Saturday, September 05, 2009
A Summer To Remember
The pictures -
top: me standing outside our room at the Scuba Club Cozumel dive resort
Middle: Harley and I dressed for our last dinner at the resort
Bottom: Photo by Harley of me at Panorama Point via Paradise at Mt. Rainier last Monday August 30th.
I have been gone a long time...few posts. I have been busy. Where do I begin?
A greater portion of the past few months has been about obtaining goals, or rather shall I more accurately define as seizing opportunity for which I have used goals as a motivator to get me there.
That is the important thing I will stress about shooting for a goal..It forces you to take action in pursuing the life you desire. Without them, you can fall into a lazy state with yourself feeling you have all the time in the world. Then soon enough you may discover yourself 20 years down the road saying "There is always tomorrow" when you come to the reality that there are not many tomorrows anymore.
When you survive cancer, endure a terminal illness, or live a life of uncertainty, it creates a sense of urgency where you want to do everything before time runs out. Having escaped surgery last fall and the news that I was doing so great that the risk was too high to do another surgery at that point, I thoroughly looked forward to enjoying 2009 and the NW hiking season in particular. I was so elated and confident, that I conjured up the courage and strength to train to RUN (not walk) a half marathon in May to raise research funding and awareness for NF2.
Although the hiking season began in April, I held it off until after the marathon event as I did not want to jeopardize my ability to complete the event for which sponsors and patients were counting on me. I also did the same last summer when I trained to walk a long distance trail in September 2008 for the same reason. So with the 31.5 walk and half marathon out of the way along with the stresses of fundraising, I was looking very forward to time off from everything to just enjoy my passions of hiking and diving the summer away. Due to the all the periods of illness and the side effect of damage to my vestibular system following radiosurgery in 2004, I was not able to fully partake in these activies until this year. Therefore, it was even more significant that I "seize the day".
During my March followup MRIs the news was not good. After reading the report for the first time in the office before seeing my radiation oncologist, I swallowed hard and tried to hold back the tears when the words "growth" and "increase" popped out at me. I did not want to scare my husband Harley who had yet to see the report. So I just became quiet and tried my best to smile hiding the fear behind the lenses of my eyes. After 14 years together however, I am not so successful at hiding things. I really could not speak so when he sensed my panic asking what was wrong, I summoned up a smile and barked in a weakly crackly perhaps high pitched voice "Nothing".
When moments of panic like that set in, I try really hard to push it deep down and focus on something else. That is the way I survive and get through what I have to get through. Otherwise, fear would paralyze my mind throwing me into a deep pit of depression and anxiety.
I scour my reports and like to be on top of everything. With a medical situation as complex as mine, I don't want anything to be overlooked. Understandbly, that is why I was reading the report before the doctor came in. I request and demand it. Seeing I have to multitask with reading captioning and looking at images at the same time (which is no easy feat let alone comprehending it), I like to review the report first so I can be armed and prepared with my questions. In this case, the growth was sort of overlooked until I brought up and questioned the statements containing "growth" and increase". So then we consulted the film images on the computer for a confirmation on the measurements. (You have to understand, I have so many tumors that it is complicated to get a precise measurement and keep track of them all. I am an unusual case in the realm of brain tumor patients typically seen - not NF2 patients however).
As I had worried, there was indeed growth that we dicovered on the images. A tumor we thought would remain stable had actually grown and fused with the larger more critical tumor. Once again, there is significant compression on my brainstem by the 2 tumors.
When all this is going on, I have to put on another hat and step out of the emotional role as patient and instead approach the situation as a med student learning of a case or a parnter trying to solve some sort of important problem. It is not easy to do this but I think for the entire year if I am remembering correctly, I held it together and did not break down in the doctor office (3 visits with 3 different specialists on both east and west coasts). Everyone is in agreement that surgery is the recommended course of action (including specialists in LA and Stanford).
My appointment with my neurosurgeon was April the week before the Eugene marathon. I could not even comprehend the seriousness of a brain surgery let alone get into the medical frame of mind. So unlike me, there was no long list of questions I prepared or really any dwelling I did about the growing tumors. My focus was more on my major upcoming athletic feat and meeting my fundraising goal of $5000 which I increased to $6000 once I attained my goal by the end of the week.
