New Normal

If there are two words I am tired of hearing used together they are "new normal".  Over and over (and over and over and over) in the cancer community you hear people speaking of getting used to the "new normal".  Let me tell you about what is supposed to be considered "normal" for me now that I am supposed to accept and get used to;

• Severe numbness and tingling in my arms and legs that has been present and not let up since February 2011.
• Frequent headaches of varying degrees.
• A blind spot to my right due to losing the vision in the lower right quadrant of both eyes.
• Walking into stuff on my right side due to said blind spot.
• Blurry vision that varies in degree of severity day to day.
• Having my right testicle discarded with the trash.
• 22 residual tumor masses in my lungs.
• Having to answer "no, I was not a smoker" in regards to those 22 tumors.
• Seizures and losing my right to drive for six months.
• Re-growing a liver with the 10% of my original liver they were able to keep.
• A 9" scar down the center of my chest/abdomen.
• A 12 1/2" scar on the back of my head.
• 6 titanium brackets holding a major portion of my skull in place.
• Short term memory loss.
• Fatigue.
• Major losses in strength/endurance.
• Short term memory loss. (Did I mention that?)
• Having people tell me I could have avoided cancer if I had only eaten/not eaten "_____" or done/not done "_____".
• Balance issues.
• Cognition issues.

I guess there is a plus side though.  I can rant and rave and complain all I want and if anyone complains about it all I have to say is "sorry, it's my 'new normal', you'll get used to it."

The Reaper Came Knocking

December 17, 2011.

Patient is unresponsive, heart rate is in the 20's...

One emergency craniotomy later I am here to say nice try cancer.

On December 28, 2010 I was diagnosed with cancer. After that day my main goal was to make it to December 28, 2011 to be able to celebrate my "new birthday". One year as a survivor/patient. One year and still going strong.

I almost didn't make it to that day and the celebration.

11 days earlier a newly discovered 9 cm brain tumor in the left occipital lobe very nearly kept me from reaching a very important milestone.

I had been experiencing some vision issues as well as increasingly worsening headaches for a period of a couple of months which lead me to seeking an appointment with Ophthalmology. After a field of vision test it was determined that I had lost my vision in the lower right quadrant of both eyes, leaving me with a blind spot. The speculation was that, worst case scenario, I had a tumor in the occipital lobe of the brain damaging the optic nerve and an urgent MRI was scheduled to be conducted within 48 hours. Thus began a whirlwind 9 day period.

• December 8, 2011: MRI of the brain.
• December 9, 2011: Results confirmed and delivered, a 9 cm mass is present in my brain.
• December 12, 2011: Consult with Neurosurgery, surgery scheduled for December 20, 2011.
• December 12, 2011: Consult with Radiation Oncology, a course of radiation therapy recommended for post surgery.
• December 15, 2011: A series of worsening headaches brings me to the ER.
• December 15, 2011: I "black out" and have no memory of any event until December 20, 2011.
• December 15, 2011: Admitted to ICU.
• December 16, 2011: Surgery moved to December 19, 2011.
• December 17, 2011: Vital signs take a dive, I become unresponsive and my heart rate drops into the 20's.
• December 17, 2011: Surgery becomes urgent and a left craniotomy to resect my tumor mass is performed this day.

Surgery was a success, but this latest obstacle set me back a bit more and gave me more hurdles to overcome. Prior to discharge day I was evaluated by speech, occupational and physical therapy to determine what services I would need in order to regain my abilities and whether I would be able to be discharged to home or to a treatment facility. With sheer will and determination I was able to prove that I would only need physical therapy and that I would be able to be safe and function at home. When discharge day arrived I needed to use a walker to leave the hospital, but I was able to walk out. It was a slow walk and a bit unstable, but I was walking.

And now to the present day.

After a few weeks with the walker I was able to transition to a cane, presently I use neither.

The vision loss is permanent but I am making adjustments and learning to accomodate for it.

With the help of an amazing physical therapist I am regaining endurance, coordination, balance and strength. I have a ways to go but I am making great progress.

So, to make a long story short, everybody gets knocked down. How quick are you going to get back up?

The Ugly Truth

I know I have been kind of silent the last couple of months in regards to my experiences but I will not apoogize for that. I have had the same thought playing in my mind the whole time, I have just struggled with the tone and the words to express it.

