Wednesday, March 16, 2011

Two Years

It's really unbelievable to think that two years ago this morning, I was sitting in Tastee Diner with Dan's sisters just a few hours after he passed away. It has been a long road.... one that is equally part devastating, enlightening, hopeful, scary and sad.

Two years. It's now been officially longer than Dan has been gone than he was in my life. That's weird. I think of that sometimes and realize how lucky I am to be so associated with Dan's memory for so many people. It was never hard to stand in the shadows of that big light he gave off. And I know that while days like today are difficult for me, I do not lose sight that people reach out to me. I hope that Dan's family and close friends receive the same, as it can be an isolating day.

One of the things that always struck me about Dan was his ability to be quiet & reflective during otherwise hectic times. I think back to the days spent at Hopkins when he received treatment. It was actually almost a social event, with Dan's parents, me and many friends who stopped by on their lunch hour or took time to spend the afternoon with us. While the rest of us chatted and caught up, Dan would sit there receiving chemo. Sometimes there were cupcakes. Sometimes the nurses came over to hear about all the Waeger babies and goings-on. People shuffled in & out to get coffee or food from the cafeteria.

I used to watch Dan and wonder how someone in such a vulnerable spot could be so himself. And the longer I watched, the more I realized that he spent most of that time sitting quietly with his thoughts- whether in the waiting room for a scan, getting blood drawn or sitting on the chemo deck. I never knew what we was thinking about and he never told me- was he scared? was he thinking about getting Rita's Italian Ice after the treatment? was he going over his last round of golf in his mind? or dwelling on happy memories? He was always deep in thought, and it never was the kind that made him upset or sad. It actually used to bother me that he didn't talk about his feelings much about cancer. He was as positive at home and behind closed doors than he was in front of others. And I always asked- how are you not going nuts all those hours we sit in the Hopkins? Dan just always said it was what he did to get by and keep himself focused. It was just how he dealt with everything, which I am sure also included taking care of all of us around him.

After two years, I understand him a little more. He was- day in & day out- dealing with a disease that could change in an instant. There was no time for fear- it would simply bury him. And not only did have to beat back a disease, but he had to fight hard to keep his every day life in tact. And he had to carry hope for so many- me, his family, his friends, co-workers and fellow survivors. Think about that- how many people get sick and go on disability? Dan took care of himself and all of us, and rarely asked for real help other than for a visit during chemo or to play in his golf tournament.

Those quiet moments were what he needed to re-charge, not just for cancer but for us.

I have learned many things about grief over the past two years, and am still learning. People like to say that time heals all wounds. Well, that is a really crappy and unfair thing to say to anyone who has lost someone. If that were true, than all of us would be thinking "What is wrong with me? Why don't I feel better yet?". Time passes- and that can be a cruel reminder and a relief at the same time. Last year, I felt the need to do something in the community to honor Dan on this day, so I visited a hospital and met with young adult cancer survivors. It was a relief in a way- to make it one year. To have survived that time. This year, it feels more appropriate to honor Dan in the way he dealt with things- quietly... to take the time to re-charge for me, and for cancer-related work.

That's the funny thing about time for me- it is both frozen and moving forward. In my mind, Dan will always be (almost) 27, wearing his Penn hat backwards, smiling and full of energy. But that is also sad for me. He will always be young and healthy. He is frozen in that moment, but has already missed so much- the weddings of close friends, the birth of a nephew and niece (with more on the way), the birth of his friends' children... his own wedding... his own children. I think about how he loved spring and would be excited to start golfing again and talking to his dad about playing soon. He would say his nephew Jack looks like him. He would be busy launching another scholarship program. He would be so proud of his brother-in-law's success and sad to see his nieces move to Cincinnati. He would be attending his niece's baptism this weekend and so excited to see her family from Bolivia. He would be talking to his other sister as her husband leaves for another tour of duty. He would be telling his mom he was alright and not to worry so much about him. And he would be going to Opening Day in few weeks with his friends. He would be dressed up in green tomorrow for St. Pat's, wearing whatever crazy beads or hat I gave him.

