, huh?” I asked.

He peered back at me over his glasses: “Fabulous. I only wish all my patients had such positive results.”

Cecily and I went back out to the common area to wait for the infusion to conclude. A short time later he brought another patient over to meet me. This woman has had four rounds of Trabectedin but has apparently not experienced the response that I have. I did my best to encourage her, offering up that it took several rounds before I began to see measurable progress. But she doesn’t even have the same type of sarcoma that I do, so who knows.

But the point is that I went from goat to headliner in less than 24 hours. But best not to get too caught up in the opinions of the medical professionals because they change with the winds. It is enough for me to see the tumors shrinking and my overall health improving. And that's something I can hang my hat on.

A smaller bucket of poison.

My blood test on Monday revealed a CPK level of 65, well within the normal range. While on the face of it this is certainly good news, it unfortunately green lights the chemo factory to begin preparing another bucket of poison with my name on it. I was just getting used to feeling great again. Oh well, all good things must come to an end . . .

After the recent two-night hospitalization to address the stratospheric CPK level, I embraced the delusion that this might mean a decrease in the frequency of chemo infusions. No such luck. It seems that the Purveyors of Fine Poison want me to continue to upend my life every three weeks, albeit with a dosage reduced by 20% from the maximum allowable dosage. I’d like to think that there exists some solid medical rationale for this, but I suspect that maintaining the frequency of service has more to do with revenue streams than anything else. So back to LA tomorrow . . .

It’s tough to argue with progress.

Caution: Craziness Ahead

My mother raised a fool. Oh, in all fairness to her (and to me), not your common blathering idiot with beads of drool tumbling down his chin, but a fool nonetheless. You see, I am prone to a steady stream of cockamamie ideas that for some reason I am often powerless to abort before they develop into full-blown, real-life manifestations with formidable momentum. Starting an electric bus company, a smoothie & coffee bar, and planting a vineyard are but a few examples that immediately come to mind.

The latest intrusive thought that I can’t seem to shake involves buying a boat and learning how to sail it. But it doesn’t end there. Sure, I’d start with reasonable objectives like becoming proficient at handling the boat in the environs of the Santa Barbara coast, and then progressing to day trips (and eventually overnighters) to the Santa Barbara Channel Islands. After that is mastered, an excursion down the Mexican coast would ensue, and ultimately . . . blue water sailing and a tour of the South Pacific. Pretty heady plans for a guy that hates to sail, no?

Now, part of this concept involves getting my beautiful African American girlfriend onboard, literally and figuratively. This will be a challenge as she can’t swim and is quick to remind me that her people’s first foray into transoceanic voyages didn’t turn out so well. Adding to the fun of a two-person crew in the middle of the Pacific is a captain with a golf ball-sized tumor in his heart that could render him dead before his sailor hat hit the deck. Talk about excitement!

I’m doing my best to beat down this notion before it develops legs. I keep focusing on how much I hate sailing. And on my chemo treatment schedule. And on my susceptibility to motion sickness. And on how I hate to be wet and cold. And on . . . what a romantic concept!!!

Potpourri

Three weeks ago this morning I awoke with an infusion pump connected to the port installed under my skin near my collar bone. This has been a tri-weekly occurrence for the past six months to which I am well accustomed. What transpired next – the pissing of blood – was completely unexpected however. Oh, the joy . . .

My first thought was – let’s see – nobody knows about this – what say we just keep it under our hat? I mean, what good could possibly come from mentioning it to the medical staff during the pump decoupling session that was scheduled for later that morning? Well, despite such flashes of brilliance, I often succumb to doing the “right” thing. And that morning was no exception. So I mentioned the event and that led to the collection of a urine sample.

The following Monday I received a call from the LA doctor’s office informing me that my urine tested positive for infection. Not surprisingly, this was incorrect information as the test simply revealed the presence of blood (which I already knew) . . . but no evidence of infection. I continue to be amazed that these people are able to dress themselves each morning.

A follow-up urine test was performed the following week in SB with the same result – blood in the urine, no infection. Were the ureteral stents to blame? That necessitated a trip to the urologist, who examined an x-ray of the installation and said no need to exchange the stents – they look fine and still have at least another half year of utility. So that was good news . . . I think.

About this time I had a mid-cycle blood test performed. Remember the muscle soreness that I experienced two cycles ago due to elevated “CPK” levels? At that time my CPK level was 329 (normal range 25 to 195) and it delayed chemo round #7 by one week. Okay, so this time the CPK reading was 3,850 (three thousand eight-hundred and fifty) or twenty times the upper limit of the normal range. While the SB urologist apparently did not find this particularly alarming (Cecily and I were sent on our merry way after having discussed this with him), when we arrived home the phone rang. It was the LA oncologist’s office in a panic, requesting that I go to the emergency room immediately for hydration and to have the ER doc call the LA doc after getting me hooked up to the IV. So back to Santa Barbara it was. And when the SB doc phoned the LA doc, the LA doc insisted that I be admitted to the hospital for overnight hydration. This of course led to the obligatory two-night stay. Oh, the joy . . . They finally released me (at my insistence) last Saturday morning with a CPK of 700.

Anyway, back to the point of this blog, which if I recall correctly is to keep interested parties advised of my progress fighting cancer. I had a CT scan performed this past Monday at the usual six-week interval. I received the radiologist’s report on Wednesday and the doc hadn’t even bothered to measure or list one single dimension! What a slacker. I phoned the clinic to express my displeasure. An addendum was prepared the following day with all appropriate dimensions measured and listed. The upshot is that over the last eighteen weeks the tumors have shrunk an average of 20% in lineal dimensions – and because volume is proportional to the cube of lineal dimensions, this means an average 50% reduction in volume. My SB oncologist characterized the results during yesterday’s appointment as “outstanding”.

But the chemo is certainly taking its toll. It's like volunteering to be inoculated with the swine flu every three weeks. A discussion with the LA oncologist’s office revealed that the three-week cycle is the most aggressive that’s allowed under the clinical trial protocol and that the cycling can be as infrequent as every seven weeks (now they tell me). So my current plans are to reduce the frequency to about six-week cycles or so, but I haven’t discussed this with the LA doc yet. Oh, the joy . . .

I’ll close this post with an anecdote that occurred before Father’s Day when both sons were staying at the ranch. I had just completed round #7 and was continuing my search for something to address the nausea. I was trying cannabis again at that point. I get about 100 music stations on XM radio and was listening to them all. From country western to bluegrass to whatever, they all sounded great in my altered state. Taylor and Cecily were begging me to keep changing stations, and Brandon was in another room at the computer doing online research. I finally stopped on an Isley Brother’s song from the early ‘70s, and was surprised at the use of distortion on the guitar during the entire song. I remarked to Taylor (a good guitar player) that it had to be one of the first substantial uses of distortion other than the occasional Beatle’s song and every Jimi Hendrix song. Taylor thought about it for a moment and then dropped the bombshell:

“I probably wouldn’t even play guitar if it weren’t for distortion.”

Huh?!?! I’ve been involved with music since I was ten and was always melody driven in my musical interests. It floored me to learn that my youngest son was simply drawn to the art for the noise that could be produced. Oh well, just goes to show how out of touch one generation is from another.

Just about that time Brandon emerged from hibernation, his research session concluded, and asked:

“Dad, do you have any idea how much money you wasted by having two kids?”

Huh?!?! Which one would he have suggested I not have? His parting statement made it apparent he was referring to both kids:

“Biggest f*ckin’ depreciating asset on the face of the earth.”

And with that I began looking for the cannabis again. Oh, the joy . . .

Happy Father's Day

Three generations of Griffith men enjoyed Father's Day at the ranch yesterday. Brandon's off to law school, Taylor's off to college, and Dad and I are off to . . . well, who knows . . . but we certainly aren't in any hurry.

Chemo deferred.

The phone rang last Wednesday evening, just about this time. It was from a nurse at the oncology center in LA.

Paul: “Hello?”
Nurse: “This is [name redacted] from Dr. [name redacted]’s office. I’m glad we caught you in time.”
Paul: “Hi. In time for what?”
Nurse: “Don’t drive down here for your chemo tomorrow. You have to wait at least another week.”
Paul: “Why?”
Nurse: “Your blood test results are out-of-bounds.”
Paul: “Is it my iron?”
Nurse: “No –your CPK level is too high.”

My CPK level? How could that be? I haven’t eaten at a California Pizza Kitchen in almost five years.

Paul: “What’s a CPK level?”
Nurse: “Just a moment.” (Discussion ensues with someone in background.) “It’s a muscle enzyme.”
Paul: “What was my reading?”
Nurse: “Three Two Nine.”
Paul: “3.29?”
Nurse: “No. Three Hundred Twenty Nine.”
Paul: “What’s the normal range?”
Nurse: “24 to 195”
Paul: “Hmm. My muscles have been sore.”
Nurse: Speaking with someone in the background again -- “He’s experiencing muscle pain.”

Now, to me anyway, there’s a big difference between pain and soreness. But I’ve come to learn that nuances that seem important to me don’t always seem to resonate with medical personnel. I decided not to drill deeper into the issue of soreness versus pain.

Paul: “So what do you want me to do?”
Nurse: “Repeat the blood test in a week and we’ll go from there.”
Paul: “What if the parameter is still out-of-bounds?”
Nurse: “Then you’ll have to wait another week and repeat the blood test again.”

So I’ve enjoyed a one-week mini-vacation from the tri-weekly chemo regimen and I feel spectacular! The best I’ve felt in a year. I just received the results from yesterday’s repeat blood test: my CPK level has fallen to 56. So the vacation is over and it’s back on the chemo again for 24 hours tomorrow and Friday. Trabectedin – it does a myxoid liposarcoma body good.

Beating down them tumors.

I finally received the radiologist’s report regarding last Thursday’s CT scan. As usual, the radiologist ignored the documentation protocol requested by the administrators of the clinical trial in which I’m enrolled. So although that makes the tracking of dimensional trends more difficult than it should be, I’m still able to compile and reduce enough data to shed some light on the situation.

This time around, the radiologist provided two dimensions (one longitudinal and one transverse) for three of the four tumors larger than 1 cm, and one dimension for the fourth in that size range. (Although the cardiac tumor is also larger than 1 cm, sizing is not provided as it cannot be easily measured because of its dynamic behavior.) Following is the updated graph, with additional observations below:

Over the past twelve weeks, the following shrinkages have been observed (average of known dimensions for each tumor):

Abdominal Tumor: 7%
Gluteal Tumor: 18%
Spinae Tumor: 24%
Lung Tumor: 13%
Overall Average: 15%

So overall average tumor shrinkage has been slightly better than 1% per week. Assuming that trend holds, it would appear that these puppies might disappear altogether after about 100 weeks of treatment. Can I tolerate two years of chemo? For all the tea in China? For all the cannabis in Jamaica? Thailand? Stay tuned . . . we’ll find out. Chemo Round #7 begins tomorrow . . .