It's over, for now anyway. No more daily, "zappage," as I call it. So what now? Well, I'm due for another dose of CCNU (http://www.chemocare.com/bio/ccnu.asp) today and then to check in with my Radiation Oncologist in three weeks, then my Oncologist in 5 weeks for an MRI to gauge the results of treatments to date and go forward.
It's kind of strange to say, but in some ways I'll miss my daily visits to the Cancer Center of Santa Barbara. Anne and I have nothing but positive things to say about the staff, the protocol, and the level of care that we received. I have formed attachments to the staff who are working to save my life, basically. I will miss my brief conversations with Ivan about his desire to get back into cycling (I'd like to believe I have something to do with that!), as well as my ribbing of Kim about her comedy material; both are warm, caring people who took an interest and sense of pride in my recovery, as did the entire staff. I don't know how they do it, frankly; they are professional people and yet they let themselves care on a personal level - extraordinary.
The only drawback of the treatments has been the attempt to do a slow, tapered reduction in my steroid (http://en.wikipedia.org/wiki/Dexamethasone) level, which has resulted in a roll-back of my physical progress in rehab by a good two to three weeks in my estimation. It is nobody's fault; the reason they call it, "Practicing medicine," is that nothing is exact and everyone's reaction's are individual depending on their physiology.
The level of frustration that the taper caused, however, and my inability to deal appropriately with same, has not been fun . . . for anyone in our family, I might add. I think the natural reaction is to take that frustration out on those closest to us because . . . well, I don't really know why that's the case and there is certainly no good excuse for doing so. A good indication of Anne's frustration level was apparent when I noticed a giant-sized bottle of, "Stress Formula Body Wash," on the bathroom sink this morning. I will try to improve my attitude and to stop needing to apologize for things that I say; no guarantees, but I will try!
Make it a great day.
October 23, 2007
October 21, 2007
The Choice
I think about cancer every day; about how I will beat it.
A friend of mine sent me this anonymous quote a few weeks after my surgery; it very clearly describes my philosophy on cancer and life:
“Our lives are not determined by what happens to us,
but how we react to what happens;
not by what life brings to us,
but how we react to what happens;
not by what life brings to us,
but by the attitude we bring to life.
A positive attitude causes a chain reaction of positive thoughts, events, and outcomes.
A positive attitude causes a chain reaction of positive thoughts, events, and outcomes.
It is a catalyst…a spark that creates extraordinary results.”
I'm always amazed when people say things like, "I can't believe how strong you and Anne are in the face of your fight." Lance Armstrong, in his first book, "It's Not About the Bike," had this to say:
"We have a choice both medically and emotionally. . . give up or fight like hell."
For us it's that simple. Giving up was never, and is not now, an option. I tell people who ask all the time that they have an active choice to make about being a victim or a survivor, and I do believe there is a specific moment in which you are conscious of that decision. If you choose to give up and believe you are a victim, you are - throw in the towel, forget treatment, forget hope, it ain't gonna happen without it! If we choose to live, to not only survive but to thrive, I believe we will.
Your steadfast belief in that survival decision will carry through your treatments, recovery and through the rest of your life with cancer. You have to, have to, believe it. As has been said, again by Lance Armstrong (who if you have not guessed by now is a personal hero of mine - more on that in future posts), "Cancer my leave your body, but it never leaves your life." Just because it never leaves your life, doesn't mean it controls your life, though. You have the power to decide how you will face the challenge. You have the power to live your life on your terms.
Never give up.
October 19, 2007
Fred the Tumor
When I was first diagnosed in 2001, my daughters were 10 & 7 years old. One of the toughest things for me was to attempt to let them know what was going in while not overwhelming them with information and thus scaring them. My wife, Anne, and I both felt, and continue to feel, that it is important to bring them along on this journey, to tell them the truth to the extent they can understand it in age-appropriate terms. They came to San Francisco for the initial craniotomy with Anne, my father and his wife, and visited me when I couldn't talk to them, let alone get out of bed yet. Looking back we remain convinced that we did the right thing - for us and them.
