Brain Tumor Journey

Brain Tumor Journey
And Why I Am So Grateful,
To So Many, To Be Alive

By Tom H. Foote

Find this page at:
http://footeworks.us/tumor
--and feel free to borrow from it,
and share it with friends.

DRAFT - Last edited 03/29/2012

Please send any corrections, concerns, or comments,
to me at:

tom@footeworks.us

Thank you. --Tom

Contents

1. Why this Page?

2. Tumor Images

3. Surgical Miracle--and, So Many To Thank

4. Radiation Treatments

5. Editorial

U.S. Health Care System:
Broken? Deadly?

6. Second Surgery

    Reconstruct my skull and reseat my left eye. This
    section is under construction. Content here remains
    tentative.

7. Update of How I am Doing

8. Links to Resources
on Cancer Care, Research, and
Health Care Reform

1. Why this Page?

I've prepared this page because many seemed genuinely interested in this journey (including many in several waiting rooms that I've enthusiastically "taken over" for my "presentations"). But to be fair, I too, have become fascinated (and perhaps, a little carried away) with all that keeps unfolding--the challenges, the technologies, the rich human stories. Increasingly, I've been bursting at the seams, to write and talk about it with interested people like you.

. . .I am now certain that telling my story (and, more important, learning the stories of others--especially those worse off than I) can be therapeutic, even life-changing. . .

Second, some say, "When dealt a lemon in life, make lemonade!" In fact, many experts (e.g., the late Norman Cousins) say, to speed healing, engage deeply in activities you love. Have fun with them--and, with people who share that love. Laugh a lot. (I have done all that--with this web page, and elsewhere--and, it has made all the difference.)

Third, this page has immediate practical value. When I log on to cancer support groups, many of them ask: "Tell Your Story Here." Now I can just type the link to this dynamic page--while I improve it over time. (Similarly, I can just email the link to friends who've expressed interest.) After many wonderful encounters, I am now certain that telling my story (and, more important, learning the stories of others--especially those worse off than I) can be therapeutic, even life-changing. (See survivors' stories here, here, here, and here.)

Fourth, perhaps the most important reason for doing this, is that the people discussed below have helped give me so much--indeed, a new life. Mere thank yous, repeated ad nauseam, just don't cut it. They (you?) deserve lots more. While this still falls far short of all that I owe, it's a start--that could lead to even crazier things.

More precisely, this journey has fired me up. It's given me hare-brained thoughts of, perhaps, shaping this into an article--or, even using it in health care reform work.

. . . the people discussed below have helped give me so much--indeed, a new life. Mere thank yous, repeated ad nauseam, just don't cut it. . . .

Whatever reasons moved me, I hope the following moves you to please consider further supporting cancer care and research--and, perhaps, even joining the much larger fight for health care reform--for all of us.

I wish us many victories.

(To that end, please see the "Editorial" and links below.)

Love you all.

Tom

2. Tumor Images

After months of seeing a slight bump on my left forehead, and excess tearing in my left eye, my pillar, Josie Gonzales, and our health professional friend, Chet Manalaysay, finally succeeded in getting this lug to see a doctor.

Circa March 20, 2008, Dr. Matthew J. Soff (Chet's friend) and other specialists in Broward County, Florida, had hundreds of CAT and MRI images taken of my "Tumor 2008"--from which, I've selected the following (perhaps the ugliest?).

Click on the images to enlarge them:
Hole that "Tumor 2008"--a (quite nasty) "radiologically induced meningioma"--had eaten in my left forehead.	Same hole that "Tumor 2008" had eaten in my left forehead--plus thinness in my right forehead caused by "Tumor 1961."	"Tumor 2008" pressing my left eye inward and downward.	View of "Tumor 2008" involving my brain, and emerging from my skull.