Partly because I got away without needing a surgery in the fall, we questioned whether I really needed one now. Afterall, I was in the best athletic shape of my life and about to run a half marathon which is 13.1 miles! It is by far the furthest I had ever run! My surgeon said the situation was now getting "scary" as the tumors were on the move. He wanted to address it while I am healthy and not wait until I am "sick".
I just could not bare the idea of blowing my whole summer on a recovery and missing the hiking season while I pined away waiting to get better. I already know what that is like from summer 2004. I also was anxious to get back to diving that I had restarted last September. I was basically tired of putting my life on hold so many times - mono, cancer, school, more school, radiosurgery, brain surgery, etc. - when does it end?! I did not want to wait again to dive and hike until after another surgery. What if something went wrong and I became paralyzed or I am sent back to the drawing board with my balance (falling over just closing my eyes while standing in my kitchen). No way! Seize the moment when it presents itself and ride it out for as long as it lasts!
I remember my surgeon understanding my busy lifestyle but advising me that this matter was an important situation to address. My response was that I could not do any thinking about it or make any decisions until after the half marathon I was to run at the end of the week. In order to accomplish what I had set out to do, I needed my total focus on only that - finishing the half marathon.
On the way back from the marathon we stopped outside of Portland and met new friends Vaughn and Donna (brother and sister). Vaughn, a wonderful man in his early 40s, had overcame a horrendous ordeal with NF2 post Gamma Knife radiosurgery where he suffered a stroke and was confined to a wheelchair for a period of time. Through lots of hard work and resilience, he has amazingly regained the ability to walk with the aide of a cane.
Ultimately, I think I decided I was going to live out this summer as best I could and hold off surgery until the end of August. My encounter with Vaughn and learning of his story, I think helped me to solidifiy my decision. I do not think I even contacted my surgeon back until the end of May and suggested a late August surgery date but had not committed to scheduling one.
Putting the surgery back out of my head, I concentrated on recovering from the marathon, getting psyched up for hiking season, and finishing my fundraising. Well intentioned, friends tried encouraging me to take on another half marathon and NF fundraising endeavor in June, but I held steadfast to my commitment of a "free" summer to live my passions. I have to admit, it was sort of enticing and I did ponder it, but I also remembered my committment to Harley to do some diving and help out with other things this summer. The training and fundraising takes up a lot of my time and not only is it a personal sacrafice but it is also a sacrafice loved ones endure too in support of me. So that sealed the deal and I am completely happy with my decision.
Shortly after the half marathon, I learned from another patient with NF2 from Washington state, about a natural history study of NF2 at the National Institutes of Health outside WA DC. There had begun recruiting candidates this year so I was very eager to become part of the study hoping that they would magically find some miraculous finding which would get me out of the surgery. The rest of May consisted of coodinating my records from various institutions to be sent to the NIH. While I enjoyed the summer hiking and diving, I anxiously awaited acceptence into the study.
In January my goal was 20-30 dives for the year. After the marathon I realized the goal just could not be achieved if they were all NW dives because we only have 1 day of the week to dive and it takes so long to get prepared and get me in and out of the water, that we only end up doing one dive that 1 day. Further, summer is not actually the best time to dive in the NW and the visibility was total SH-T in June! We suited up by could not see a foot in front of us due to the worst plankton bloom I have every seen! Therefore, 2 of our dives were a botch and we just practiced on the surface instead. So with 2 weeks unable to dive in the month of June, that left us only a maximum of 9 dive days if I was going to have an August surgery. After surgery I would pretty much be out of diving for the rest of the year so we decided to take a warm water anniversary trip to Cozumel.
We have always been cold water divers and have not gone on a warm water dive vacation since our honeymoon in 2000. Therefore, instead of waiting for another year to celebrate our 10 year anniversary by going on a dive vacation, we chose to "seize the moment" now. Afterall, there are no guarantees in life and no guarantees the outcome following brain surgery. It is out of our hands. So why wait and chance blowing a perfectly good opportunity? We held off taking dive trips while I went to grad school. I finished and then look what happened? Thus, my wonderful and fabulous husband (who I also refer to as my person "Make a Wish foundation"), took me on an absolute dream vacation! We did 30 dives in 10 days, I finally got to see a sea horse, and I even pet a sea turtle about 70-80 feet down! PLUS! I went wreck diving twice and night diving almost everynight which are activities I thought I would NEVER be able to do again!
As I sat by the pool reading "Every Second Counts" by Lance Armstrong while Harley attended his photo class in the early evening, I was blessed by the most sureal visual setting. I felt like I was in a dream and the thought crossed my mind that maybe it actually was a really good dream! The only thing that kept me in reality is the fact that I cut up my knee on the coral sand a few nights prior while trying to burst open the beach party pinata. The bandaid was still covering the wound. In dreams you don't cut yourself, right?
Back to the hiking.....for years I had wanted to hike with a program for women cancer survivors. However, the day of the week in the hike season landed on Wednesday which never worked out for me....I was either working or going to school. But this year I was doing neither. Further, I was no longer sick and my improvements in balance have been the best they have been in the last 5 years. In previous summers, I would not have been able to handle the difficult and steep terrain.
After having some struggle but nailing the first hike with them which had questionable terrain, I got excited and chose to stick it out. I even made the goal in June of trying to complete 20 hikes before my surgery - 1 hike a week with the cancer survivor group and 1-2 hikes on my own on trails with easier terrain that I know well and frequented by many other people.
It has been absolutely marvelous! I have been able to visit and hike on trails I did not even know existed nor could do alone. Also, I have built up the confidence and skill to tackle two pretty strenous hikes completely solo. I have made 7 solo ascents and 2 of them required srambles over large sharp boulders to see the view at the top! What a total thrill and high it has been!
Due to delaying my surgery until the fall because of my NIH visit in August and the need to abstain from taking the propolis supplement a month prior to surgery for healing reasons, I was able to reach my 20 hike goal with the cancer survivor group last Wednesday. Unfortunately last week I strained my buttock muscle on a run which has become increasingly worse by the end of the week. Therefore, I need to ease back and give it some healing time before I try to fit in as many more hikes as I can for the rest of the season.
After rescheduling 4 times, I think we now have a firm date of Wednesday Oct 21 for my surgery at OHSU in Portland. While resting my rump, I have need to get things squared away at the house, catch up on blogging and updates, and getted my things prepared and ready for my pre-op trip to Portland this month and the surgery next month AND celebrate my birthday too! :o)
Once we got back from the NIH trip in August, we went to the DUI demo day in Tacoma to get fitted for my new DUI drysuit that I have drooled over for 13 years. All my waiting paid off though because new this year they have the pink camo material avaialble! I LOVE pink! It is going to look sweet! I will be one of 3 so far with it in the US and each of us has a different design. It will take a month to make the suit so I hope it comes in time to get a couple dives on it before the surgery. ;-)
To get some idea of what it will look like, visit the following site: DUI hot new look
Thank you to my beautiful husband Harley for providing a life with such adventures and helping to make my dreams come true! I love you dearly and am deeply grateful for your patience, support, encouragement, love, care, and more than words can define! Without you, none of this would have been possible. I thank God everyday for allowing me to be lucky enough to recieve such a blessing!
To my friends and fellow hikers with Team Survivor NW, thank you for letting me be a part of your group and helping to fulfill a dream of mine that at one time I thought was dead forever! I know it must be pretty boring, scary, and frustrating hiking with me at times and I am sure several have past by wondering what a fool like me is doing out on trails like we have gone on. This summer has meant alot to me and the times we have spent together out on the trail. It groomed me for the mental toughness it will require for me to face this surgery. Thank you for giving your time, agreeing to spend longer on a hike for me to cover the terrain, and for allowing me to challenge myself. Not only have you provided me a productive place to channel my focus and energy but have allowed me to explore an outlet that some of us with NF2 like to refer to as time "to decompress". No matter how hard a hike is for me, the mountains are my sanctuary and where I am at peace. Thank you for bringing me there so I can re-energize my soul and face the challenges ahead!