More than anything else since starting this blog many people have stated they have appreciated my honesty when speaking about my disease. Hopefully they will still appreciate it as my perspective has been shifting. For many months I found humor in what I am going through, laughter is the best medicine right? The thing is, I'm not laughing as much anymore.

The truth is, cancer is an ugly disease.

So often I hear "you're an inspiration" or "you're someone people can really look up to". If this is what it takes, I don't want to be a rolemodel, I don't want to be an inspiration. To be those things I have to be "the guy with cancer" and trust me, it is not all it is cracked up to be.

In the cancer community they talk about getting used to a "new normal". Personally, I liked my old normal. I liked not having toxic chemicals pumped into my body that will stay in my system for up to 15 years. I enjoyed being able to look in the mirror and not seeing a nearly foot long scar running down the center of my body. Being able to ride 100 miles on my bike beat the hell out of getting winded and having to sit and rest while trying to walk a mile. Full feeling in my extremeties and excellent coordination and balance was far more preferable when compared to the never ending numbness/pins and needles feeling in my arms and legs and the stagger to my gait and the balance issues I now have.

Yes, make no mistake about it, I am complaining but I think I have earned the right to do that at least once. I may keep a brave face on but it doesn't mean I am not angry about my situation and I think anyone dealing with cancer will tell you the same.

I know that in the long run I will learn a great deal about myself from this experience, truth be told I look forward to it, and I want to be able to do something positive to give back to others going through the same.

But today I am angry and that will have to be ok because that is the best I can manage.

Livestrong Challenge Philly

I laughed, I cried, I rode my bike.

In past years I cannot say that the reasons for riding the century distance (100 miles) at the Livestrong Challenge extended much past pushing myself a little while supporting what felt like a good cause. Cancer hadn't touched me or my family but I knew I could do a little something to help support and raise awareness for those whose it had. All I had to do was ride my bike, easy enough. December 28, 2010 that changed. That is the day I joined the cancer club. I hadn't been seeking admission, yet I was granted a lifetime membership.

Shortly after that diagnosis day I knew one thing, I needed to ride the Livestrong Challenge this year. I needed to be there to feel the energy and love and camaraderie that is always so present. The goal was to ride the 100 mile route, a route I had ridden and completed on two previous occasions. I just needed two things to happen, one which was in my control, regain as much fitness as possible post-chemotherapy and the other that I could not control, a scheduled date for surgery that was after the event.

By a stroke of luck, surgery was scheduled for four days after the ride, fate was telling me I was meant to be there and meant to participate this year. I worked hard on the fitness, I ran, I rode, I ate right. Unfortunately I was not able to get back to peak condition yet. I knew my rides were not long enough, my hill work was lacking and as it turned out, the stamina I had been rebuilding was not to a level to carry me through where I had come up short in training.

On the road I decided the 70 mile route would be more appropriate. However, to cover that distance I was going to need to rely on something bigger than myself, the kindness of others. In the days leading up to the event I was sharing some thoughts via Twitter and a simple #LSCPhilly connected me with two guys that ended up being my greatest assets and allies on the road. They pulled me when I couldn't hold the pace, they offered a hand on the back when the climbs got tough, when I fell back they waited and they let me share my story. I kick myself for not asking more about what brought them to this event, but I am eternally grateful that they were there when I needed them and there for all affected by cancer. I hope in future years we can ride together again and I can return the favor and inspire them the same way they inspired me.

In the end my ride day tally was 55 miles. I didn't make the 100 or the 70 but I rode, I rode on a day that eight months prior I didn't know for sure would exist for me. I shed a tear for a minute, frustrated with coming up short to the bar I had raised for myself, but then I wiped my eyes and gave thanks. Thanks to the family and friends that made the trip to be with me and participated in the event, thanks to those that continue to support me on this journey and thanks to those that I met on the road that kept me turning the pedals over.

I laughed, I cried, I rode my bike. I was inspired.

Attitude is Everything

I refuse to lay down.

I will not throw in the towel.

I am not taking my ball and going home.

I will not quit.