For the Adventurous: "Movie Mode"

To automatically move through nearly 2,000 similar images of me, in "Movie Mode" (also called "Cine"), click here to download and save a huge (120 mb) exe file. (Remember where you save it. It took me about eight minutes to download this through a "fast" cable connection.) Then find the file on your PC, click on the file name and watch it all. (To pause it, hit your Pause key. To resume it, hit your Spacebar. And, to end it, hit your Esc key.) Careful. This works best on a fast Internet connection, and, a fast computer. Finally, while I happen to find this "movie" to be amazing, some think I also have weird tastes. (Those with weak stomachs should probably just skip this.)

Pre-Op MRI Images Report (Excerpts)

Exams: . . . BRAIN W-WO CONTRAST

Using spin echo technique, fast spin echo technique, and fat suppression technique, MRI of the brain was obtained in the axial, sagittal and coronal planes with and without Gadolinium.

There is a left supraorbital mass that appears extraconal arising superiorly involving the left frontal bone in the left frontal extra-axial location with associated marked vasogenic edema involving the left frontal 1obe.

The lesion is 7 x 7 cm. in size in widest diameter. The optic nerve appears unremarkable. There is no enlargement to the orbital musculature. On the gadolinium images there is diffuse enhancement to the lesion except for a focal area of hypointensity that may represent an area of necrosis. There is no evidence for infiltration or spiculation to the subcutaneous scalp fat. The corpus callosum is displaced, however the corpus callosum appears intact. There is no evidence for ventriculitis. There is evidence for dural tail sign. The brainstem is unremarkable. The brachium pontis is unremarkable.

IMPRESSION:

THE LESION DESCRIBED ABOVE MOST LIKELY REPRESENTS EITHER A LARGE MENINGIOMA VS. HEMANGIOPERICYTOMA VS. SARCOMA. THE LESION IS NOT SUSPECTED TO BE AN INFECTIOUS PROCESS. THERE IS ASSOCIATED VASOGENIC EDEMA. CLINICAL CORRELATION IS NEEDED.

** Electronically Signed . . . on 03/21/2008 at 1718 **

3. Surgical Miracle--and, So Many To Thank

In my opinion, during six special hours on the evening of June 2, 2008, neurosurgeon, Dr. Jacques J. Morcos, of the University of Miami, (and the others helping him), achieved nothing short of a miracle. They kept this bear of a patient alive while removing a massive, nasty, 47-year old, tumor from his brain, optic nerve, and forehead. (Click to enlarge the last two pictures above, if you haven't yet.) I owe them all (and my maker), my left-eye vision, my continued ability to think and function--indeed, my very life. (Just how do I thank them?)

. . . I owe them all (and my maker), my left-eye vision, my continued ability to think and function--indeed, my very life . . .

Huge thanks also go to my very much loved savior, Josie Gonzales--and, my California-based family members: my hero of a brother, Tim Foote, and, my amazing aunts Jonne Lutz and Kathe Petersdorf--for being at my side here in Florida--to comfort and protect me (especially when incapacitated)--and, to keep me laughing (and, out of trouble).

Big thanks also go to cousins John Beach and Breck Lutz, for their substantial roles in helping Josie and me at every turn--and, to John's friends at inAssist (Johanna Alvarez, Brad Serkin, and Scott Speranza) for helping us with the seemingly endless, sometimes life-threatening, bureaucratic torpedoes that so-called "health care systems" kept firing at us.

We are also grateful to Dr. Steven Brem, Aileen Staller, RN, and others, of the amazing H. Lee Moffitt Cancer Center & Research Institute, University of South Florida, Tampa. They examined me on short notice, and heroically agreed to do the surgery, in the wake of the University of Miami's cancellation of my first surgery date.

Finally, great thanks are certainly due other doctors, nurses, technicians, family members, friends--and surely you--as in these additional wonderfully helpful people who come to mind (listed in roughly alphabetical order):

Brian and Kathy Back, cousins Curt and Tony Beach, Ray and Fernanda Bento, Don and Gerry Bohning, Ray Capper, Tom and Jan Collins, Don and Peggy Dean, David Dennis, Alexys Diaz, Sister Leonor Esnard, step dad Leon Franklin, Dianah Greenlees, Dr. Roberto C. Heros, cousin Keeli Hurley, Dr. Steve Jenner and Carol Klein, Marianne Kendall, Dr. Candy Lacey, Carlos and Mark Lama, Dr. Nancy Maldonado, Carol Minikwu, cousins Greg and Jeff Oveland, Dr. Frank Palermo, Dr. Guillermo Pasarin, uncle Pete Petersdorf, Dr. Joanne Preston, Dr. Beatriz Robinson, much-loved sister Kathie Taylor, Dr. Steve Thompson, and Zachary Williams. [Puhleeze let me know if I've left anyone out.]

