Friday, February 29, 2008
When the MS contin isn't doing the trick, I take liquid morphine. It is great at getting me through those pain spikes that come once or twice a day. Side effect: constipation.
I started Chemotherapy on Monday. I am taking thalidomide yes the same stuff that caused all those hideous birth defects from pregnant mothers taking it as an anti nausea medicine. I had to sign about 12 waiver forms to get it. The packaging has all sorts of warnings all over it so that it feels counter-intuitive to even put the pills in my mouth. The idea with chemotherapy is that it is poison that kills cells in a targeted way. Thalidomide goes after cells that are in the process of division. Since the cancer cells are dividing quickly there are more of them to kill when I take that stuff. So yes, I am ingesting poison. Side effects include: constipation and big time drowsiness also blood clotting.
The blood clotting is why I am taking coumadin which is a blood thinner. I have lost track of the side effects of that stuff but it is probably constipation. Since coumadin is a blood thinner I have to closely monitor my bloods thickness.... I do this by going every other day to the lab in Folsom and getting stuck by a needle. The lab calls later in the day to tell me how much coumadin to take for the next day or two.
So drowsiness is my biggest challenge right now. Don't get me wrong as far as side effects from chemo go, I've got it really good. I am not barfing or loosing my hair or any of those other hideous things. I am just really really drowsy. I take the thalidomide at bed time and immediately fall into a deep sleep. Sleep is so deep that I have trouble staying awake to go pee in the middle of the night. When I wake up in the morning, I go back to sleep for a nap pretty much right away. So up at seven, take my drugs and go back to sleep until 8 or 9. I am awake during the middle of the day. This week, each day, I have had some sort of appointment to do each day. I get back to the house at 2 or whatever and I sleep until 4 or 5. Get up for dinner. If I am not in pain (about half the time) then I eat dinner.
Then there is the constipation. Two days ago I pooped for the first time in three days. It was an unpleasant experience. I think it scared the chickenhawk pretty badly. I was in the bathroom long enough to read the entire Mountain Biking Action magazine from June 07. No kidding, it took about three hours to get the job done. Finishing was one of the most gratifying things I have felt in a long time. So in addition to managing medicine intake, I have to now monitor and manage output as well.
Here is your moment of zen
Tuesday, February 26, 2008
The other project was a big one it is mostly done now. I felt it necessary to make the transition from full time manager and mortgage broker at Bentley Mortgage to a full time cancer survivor/ patient. I expect that this whole battle is going to take the better part of '08 and there is no way that I am going to be able to do justice to my clients and my coworkers if I am fully embroiled in a cancer battle. Moreover, it is imperative that I focus 100% of my energy to survivorship.
This transition comes with great difficulty for me. I have come a long way to the point that I am career wise. Years ago when I was about 20 I made a commitment to myself that I would only do things career wise that made me feel good. I refused to work in something that did not resonate with me in a meaningful way. That commitment lead me on a varied and sometimes difficult path.
In 1987 I stared as a whitewater raft guide. It was by far one of funnest jobs that a person can do. I got the opportunity to share the rivers of California, Alaska and Arizona with countless passengers. It was a great job filled with back breaking work, long hours and pay in sunsets. And there were some great sunsets. Many of my most lasting and meaningful friendships stem from my rafting days. The community of river runners is one of the best I can imagine. I think leading successful rafting trips teaches you many many useful real world skills that serve to make a special person out of someone that puts years into guiding.
As a raft guide you have to make sure that everyone is safe in a potentially dangerous environment. You have to make hundreds of life and death decisions a day. I once had the band Heart in my boat, up in Alaska. I could have changed the shape of musical history by making a bad decision. My buddies Curtis and Tom have both had the Governator in their boat, just think how things would be different...
Good raft guides also have to have good social skills. When someone signs up for a whitewater trip, they are stepping into an unfamiliar world and usually will be in the same situation for a many day trip with a bunch of people that have never met before. A good raft guide is a good host, one that can make everyone feel welcome, included and valuable. All raft guides employ many different techniques to keep the entertainment up. There are jokes, games, knowledge of natural and human history that a good raft guide has to get some form of mastery over.