Cancer has been one of the most influential teachers I have had in my life. The greatest lesson I have learned is that attitude is everything. If I say "I'm going to have a bad day today" I will most certainly have a bad day. If I let myself believe I am too tired to get off the couch my head will stay on the pillow and my feet will never touch the floor.

A month ago I got dropped by my cycling group when we reached the fast section on the route and I had to fight to catch back up to them and finish the ride. A day ago I got out alone on a breakaway at the same section and they had to chase me down and pull me back. I do not mention this to be boastful (truth be told, they did catch me, but I relished the period I was in the lead), I use this to remind myself to never quit, to not stop trying, to keep reminding cancer who is in charge. Attitude is everything.

When I lost my hair I embraced not having to shave or get haircuts. When chemotherapy robbed me of my palate I welcomed the opportunity to try new foods and flavor combinations. In a few weeks it will be time for surgery and I know it is going to knock me down. But when surgery knocks me down, I will get back up, come back stronger and dare cancer to try and push me down again.

I refuse to simply exist. Life is meant to be lived, that is my attitude.

...and attitude is everything.

Consults, Tests and the Waiting Game

If good things come to those who wait, I must have some good things coming my way.

It has been a couple of months now since I finished the originally scheduled course of chemotherapy, long enough that I can report that I once again have eyebrows, eyelashes, nose hair, facial hair as well as a lovely layer of soft fuzz growing on my head. So much for aerodynamics and being able to go for weeks without shaving. If my voice goes deeper I will officially call it puberty 2.0.

In the time since my last treatment I have been working hard to train and regain my fitness and endurance, it has been a mixed bag so far, cycling has been going better than running but I am consistently inconsistent at both. My efforts seem to be all over the place, the gains I feel like I make one day are gone the next and I am still nowhere close to my old form and rhythm. However, if my treatment schedule permits, I still intend to ride in the Livestrong Challenge. (Please use the link to help me support an organization that has been a great resource for myself and over 28 million others living with cancer. By following the link you can donate and/or sign up to participate in a great event and even join Team Dougan. Please also share the link with family, friends, co-workers, strangers...)

Ok, back on track, treatment schedule you say? Yes, I am waiting to find out the schedule for the next steps in my treatment plan. After a consult, some conference calls and a liver biopsy it has been determined that a retroperitoneal lymph node dissection, commonly referred to as RPLND is the next step in the process for me. It is now just a matter of it being scheduled, which is what I am waiting to hear back about. Ah, the waiting game, it still fails to get anymore fun, no matter how many times I play.

But...

My morning went a little like this; "good news, good news, good news, good news, good news, but....". It was a bit like taking a trip to your favorite restaurant, ordering your favorite entree, sides and beverage and when it comes to the table, there is a large hair of unknown origin cooked into your meal. It's everything you were hoping for and expecting. But....

Today was my appointment to go over the results of my latest CT scan and lab work. From very early in this process I knew today would be the day I would be discussing how my body responded to my scheduled course of chemotherapy and most likely be discussing surgery.

And the results were good, all of my blood work was excellent, my tumor marker levels are back within a normal range and my blood levels are improving, working their way toward normal levels. The tumors in my lungs and liver had reduced in size, they aren't gone, but good progress was made there as well. The abdominal lymph node masses had shown no reduction in size, but that was to be expected, I have known from almost the beginning that tumor masses of this type (teratoma) do not typically respond to chemotherapy and would need to be surgically removed.

But...

And there was the hair in my dinner.

Surgery may not end up being as straight forward as we originally thought. The issue is this, with surgery the goal is to remove all residual tumor masses, however, the concern is that I may have too many residual masses in the lungs and liver that would make surgery a challenge at the moment. One possible way of dealing with this is additional chemotherapy to try and further reduce/eliminate the lung and liver masses. It may entail more of the same regimen I originally had, more likely though I would need what was referred to as "high dose" chemotherapy which comes with it's own "but...". If I were to go the high dose route I would need to do a bone marrow transplant, giving my own marrow to be held in storage and then replaced in me after the high dose round because the high dose chemotherapy would wipe out my bone marrow.

All in all the news was good today, I just still have a ways to go in the process, it really is a marathon not a sprint. The next step is to have a consult with Duke University Medical Center where I am being referred to for this next phase in the treatment plan. Until then all I can do is stay positive and keep working out to be as strong as I can, physically and mentally.