In order to try to explain what the tumor was, I wrote two poems; "Fred the Tumor," and, "What's a Seizure." I'm not sure who was helped more by the poems, them or me, but I'm so glad I did it:
Fred the Tumor
A while back I felt dizzy
My leg and arm got weak
So I went to talk to the doctor about it,
And asked her to take a peek.
They took a special picture,
That looks like inside-out,
It shows them what’s inside of me,
When all the lights are out.
The doctor said I have a tumor
That’s sitting inside my head.
She gave the thing a special name,
But I think I’ll call him Fred.
Fred is like a piece of fat
That lives inside my skin.
I wonder what he’s doing there,
And how he first got in?
We took another picture
That was really kind of neat,
And let my doctor look at Fred
So the two of them could meet.
But Fred was playing hide and seek,
Or so the doctor said,
So they put me in the hospital,
To look inside my head.
And when they did they saw him there
Some say sitting all alone,
They took a little pinch of him
And up my head was sewn.
The doctor says Fred’s an easy one
And he’ll soon be on his way,
So until he is we walk step by step,
Through each and every day.
We’ll sleep, we’ll wake, we’ll live and learn,
We’ll wrestle and we’ll play;
Fred is just a short-term guest
Your daddy’s here to stay.
What’s A Seizure?
Remember what I said to you
In the poem about Fred,
When I said my leg and arm got weak
And I was dizzy in the head?
There’s a name for all of that
And the doctors are real sure
That what made me feel so weak and weird
Is what they call a seizure.
A seizure is the way that Fred
Says, “Hey, remember me?”
They don’t hurt, and they don’t last
But I might look silly.
You might see my eyes get big
Like when I say Boo at night
Or you might see me sit down quick
If my leg does not feel right.
I promise I won’t quack or bark
Or dance and hop around,
But I may move in funny ways,
Or make a funny sound.
The doctor gave me special pills
To keep the seizures away;
They are really working well,
And I take them every day.
Until they’re gone, doc says don’t drive,
Walking’s good enough.
I really don’t mind it all that much,
‘Cause I get to see more stuff!
Seizures come and then they go,
I don’t know when or where,
But I do know there’s no need to fear
If you happen to be there.
The best thing you could do for me
Is simply hold my hand,
In a moment or two I’ll feel just fine,
And be back to normal again.
In order to try to explain what the tumor was, I wrote two poems; "Fred the Tumor," and, "What's a Seizure." I'm not sure who was helped more by the poems, them or me, but I'm so glad I did it:
Fred the Tumor
A while back I felt dizzy
My leg and arm got weak
So I went to talk to the doctor about it,
And asked her to take a peek.
They took a special picture,
That looks like inside-out,
It shows them what’s inside of me,
When all the lights are out.
The doctor said I have a tumor
That’s sitting inside my head.
She gave the thing a special name,
But I think I’ll call him Fred.
Fred is like a piece of fat
That lives inside my skin.
I wonder what he’s doing there,
And how he first got in?
We took another picture
That was really kind of neat,
And let my doctor look at Fred
So the two of them could meet.
But Fred was playing hide and seek,
Or so the doctor said,
So they put me in the hospital,
To look inside my head.
And when they did they saw him there
Some say sitting all alone,
They took a little pinch of him
And up my head was sewn.
The doctor says Fred’s an easy one
And he’ll soon be on his way,
So until he is we walk step by step,
Through each and every day.
We’ll sleep, we’ll wake, we’ll live and learn,
We’ll wrestle and we’ll play;
Fred is just a short-term guest
Your daddy’s here to stay.
What’s A Seizure?
Remember what I said to you
In the poem about Fred,
When I said my leg and arm got weak
And I was dizzy in the head?
There’s a name for all of that
And the doctors are real sure
That what made me feel so weak and weird
Is what they call a seizure.
A seizure is the way that Fred
Says, “Hey, remember me?”
They don’t hurt, and they don’t last
But I might look silly.
You might see my eyes get big
Like when I say Boo at night
Or you might see me sit down quick
If my leg does not feel right.
I promise I won’t quack or bark
Or dance and hop around,
But I may move in funny ways,
Or make a funny sound.
The doctor gave me special pills
To keep the seizures away;
They are really working well,
And I take them every day.
Until they’re gone, doc says don’t drive,
Walking’s good enough.