Good mechanical skills are also key. Raft companies are NOT the most profitable businesses in the history of commerce . One of the ways that they save money is on vehicles. If you want to make it from Groveland to Yreaka in the middle of the night with an overloaded under maintained 1987 Ford Van you better have some good wrenching skills.
Food prep is also a key skill. On the river we try to always impress the "people" with amazing meals prepared over a fire, a propane cook stove and a dutch oven. Many times the good guide plans and shops for the food the day, or night before the trip. Water-proofing and storing in coolers several hundred dollars worth of food in a Safeway parking lot in 100 degree heat is part of the job.
Service is another part of the job. People are not always at their best. Sometimes they need to complain, or vent. You learn to smile and apologize quickly when this happens. That is just part of it. You also need to be ready to deal with shit, literally. On a multi day trip it is required (for good reason) that you have to carry out all of the human waste. Technology has come a long way since I dealt with the groover. I could tell you some horrendous stories about emptying the contents of the groover after a long hot trip but I don't want to taint the high brow content of this blog (joking). As a matter of fact if any of you guides reading this want to tell a groover story, please click comment below.
Team work is another key skill that I learned. Not every guide on every trip is going to be good at all of these elements. Some are better with food, some can socialize all day and feel refreshed at the when the day ends. Not everyone has the aptitude to patch a raft on the side of the river in a downpour. But on any given trip there most likely going to be one guide that is good at each of these skills. The key is to always be ready to step up, do your part well and with a smile because at the end of the day the work has to be done before you go to bed.
Those are just a few things that I learned from raft guiding. What I did not learn was how to wear a suit, sit at a desk be answerable to a budget forecast, build a spread sheet, or any of the self discipline that it takes to be inside a building under fluorescent lights breathing HVAC air all day to earn my daily bread.
As the chickenhawk and I grew up it became more and more apparent that our taste for the finer things in life like a house, health insurance and cars that run on a regular basis was going to require that we get paid in a little more than sunsets. She went back to school and got her teaching credential. I tried many different ways to make some more bucks in the outdoor industry, I managed a rafting company, I ran a kayak school and taught whitewater kayaking, I worked as an independent sales rep for a bunch of "paddle sport" manufacturers. All of these jobs met the criteria of being meaningful but I kept feeling that because I was working in the industry, I was still expected to get paid in sunsets. So, I ventured into the corporate world and ended up for the last six and a half years with Bentley Mortgage.
The part of being a mortgage broker that has come easily for me are all of the things that I learned raft guiding. I am ferocious in protecting my clients well being. I don't want to see anyone get hurt as a result of working with me and I take that duty seriously. I want everyone that I work with to feel welcome and comfortable. I want to find the best possible deal to fit my clients needs. I treat my the other people that I work with, my co-workers, lenders, escrow officers and appraisers as respected team member that are all working to get the job done for the client. I find it very rewarding to be able to help my friends and clients through some of the biggest decisions they will make.
In doing this job for so long I have built up a client list of folks that have for the most part become friends and who trust me to take care of their mortgage needs. For me this is a huge asset. I do not advertise, I do not cold call, instead I rely 100% on referrals from my past clients, friends and family. This is how I have been the sole provider for my family for the last 5 years as the chickenhawk has stayed home and raised our girls.
To walk away from the role of provider has been one of the hardest things I have had to face in becoming a cancer survivor. I worked really hard to get to where I am and I feel like it is being ripped away from me. This gives me a feeling of helplessness, sadness and anger that are hard to describe.
I keep thinking back to the movie Fight Club where the Ed Norton character says, "I am not my job, I am not my paycheck, I am not my furniture, I am not my car..." It is true I am my spirit. I am naked against the world, all of are when you get right down to it all we really are is the sum total of our beliefs, feelings and actions. I have given up my job, I have given up my bike, I have stopped driving I often can't prepare my own food, sometimes I am in too much pain to get a drink of water, I am only doing a halfway decent job as a parent and a husband right now. I am keeping a list of other things I might have to give up, like pooping in a dignified way. These are the insults of cancer. I will take them all on with the best of my ability.