Josie and I just could not have made it this far without the calls, cards, prayers, and tenacious help of so many of you. We can never thank you enough.

4. Radiation Treatments

Late July, 2008, Dr. Hoke Han and his staff, began my extensive radiation treatments--to kill whatever tumor remnants remained after surgery. (Carefully developed photon beams shot from the large "Varian Clinac" machine, ionize and destroy the tumor cell DNA, thereby, preventing those cells from replicating. Learn more about this process here.)

. . . photon beams . . . ionize and destroy the tumor cell DNA, thereby, preventing those cells from replicating. . .

Dr. Han and Dell Deligero used a wealth of computer and other technologies to help plan the number, intensity, and beam angles of my 33 (week day) treatments. I thank Dr. Han, Dell, and all who have helped them, for that plan, and its successful execution (thus far!)--and for the following Pinnacle software computer screen captures of my skull. (Note that the far right image here shows the five beam angles used on me.)

Again, click on the images to enlarge them:

Other stars helping with my radiation, include:

Dr. Alfred Brandon, Anette Colon, Luis Herrera, Dinorah Lopez, Donna McCorkle, Maria Schmidt, Hortensia Sueiras, Bill Wheatle--and, drivers Martin Gonzalez, Sandra and Susset Llanes.

Josie and I thank you all.

MRI Images After Tumor Removal and Radiation--and, Before Skull Reconstruction.

Again, click on the images to enlarge them:

MRI Delray Post-Op 10-13-08 Se1-Im3 w Blue.jpg (467589 bytes)

MRI Delray Post-Op 10-13-08 Se4-Im13 w Red.jpg (458552 bytes)

MRI Delray Post-Op 10-13-08 Se6-Im16 w Green.jpg (431303 bytes)

Good news: At our 10/24/2008 appointment, our surgeon, Dr. Morcos, said that the post-op MRIs from which the above three were taken, looked great.

5. Editorial

DRAFT - 03/29/2012

U.S. Health Care System:
Broken? Deadly?

By Tom H. Foote

While the U.S. health care system has numerous strengths, many argue that it is broken--even deadly. In fact, the U.S. is the only industrialized country without universal health care. Nearly 47 million Americans are uninsured--while another 25 million are underinsured--most unaware of it. (Some call it "The Pay or Die System.") Moreover, a Harvard study finds that medical bills are the leading cause of bankruptcy in the U.S. (Countries providing universal health care, often show very few, or even zero, medically related bankruptcies. See interviews here.)

. . . In short, our system is one of the most wasteful and inefficient . . .

And, some estimates indicate that as many as 100,000 Americans die each year due to completely avoidable medical mistakes. Furthermore, while the U.S. health care expenditures are the highest (by far) of any country, paradoxically, we suffer many poor health outcomes, as indicated by remarkably low rankings on many international health care indices. In short, our system is one of the most wasteful and inefficient.

. . . But we had to fight for it at every turn--because we could. (Many can't. What happens to them?) . . .

I am abundantly grateful for the excellent care I have received at critical points along this journey. But we had to fight for it at every turn--because we could. (Many can't. What happens to them?)

Above all, we fought because we quickly learned, we had to become our own biggest advocates--and, because we never could live with the alternative. (Amazing how the sudden denial of a scheduled brain surgery, like the cocking of a shotgun, can sharpen one's commitment.)

Above all, we fought because we quickly learned, we had to become our own biggest advocates --and, because we never could live with the alternative.

