Monday, January 11, 2010

Happy New Year!

Happy New Year everyone! Wow, 2010, pretty amazing. There were times when I was not so sure I would see 2010, but here I am. I hope everyone had a wonderful holiday season. Were people good boys and girls and got what they wanted for Christmas, Hanukah, Kwanzaa, Ramadan, or any other holiday I may not be thinking of? Did everyone do their part to try to get this economy rolling again? I tried to be a good consuming American, but you know I am on a pretty fixed income. You do what you can.
As usual, there have been some ups and downs, though things seem to be going pretty well, health-wise, these days (knock on wood). I had a pretty decent scan in November and my marker has been fairly low recently, so we are holding off on chemo for the time being. I have actually been off for a good 8 weeks or so. I am actually feeling pretty well right now. The flip side is that my body, at this point, has pretty much been beat to crap and I am not really sure how much more chemo I can handle. The few months before we stopped, I got a lot of drugs without many breaks. Pretty much every week since the end of summer and I think we may have hit a bit of a tipping point here and there in my body. The peripheral neropathy is pretty bad as I really cannot feel my feet nor much on the very surface of my skin up my legs to around my calves. Without the sensory nerves in my feet and toes, standing becomes a little tricky sometimes.The motor nerves have also been damaged and the associated muscles have wasted away, especially my shins. It is basically impossible for me to raise my right foot or point my toe up. My left foot is affected, too, but there is still a bit of movement there. This all results in me walking very slowly and very hilariously. I tend to march, so as to bring my foot up high enough for my toe to clear the floor and then slap, because I don’t set my foot down heel, toe, more like all at once. I think it sort of looks like a high stepping duck. I am also painfully slow. It is often a race against the clock when I cross larger streets. I barely made it across Sunset the other day, whew, pretty stressful, too. Luckily, I have started physical therapy and, though progress is slow, I have noticed a difference after the first 3 weeks. My therapist gives me a really good workout every session which greatly pleases Eva. Somehow, I still have trouble with food. I have a hard time finding food I like and then often have a bit of pain and discomfort digesting and expelling it. I have managed to put on about 10 pounds, but it is hard keeping it on. One exciting moment was when, about two weeks ago, hair started coming in. It was awesome, little sprouts on my head, my mustache (well my pathetic teenage dirt-on-lip mustache), my legs, my arms (barely), and a few on my chin. My chest and armpits remain hairless about which I have mixed feelings. Right now it looks like I have a buzz cut. The really great part is that I now have eyebrows and eyelashes. What a difference that makes. Before, I looked like a super aerodynamic alien egg. Now, fairly human, though, I will admit, markedly less aerodynamic.
Otherwise, dialysis continues, and continues to be taxing physically and emotionally. It has been more tolerable recently as friends have joined me and hung out for a number of sessions. It is a really good way to catch up with people and pass the time. Again, I am very thankful that dialysis exists and that I have such a comfortable set-up, but it wears on you over time. It is just always there. There is no vacation from dialysis. My parents have been doing an amazing job of helping out with all the set-up, putting me on, feeding and keeping me warm during the sessions, taking me off, and cleaning up, but it is still just emotionally wearing. It is hard for me to need to be helped so often. I liked my old self image of being very independent and self-reliant. I tend to resent the situation and then you get grumpy Tyler. Not very pleasant. Sometimes the biting remarks just come out without me even thinking to close my mouth in time. I apologize if you are ever on the receiving end of one. Usually, though, they are reserved for family. Eva does a good job of balancing me out and often stops me in my tracks with remarks of her own. Like a good punch to the nose, I usually stop, shake my head a bit, and then smile as I find myself in a new, sunnier mood.
I have not been too active, but I did manage to get out of town for a few days before Christmas. While Eva was visiting her folks in Switzerland, my folks and I went up to Orcas Island to visit my Uncle Jerry and Aunt Mary. Orcas is up in the San Juans, right on the border with Canada, near Victoria. They have a beautiful house though it is a little out of the way but well worth the trip as it was really great spending some time with my aunt and uncle. It was a little chilly, so we spent most of our time indoors catching up or eating and catching up. My kind of trip these days. One evening, we drove up to the top of Mt. Constitution and enjoyed a pretty fabulous view though it did take quite a while for me to drag my sorry ass up all the stairs in the tower at the top. Throughout the few days, there were some pretty good stories about small town island life. I maybe romanticizing it a bit, but I really like the idea of small town living. I loved the summer I spent in Petersburg, Alaska. They often have such character. Eva’s little town in Switzerland is pretty cool, too. Don’t get me wrong, I really enjoy city life, but I could see myself living in some po-dunk little town somewhere (well, I guess not now, as I do require quite extensive medical facilities, oh-well).
Eva as been doing well and has really been enjoying her MBA program at Pepperdine. She had a great first semester and is just starting the second. It can be very stressful at times, but she handles it very well (with a little encouragement sometimes). The folks are doing well, too. Both are pretty active and get out and about quite often (much more than me but that is not really saying all that much). Sadly, my Uncle Tim, Aunt Robbie’s husband, recently passed. I did not really know him very well but the loss will certainly be felt by the entire family and my heartfelt condolences go out to my aunt. I attended his memorial service yesterday and, though it is always sad when someone passes, the service was a very nice celebration of his life and it was really good to see so much family.

Again, I wish everyone happiness and success in this coming year.

Carpe Vitam and Live Strong,
Tyler

16 comments:

Anonymous said...

"Biting remarks"? I haven't heard a cross word from you ( at least none I didn't deserve.)
I see great improvement working with your physical therapist. What a godsend.
Tyler, your the best!!

Love

Dad

Anonymous said...

Tyler, Thanks for the update. Your Dad does a good update but it's always nice to hear it from you. Made a couple impressive trips during the break, saw the Getty Villa with the twins and Cheryl and got to take a gander at your digs. Must be nice to have to shut your windows so those waves don't get you. Ha Take care Mark Carpenter

Anonymous said...

hey Tyler, I hope,sort of, that i did not shame you into posting an update. Perhaps, i was the 'last straw' of annoying comments that finally put you over the edge and back on-line. i happy for the update. I look forward to seeing you and Eva at the office.
dara

Anonymous said...

Happy New Year Tyler! I look forward to more posts in 2010. You are always in my thoughts and prayers. My family sends their best.
Dawn Faessler

Anonymous said...

Happy New Year, Tyler and Eva! It's great to hear from you and that you are doing well! You and your family are in my prayers daily. Isn't it amazing how important the little things are- like hair! You are such an inspiration to all of us- I am always amazed at your positive attitude. You and your family are the least grumpy people I know! = ) I pray that God shines His smiling face on you, blesses you and keeps you safe! Nancy

Anonymous said...

Hi Tyler and Eva -
Happy New Year! So glad to see you update your blog, and read how you're fairing these days...so glad you're doing well enough to stop chemo.

Sherry

Anonymous said...

Tyler,

Always so good to hear from you. We all look so forward to hearing from you and believe me it inspires us all the time. I know your journey has been a tough one, but you have bben so brace and courages through it all. Your Eva and Mom and Dad have been the biggest blessing to you and I am sure they can understand the Biting remarks once in awhile.

Continue your fight and know that you are always in our hearts and our thoughts and payers.

Your Dad is right, you are the best!!!

Take care and hope to hear from you soon.

Your fellow employee and friend,
Anna

Anonymous said...

Wow!! Sorry about the spelling, I meant "you have been so brave....

Adios,
Anna

Anonymous said...

Hi Tyler!

It's good to hear from you! Let us know when we can come visit - we're always up for helping dialysis be more bearable!

Happy New Year,
Becky and Nate Bershtel

Anonymous said...

Happy New Year to you and Eva!!!! It is great to hear from you, especially with the good news of the Chemo break! Erik is now a freshman at Wilson...can you believe it? I hope to see you soon!! Love Always, Laurie

Vicky Durham said...

Tyler, you are amesome! Thanks for the update! Aaron told us that you have started on your book. It will be amazing! I can't believe all that you, and your family, have been through, but you are always so positive, uplifting, and funny when you share your experiences! We all love you and your family so much!! We hope that 2010 will be a great year for you!! : )

tina said...

Tyler,

It's great to hear from you ! Sounds like you are doing pretty good ! If you have time give me a call I would love to speak with you. My mom was dz with Pancreatic Cancer last march and is going through chemo. So any info would be helpful.

Tina Condon 310-488-2025

Markus Kaufmann said...

Hey Tyler,
thanks for sharing your journey.
I wish you hope and joy throughout 2010.

Greetings from Switzerland
Markus

kt chae said...

hi tyler, i found you on the pancan survivor website. my boyfriend (24) has been diagnosed with pancreatic cancer, that is also inoperable -- in June 09. he has nodules in his lung - and most recently a lesion in his liver. from June until now (Jan 2010) he has been pretty "healthy" eating and active (even going on vacation to snowboard in Lake Tahoe.) But he has taken a very scary turn for the worst and right now he is only getting treatment from Eastern medicine (although he had consulted doctors and oncologists in other hospitals.)

I have a lot of questions and would really like to talk to you. I am in San Francisco, and I saw that you are in California as well.

Please contact me if you have time - I would really appreciate it.

Thank you so much. Your story is very hopeful for me - since now is very scary for me.

cadamatre@gmail.com

Anonymous said...

Tyler,
When I first starting working for your Dad, and Caray was still a little girl, I wanted her to grow up to be just like you; smart, athletic, good-looking and sociable. Then I wanted her to marry someone just like you. Obviously, you found someone who has the same wonderful traits that you do in Eva. Now, if Caray can just do the same.
Best, Dara

Anonymous said...

Hi Tyler. I was spending some time on the Pan Can website and came across your story. At first when I saw how young you were when you were diagnosed, my heart really sank. Then I started reading your blog and am so imperssed with how well you are doing, what all you are doing, and how balanced you are. Though I don't know you, I'm enjoying your blog and am starting to feel like I do know you (in a non-creepy way). Consider it just one more person rooting for you.

Oh, and that dog Sony is absolutely adorable. I love the somewhat grumpy-yet-cuddly facial expression.