Monday, February 25, 2008
Sunday, February 24, 2008
One of the anticoagulants is lovenox. I have to take that as an injection. So far I have not mustered the gumption to give myself a shot so the chickenhawk has been doing it for me. She is one of the most squeamish people I know but she is doing great with sticking me. I think it is all the years of practice on sorelegs voodoo dolls.
Nana and Papa took the kids for the weekend and we got to spend some time just the two of us. That is rare, but we stayed home and enjoyed the peace and quiet.
That is the short term update. I am working on some larger posts soon to come.
Thanks for reading.
Friday, February 22, 2008
First today we are off to Roseville to pick up my chemo drugs. Luckily I get to take them orally. Sounds like the side effects aren't too gnarly; just drowsiness which is the primary side effect on everything else I am taking so... whatever. I'll be on the chemo for a few months. Perhaps then a bone marrow transplant but that is yet to be determined. It was hard to get the news all over again. I thought I had my mind wrapped around having cancer but it feels a little like I am starting over again.
The Chickenhawk and I were awake for a couple hours last night. We did some good talking. She is feeling a lot of anger, and who blames her. We had a pretty sweet life up until now. I've got a lot of things that I have to give up and so does she. For all of you sending good thoughts, prayers, healing vibes and cosmic psycho rays please send some to her. This is going to be a major test for her. For my part, I am going to give her as much love and support as I can.
So here we go into the next phase. I am ready.
Thursday, February 21, 2008
Father in law Charlie is right now working on (what I think will eventually be a blue job) managing the chemicals on the newly installed hot tub. Thanks to Eric, Curtis, and electrician Manny for getting that going. Hot water soaks are key for managing my pain but our bathtub is too small; I can either get my legs in it or my body, but not both, and it is very very uncomfortable at this point. So I am really looking forward to the hot tub. Another example of a blue job in our family is cleaning up from dinner. The chickenhawk is a great cook -and I can burn water- so cooking is pink; cleaning dishes blue. Thanks to Nana for doing the blue dish job as of late.
Point is, there are no jobs: blue or pink, that I can do right now. My job is to be a cancer patient. Also, it doesn't pose too much of a problem to sit at the pooter and blog. I can also hold down the couch and watch the Tour of CA but that's about it. I can see a real bright side to that, like, I don't have to do sh#+!$?!?&?!
It really boggles my mind that there are dudes out there who aspire to that. What a ridiculous waste of potential. I'd easily trade with somebody. I could take some fat bastard's body, give him my pain, and then work his fat ass into shape for him, just to get my butt out there. Any of you wanna trade? Bargaining... that's one of the stages of grief isn't it?
Well, that is what I've got for today, other than to say hey to Gretchen, she gave me an awesome massage today. Very different technique, I forget now what it is called, but it is very mellow laying on of the hands. It actually got me out of my body and having full-on muscle memory experiences. I felt myself skateboarding, surfing, sailing, climbing and kayaking. I also felt myself descending a nice smooth single track mountain bike trail. My cancer body was laying on the table twitching with the memories and I would jump back into reality with the big twitches. So thanks Jane for gifting me the massage, and thanks Gretchen for taking such good care of me. It felt good to remember how I used to be.
Nana and Papa
The girls who could do anything they wanted for 1/2 hour today
My amazingly awesome community
Tuesday, February 19, 2008
My care group is using a model created by an organization called Share the Care . It was pretty amazing. Share the Care recommends that a care group consist of 12-25 people if you can swing that many. In this blog I have often talked about how amazing my community is, but this meeting spoke volumes about that; there were about 100 people at that meeting! these were all folks that had stepped up and said that they want to help in some way. I am truly honored and amazed at the outpouring of support.
Adam (my group leader who I will intoduce formally soon) asked me to speak to everyone at the meeting. His wife Adrienne, (whom i will also speak of soon) aptly managed all the meeting details. To the assembled group I read these words:
Thanks for choosing to be here. Before I start I want you to look around the room at all the faces… As you do, make a mental list of all the adventures you have shared with so many of these people, your neighbors, your community. Think of all the river trips, bike rides, climbs, trips to the ski hill; peak experiences, you have shared with so many of these folks. We have shared some really good times and some
really good adventures.