To be fair, we won the important battles quite often because of the guts, professionalism, and kindness, of the extraordinary people discussed here. (Without them, I might not have survived.)

. . . Amazing how the sudden denial of a scheduled brain surgery, like the cocking of a shotgun, can sharpen one's commitment . . .

But is that the best we can do? No. Together, we could help fix our health care system. Together, through struggle, donations and political action, we could reduce the completely avoidable suffering and deaths of hundreds of thousands of our citizens. Indeed, the ones we save could be you and me. No?

. . . But is that the best we can do? No. Together . . . we could reduce the completely avoidable suffering and deaths of hundreds of thousands of our citizens . . .

For places to go to learn more, and to help, see links below, Wikipedia detail here, NPR series here, or just Google "health care reform" here.

Tom H. Foote loves the life he's been given--and, the people in it--especially after having survived two major head tumors, 47 years apart. Tom teaches, consults, writes (a little)--and, laughs (lots!). Contact him at: tom@footeworks.us.

6. Second Surgery

Reconstruct my skull and reseat my left eye. Perhaps done jointly by Dr. Morcos, and other experts.

[Content here remains tentative.]

7. Update of How I am Doing--as of: Wednesday, April 29, 2009

Dear valued family, friends, and others:

Overall, I remain abundantly grateful to so many, as I continue healing well. I do remain eager to repair my skull, put the helmet away, and get "back on the block" in a more active life style.

A bare-bones summary of recent appointments--all of which went well:

April 1, 2009, Bascom Palmer Eye Institute, Univeresity of Miami: Dr. David T. Tse (re: orbit, and seating of left eye) He and his staff examined me briefly. If needed, he remains eager to help Dr. Morcos with the reconstruction surgery.
April 1, 2009, Bascom Palmer: Dr. Timothy G. Murray (re: dark spot on left iris) He and his staff examined me extensively, took photos, and dictated a report.
Mar 20, 2009, Bascom Palmer, Dr. Craig McKeown, He and his staff examined me extensively, and dictated a report.
February 24, 2009, Dr. Hoke Han, and staff, examined me in a follow-up regarding the 33 radiation treatments I had, starting late July, 2008.
February 20, 2009, Hollywood ophthalmologist, Dr. Scott C. Cardone examined me extensively, dictated a report, and scheduled the above appointment with Dr. Craig McKeown. More precisely, after finding nothing on either retina, Dr. Cardone said that apart from my double-vision (and the need to track a tiny dark spot on my left iris), my eyes are fine. (Still no prescription glasses, at age 59!) He feels that any thoughts on surgery to the eye should wait until after Dr. Marcos' reconstruction of my skull--just to first see, how the eye settles. This makes sense to me.

As I reported above, at our 10/24/2008 appointment, our surgeon, Dr. Morcos, said that the post-op MRIs from which the above three were taken, looked great. (And he, Dr. Han, and our friends at their offices, all liked this web page.)

My treated forehead area has settled well, and my skin there has returned to its natural color. I have had no pain (and no seizures!). I do have numbness around the whole tumor area--and, some trouble, at certain head angles, with coordinating my left eye vision with the right eye's (resulting in diagonal double vision at those angles). That said, I remain most grateful that my left eye vision remains clear and coordinated with my right eye, at my most-used viewing angles, most of the time. (Again, thank you Dr. Morcos!) I still wear my way-cool helmet (with stickers on it!) whenever I go out. (This recently prompted some wonderful questions from a curious young boy who approached me at a Christmas party. Ask me about it the next time we talk.)

We now look forward to what Dr. Morcos believes are the next steps toward my skull reconstruction.

Yes, my road to recovery has been full of miracles--and, "little bumps." But we remain abundantly grateful--even to our insurers--especially our insurers. And, again, when it comes to giving thanks for my vision--and, indeed, my very life, we remain "hopeless bankrupts" to many, many others--especially those discussed here. Above all, we remain grateful for their relentless caring--and, for the miraculous outcomes--surely related to that caring.

And then, there's that life-giving force, that I think lots more about, since the miracle of my waking up after my June '08 surgery: