Some thoughts about meeting a new cancer patient...

One of my biggest peeves
About this stupid disease
Is when people don't know what to say
But they feel they must say something anyway.

I can only speculate as to why
The most frequent talk is about knowing someone who died
I guess it's an attempt to sympathize,
But in my eyes
It made it difficult to want to keep talking,
To shut myself out from that person,
Knowing well that it wasn't intended that way.

And then the situation worsens,
And they say they understand;
I wish they'd go away
Because my response used to be ill planned.

I'm guilty of becoming enraged at people who say "I'm sorry".
Perhaps you should consider adding "to hear that".
When I hear "I'm sorry" by itself, I take it as expression of guilt
Despite everything I know about good intentions.

Oh, that sucks, I lost the rhyme,
And I'm getting tired and running out of time.
But I really wanted to relay,
Be very careful what you say
When talking to a recently diagnosed friend
Because often this disease feels like it's the end.

There will be more on this later,
But for now I must rest.
I don't mean to sound like a hater,
Some of this has been stated in jest.

Short Summary - more to come

Today marks the end of the second round of Temodar (wash out phase begins tomorrow), tomorrow marks the end of Avastin treatments (which began in May of last ear) hopefully forever. And I'm already finished with my second round of radiation. It's been a long, tiring road, but it's just the breathtaking beginning of an amazing, awakening adventure.

The Importance of a Good Rapport with Your Medical Team

Hopefully most of you are in better shape than we cancer patients and only have one or maybe two doctors to see on a regular or occasional basis, but for those of us who see specialists seemingly every day (not just us but everyone really), it is absolutely crucial that the doctors/therapists/dentists/whoever it may be are people (key word - people) with whom you can establish a good rapport. Communication between the patient and the "treatment specialist" (or whatever you want to call them) is one of the most important skills that both must have. Moreover that skill must translate to the patient's care providers (for example in my case, what I mean by that includes primarily my immediate family members).

With technology constantly improving our abilities to communicate, I find it a very valuable tool to integrate into my personal care. I find it very helpful to the medical team if I know my body as well as if not better than they do, and therefore I keep track of a lot of pertinent things. I use spreadsheets to monitor sleep patterns to help my Neurologist, I also use them to monitor my blood pressure (especially since it has been particularly high lately and heart disease runs in my family). I don't know how truly accurate/useful they are, but I bought an automatic blood pressure monitor so that I could monitor myself at home and keep my doctors informed (it is important to me that my doctors like regular updates on these seemingly small details). Another spreadsheet tracks my occupational therapy exercises that I (am supposed) to do every day, which I use to both make sure that I do my homework and comply with the therapist... it also keeps me motivated, especially when I find myself in a rut and/or overdoing it. All of these tools are important in establishing a good rapport with your doctors and such, and also they are useful in helping to get to know yourself better, both physically and emotionally. At least they work for me... you may have to figure out what works best for yourself. However, at the same time, you must understand that the doctors and you must be able to come to a mutual decision about your care, and neither one should have total control. Essentially, I feel it is important to be able to say no in spite of the fact that the doctor may disagree with your decision and (hopefully) feel that it is in your best interest to do what is asked. Sometimes saying no is the best decision. I could have been paralyzed back in 2005 had I not said no (this is an extreme case, but nevertheless an important point).

Anyhow, I'm off my soap-box for today. I wish you all the best in the near future... I will be continuing to take things day by day, minute by minute. Again, I ask that you please email me at thecancerousot@gmail.com if you'd like me to answer some questions. I'll hopefully find a lot of repeat questions that I can address to everyone at the same time, but also I'd love some questions that may be more "involved"... don't be afraid to ask anything... I won't share who asked what unless you tell me to do so.

Until next time (and after obviously), take care!

Radiation Graduation

Good Morning Readers!

So I graduated from Radiation on Wednesday! What a ride it was! From the stresses of driving (riding) back and forth between cities receiving poison at one place, destructive "aerosolized" as I like to call it (albeit incredibly accurate aerosol) radiation at another, taking daily pills of poison, and being a needlepoint project for the nurses at both, I'm so glad to have a bit of a "break" (still on the daily chemo - Temodar, with another injection of Avastin on Tuesday). Since Wednesday I've kept very busy, meeting a new endocrinologist who seems to enjoy my humor and respects that I'm very candid and straightforward... I think we will get along very well. I've also got appointments to begin Occupational Therapy next week, as well as appointments with several other doctors. It's been pretty exciting and a great feeling to know that I get to relax but also keep myself busy enough to not go crazy with boredom. Unfortunately, Gambit has been very sick the last few days, so he has needed his space... I miss his normal personality, but hopefully he'll get better soon since he saw the vet yesterday.

Anyhow, I have a small request from you all because some of the questions I think have already been answered in the blog, as well as I have answered the same questions from most of you. So if you could help my fried brain out a bit, I'd love to address all of your questions, but could you please email me them at thecancerousot@gmail.com

Thank you for helping me out! Look for another update soon!

Enjoy the Super Bowl!

Optimistic

Eight weeks have gone and passed;
I wasn't sure if I would last.
But the time has come to raise the mast,
Sail along and continue this blast
Of a ride my life has been.
I believe that news will be great,
But a few months I have to wait,
And during that time I appreciate
The value of patience and an optimistic state
Of mind.
I cannot fall behind
I remind
Myself to find
All the beauty in this seemingly cruel world
Into which we've all been hurled.
Like a flag coming unfurled,
My heart becomes twirled
With thankfulness and gratitude
That I have a positive attitude
And that I'll travel to any latitude
To keep on being that dude.
This radiation treatment is coming to an end,
It made my body contort and bend.
A painful round each day would send,
But I was greeted each day with a smile from a friend.
The people I met who have taken care of me,
Who have always seemed to want to be
There doing their best to make us tumor free...
I will leave here optimistically.

That was kind of a tough rhyme to throw together, but I've been inspired by you, by everyone who has shown support for my family and for me. For awhile I truly couldn't figure out what I was putting myself through this for, but I think I did it to set an example for others. There is always hope. Every choice you make is important and should be with good intent. I am the t-shirt guy who likes to bring humor each day to treatment, and I think one of my sweatshirts may have upset some patients, "my cancer is rarer than your cancer." I wasn't thinking when I wore that one, except about myself and receiving attention, and I apologize to the patients who may have been upset by it. My goal is to approach living with cancer with humor, optimism, and yes indeed sarcasm (that is part of who I am). I look forward to many many more years of accidental distaste, but I hope to fail miserably in that department and continue to teach optimism, patience, how to laugh in despair, and to never give up.

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A Bit "Jacked Up"

It's almost 4 in the morning and I can't sleep,
One day at a time was the pace I planned to keep;
But now the radiation count is down to three,
And from then on I'm at God's mercy.

I have yet to say a prayer for myself,
But I have been fully focused on my health.
I feel that the job is not just divine,
But instead I've been given the resources to do mine.

And I know that I've been sent help from above,
From people I know and don't know sending their support and love.
My heart is full of undying gratitude;
You've helped me maintain my positive and optimistic attitude.

This blob in my head will soon be beat,
My mantra is to repeat
That no matter what happens in the end
I took advantage of the resources that God did lend.

My spirit is stronger than ever,
I've made a contract I cannot sever.
I'll continue to fight, I'll finish my part,
I haven't wasted a beat of my heart.

These obstacles were placed in my life to change me,
To make me the best person that I can be.
They've given me the opportunity
To celebrate life and all its beauty.

I'm sending this message to all of you
That there is nothing that you can't do;
If you give it your all, and still you fail,
It's a victory because you've left a trail.

Beaten down by the trifecta of tumor destruction,
I've stood myself up to conquer this cranial corruption.
Poisons and protons brutally beat at my brain,
Yet still I maintain.

Ready to finish this out, just three more days
A battle of endurance, a mental maze.
My body is stuck in a drug-induced haze,
But my mind is unclouded and through clear eyes I gaze

At the demon that once tried to take me down,
That tried to convince me I couldn't win this fight.
To that evil thought dressed in an appealing gown,
I'll have to pass, push away with all my might.

I will be fine.
My life will be mine.
And when it's time to resign,
I will be fine.

I'm going to miss this place in a few days...

Most days feel kind of like I'm sitting in an airplane, minus the part about traveling somewhere (well except when driving back and forth between Bloomington and home of course). A bit contained, my life is basically in the hands of (hopefully) experts of their profession. I am excited to be here, perhaps I'd venture to say lucky.

The crew in Bloomington couldn't have made me feel any better about the decision to receive treatment there. Their dedication to their work, their smiling faces, their appreciation of my t-shirts... what a great group of people. I will miss it when I'm no longer being treated here (not so much the crispy fried brains part, but obviously the people). Fortunately I've found an amazing Neurologist in Bloomington, which gives me an excuse to stop by for the occasional visit.

Just like the other people who have influenced and changed my life so much, my other doctors, my friends throughout the world (whether I've met them in person or not), I treasure and want to do everything to remember you all and keep you close to my heart. I hope that I leave behind similar sentiments.

You are all the best I could ask for.