A couple of months ago, I took my girls Child One and Child Two out for their first Mountain bike ride out at Cronin Ranch. They are both new to bike riding and the trail we were going to ride would to be a big challenge for them. So to prepare them I started talking about the differences between an adventure and an epic. I explained that all adventures have some bad things that happen and some good things. And that an epic is when the bad outweighs the good. I explained that there is no way to know ahead of time whether you are about to start an epic or an adventure. All you can do is be ready for as much as you can, and deal with the bad as it comes and try to make good out of the trip.
Well, about half way through the ride Child One crashed her bike hard. She cut her face and skinned her knees. We were more than half way through the loop trail. We had her bike, and Child Two's trail-a-bike attached to my bike. My hip and collar bone were already bad at that point so carrying her out represented a difficult option. She wanted to go back, but I explained to her that going forward would get us done sooner. Child One climbed back on her bike and, sobbing, rode slowly away down the single track. Pretty quickly we came upon a horse that she got to pet. Soon after that we saw an adult friend of hers that I had never met. And before we knew it we were all having a good time. The end of the loop was a big up hill for her and she rode it with strength and determination. At the end we clearly had had an adventure.
My family and I are facing a big adventure. We are all facing a big adventure. It is called life. I did not choose this illness that faces me. I clearly don’t want this illness but the fact is I’ve got it and I am faced with the choice of having an epic, or an
adventure. I choose to have an adventure. I think of a quote from John Wesley Powell for those of you who don’t know, He is the leader of the first expedition to run the Colorado River through the Grand Canyon in 1875.
"We have an unknown distance yet to run; an unknown river yet to explore. What falls there are, we know not; what rocks beset the channel, we know not. Ah, well! We may conjecture many things... With some eagerness, and some anxiety, and some misgiving, we enter the canyon below, and are carried along by the swift water.”
I stand before you to humbly invite you, my friends, family and community to
the extent that you are able and desirous to come with me on this adventure
as my team. I can promise you that it will be difficult. There will be suffering. I
can also promise you that like any other good adventure, you will grow. The pay will be nothing. But at the end, you will feel the satisfaction of having accomplished something big and worth being proud of. And I can promise you will have my undying gratitude.
I did not have the strength to stay for the whole meeting. Seth took me home and we watched the Tour of California on VS. I am really glad to be able to watch it on TV even though the coverage is horrendous. Two years ago KD and I were at that same finish line in Santa Rosa to watch JJ Haedo take the sprint. At the time we had never heard of him until then. Yesterday he pulled a repeat. I have had several offers to go down and watch today's finish. Unfortunately, I am just not up to it. Just another item in a long list of stuff you have to give up in order to be a cancer patient.
So, dear readers, I have a humble request. If you are out there watching the Tour of CA please send me pictures. My e mail addy is spencedoggie at gmail dot com. Please include yourself if you'd like. I'll post the best pics here on the blog. Bonus points will be awarded for a picture of you mooning Mario Cippolini.
There are truly too many names to list here and my brain will not remember all of them.
Sunday, February 17, 2008
I'll write more soon. Thanks for haning in there. I am back and I am strong.
PS Blogger still isn't letting me spell check and I have got bigger fish to fry than figure out why it aint working so thanks for bearing with me.
Tuesday, February 12, 2008
I've got a CT Scan today at 4:20. What would you do if you had a CT scan at 4:20?
Sunday, February 10, 2008
Today (sunday) I sat in the sun in our gravel driveway. It was one of those classic sunny winter days where if you are in the shade you need a sweater and in the sun you need to have your shirt off. I lsitened to Songs from an Old Blue Chair and read Share the Care . This is book is like someone invented the wheel and all we have to do is roll it. Tonight we are going to work on pur plan for forming my care group.
I am feeling really good right now mostly because Heather F came over and gave me a massage. She has volunteered to give me massages as I need them. This is a huge gift, I dont think I'll really have the opportunity to fully repay her. I honestly cant imagine what I might be able to do to repay her so I am accepting the gift. With Emmense Gratitude.
I've got two major projects going that are going to take a bit of energy for the next few days. I'll write about them when I am ready. I truly appreciate all of the well wishing and offers of help from everyone. We are working on a plan that will hopefully include the community as much as possible in my healing.