I know he would be proud of us- moving forward but keeping him in our hearts. But it hurts nonetheless. And it's ok to sit and be quiet for a moment. To remember and re-charge. I think it's kinda fitting now that Dan died the day before my birthday.... today is about honoring the past, and tomorrow is about the celebrating the future. For this moment, it is still ok to mourn.

Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum.

Bring out the coffin, let the mourners come.
Let aeroplanes circle moaning overhead
Scribbling on the sky the message He Is Dead,
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.

He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.

The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.

Wednesday, February 2, 2011

The Challenges of Surviving Cancer

Just wantes to share the voice of a young adult cancer survivor again as a reminder of what it means to live beyond treatment.

The Short Story

I suffered a mini stroke (TIA) this week as a long-term side effect of the radiation I received for brain cancer in 1996. (Stupid cancer.) I am fine right now, recovering and will be getting a battery of tests at the NYU Stroke Center next week. I have fortunately not lost any cognition or motor coordination. I have a slight speech impediment which should be self correcting and my overall health is just fine. I'm home with my wife and children and laying low for a while.

The Long Story

On January 23rd, I awoke with a mild speech impediment and within two days noticed that symptoms had not improved AND I was having trouble touch typing. On January 26th, I asked my staff if they had noticed a change and they all confirmed my worst fears – something neurological was impacting my daily functionality.

A call to my oncologist resulted in a fast track insurance pre-certification for an MRI w on January 30. The preliminary radiology report indicated a new tumor on my brain stem, the pons, specifically. An emergency visit to my neuro-oncologist on Monday the 31st confirmed the structure however the nature of my symptoms didn't seem to add up to the suggested prognosis.

It is now the general consensus that I did NOT have a brain stem glioma and that the radiologist who originally read the MRI scans was untrained in neuro-radiology. However, with this relief, I had a different set of challenges to deal with – I didn't have cancer. I had suffered a stroke, also known as a transient ischemic attack or TIA; a known side-effect of brain radiation.

My body is on the path to healing and recovering. Next week, I am going for a battery of tests at NYU on track to enter their Comprehensive Stroke Care Center for observation, evaluation and further monitoring. Seeing as how my TIA was not caused by traditional risk factors, it remains uncertain what direction the NYU team will recommend but I plan on adding this to the list of issues I get monitored for each year.

This is my fourth brain cancer scare over the past 15 years. In 2003 I began to experience bilateral ocular migraines which blurred my vision and in 2004 I contracted ocular shingles. No tumor. The in both 2007 and 2009 I went spontaneously deaf in my left and right ears, respectively. (High dose prednisone fully restored my hearing three months later) No tumor. I've also had a lung cancer scare which turned out to he pleurisy and a testicular cancer scare which turned out to be a hernia.

I'm still here and nothing is going to stop me from loving my wife and my children and being the one of the most passionate cancer advocates in the country. I think the takeaway from this is that when the doctor says "You're cured. Go home.", that's never the end of the story *especially* for pediatric, adolescent and young adults living, through and beyond cancer. I may still be disease free but I don't feel "cured" as long as I – and millions others – continue to deal with the consequences of treatment. Surviving cancer comes at a price. With all these billions going to fund more and more mostly necessary cancer research, where is the money for cancer survivorship?

Let this be a call to action to start funding survivorship now. Go out there, raise awareness, raise your voice and raise hell. Fund survivorship now because remission is not a cure. Support the I'm Too Young For This! Cancer Foundation and our partner organizations in serving the survivorship needs of our generation.

I hope I am the only one around who can wear a t-shirt that proudly proclaims, "Thank God it was only a stroke."

I am still here. You are still here.

This is why we fight.

Stupid cancer. Survivors rule.