I really don’t mind it all that much,
‘Cause I get to see more stuff!
Seizures come and then they go,
I don’t know when or where,
But I do know there’s no need to fear
If you happen to be there.
The best thing you could do for me
Is simply hold my hand,
In a moment or two I’ll feel just fine,
And be back to normal again.
My name is Tom
Welcome to my Blog. It has been created to keep friends and family updated about my family's cancer challenge. Be sure to read the latest postings, as I will try to update them as often as possible - no great words of wisdom or guidance to be sure, but you may find something helpful.
Probably the easiest way to do introduce myself is with a timeline of both the cancer and treatment and then fill in the story from there - so here goes:
November, 2000 – First of five focal seizures prior to surgery.
January 19, 2001 – Initial diagnosis of a “Mass” in my left frontal lobe.
January 25, 2001 – Biopsy done at Cottage Hospital in Santa Barbara.
March 1, 2001 – Biopsy results back from Mayo Clinic confirming initial diagnosis of benign Oligodendroglioma Grade II in the left frontal lobe. In my surgeon’s words, “If you have to have a tumor, this is the one to have.”
April 2, 2001 – Successful craniotomy at U.C. San Francisco Medical Center to remove as much of the tumor as possible.
June 27, 2001 – Started my first round of chemotherapy, Temodar, at home; 12 more to go on a clinical trial through UCSF.
June 2001 through October 2005 – periodic MRI scans to monitor the tumor, all have been stable to this point.
November 2005 – MRI shows some activity and the recommendation from my local doctor and UCSF is to do another year of Temodar and continue to hold off on radiation, keeping the option open for the future. During this year, ending in October 2006, the tumor is held at bay by the treatment.
February 2007 – New mass is found on the right side thanks to careful monitoring of MRI scans. The consensus by my medical team is to try Temodar one last time.
August 2007 – No success with Temodar on new growth. It is determined that a biopsy is needed to confirm tumor type and a new treatment options.
September 2, 2007 – Successful biopsy done at Cottage Hospital in Santa Barbara with pathology reporting the new tumor is the same type, Oligodendroglioma, but one grade higher and more aggressive. Not as bad as it could’ve been, thankfully. Pathology confirmed by UCSF one week later.
September 12, 2007 – Six weeks of Conformal Beam radiation begins at Cancer Center of Santa Barbara in addition to Lomustine chemotherapy.
Probably the easiest way to do introduce myself is with a timeline of both the cancer and treatment and then fill in the story from there - so here goes:
November, 2000 – First of five focal seizures prior to surgery.
January 19, 2001 – Initial diagnosis of a “Mass” in my left frontal lobe.
January 25, 2001 – Biopsy done at Cottage Hospital in Santa Barbara.
March 1, 2001 – Biopsy results back from Mayo Clinic confirming initial diagnosis of benign Oligodendroglioma Grade II in the left frontal lobe. In my surgeon’s words, “If you have to have a tumor, this is the one to have.”
April 2, 2001 – Successful craniotomy at U.C. San Francisco Medical Center to remove as much of the tumor as possible.
June 27, 2001 – Started my first round of chemotherapy, Temodar, at home; 12 more to go on a clinical trial through UCSF.
June 2001 through October 2005 – periodic MRI scans to monitor the tumor, all have been stable to this point.
November 2005 – MRI shows some activity and the recommendation from my local doctor and UCSF is to do another year of Temodar and continue to hold off on radiation, keeping the option open for the future. During this year, ending in October 2006, the tumor is held at bay by the treatment.
February 2007 – New mass is found on the right side thanks to careful monitoring of MRI scans. The consensus by my medical team is to try Temodar one last time.
August 2007 – No success with Temodar on new growth. It is determined that a biopsy is needed to confirm tumor type and a new treatment options.
September 2, 2007 – Successful biopsy done at Cottage Hospital in Santa Barbara with pathology reporting the new tumor is the same type, Oligodendroglioma, but one grade higher and more aggressive. Not as bad as it could’ve been, thankfully. Pathology confirmed by UCSF one week later.
September 12, 2007 – Six weeks of Conformal Beam radiation begins at Cancer Center of Santa Barbara in addition to Lomustine chemotherapy.
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