Saturday, February 9, 2008
Many people have been asking me why I call my wife the Chickenhawk. She got the nickname about 8 years ago back when we were doing a ton of mountain biking with Matt from bicycle planet. He gave her the name because she is tiny and completly fearless, just like the character from the Foghorn Leghorn cartoons. She is willing to take on any challenge and usually attacks head on.
So, that is why I call her Chickenhawk. She seems to like it.
Friday, February 8, 2008
The details: Doctor KT just called. She gave us the cliff notes version of what I've got. KT is my dear friend and first mate who works as a GP at Kaiser. She works two doors down from my oncologist and has been my champion through all of this. She has assisted in coordination of my diagnosis and moreover has been a steadfast friend and interpretor of all the medical jargon. I am really really lucky to have her!
So I have cancer. The doc says maybe some sort of plasmocytoma. All through this the doctors have been talking about something called multiple myeloma; however, many of my test results have pointed away from that, while others have pointed at it. Please note: we are stilll not sure what exactly is up but we do know I have cancer in my blood and that it may be a bone marrow tumor in just one spot rather than all over my body. There are other possibilities as well and we will need to do more testing to find out.
As I type we are waiting for the oncologist to call and give us the scoop. KT's call was just a primer. Sounds like I'll be doing some chemo, radiation, maybe a bone marrow/stem cell transplant. Too soon to tell. My sense of releif is immense right now, now that we know generally what it is.
Last night I had a nighmare that they never could diagnose it and I just slowly got more painful and crappy until I faded away. All the doctors could do was study me and try to learn. That has been my worst fear for sometime. At this point I feel very relieved that I have something to fight!
The calls of support and good deeds pointed at us have been overwhelming.
Curtis Hincapie (a nickname) David and Eric M, came over yesterday and installed the hot tub. No one asked them to do it. They just came and did it. Chickenhawk tried to pay them but they were not taking any money. I'm going to build up Curtis's cross bike for him in return. I need to come up with a 10 speed rear deraileur for it. I think all the other stuff is lying around in the spare parts bucket. Eric, if you are reading, drop your bike off and I'll tune it for you.
Aunt Judy and Uncle Peter
Adam and his counsel
Chuck and Nancy
Cassidy for stepping up and helping out
Everyone at the office
Cris and Mike
I can keep going but this is starting to sound like an acceptance speech.
Dont worry about me I can do this.
Thursday, February 7, 2008
If you make a mistake or are about to make a mistake around here you have to admit to making one of the two classic blunders and then make up, on the spot, what the other one is. Makes the whole business of blowing it a little more fun really. Your favorite Pricess Bride quote would be?
Thats all I've got for now,
Wednesday, February 6, 2008
KT and the Chickenhawk were there. It is so great to have them on my team. I really can't say that enough.
Friday, February 1, 2008
As the son of a son of a sailor
I went out on the sea for adventure
Expanding the view of the captain and crew
Like a man just released from indenture.
A note before reading; the spell check isn't working so cut me some slack here....
I am the Son of a son of a sailor. My grandfather was in the Navy in WWII in the Pacific Theatre. His son, my Dad grew up in Philladelphia reading Captains Courageous and Horatio Hornblower. I think it was as an escape from an otherwise tough childhood. His mind was at sea long before his body was. When he and my Mom moved west I think he was doing what he could to get into a boat and start sailing. As a kid I was fortunate to grow up sailing and racing boats. We vacationed by sailing our Catalina 30 up and down the coast of Southern CA and into Mexico. It was partly out of those expereinces that my sense of adventure grew.
Like any other outdoor pursuit sailing is not all fun and games. You are at the mercy of the elements and the vicitm of technology that does not always work properly. Therein lies the confluence of a fun time and an adventure. If one is only going to go out for a quick ride, a nice sail around the bay or a walk in the park one is not likely to encounter an adventure. To have an adventure requires some level of adversity. Adversity leads to discomfort and discomfort leads to suffering. At some point along that continum lies adventure.
I have grown up reading the stories of adventure my favorite is Endurance the incredible voyage of Ernest Shackleton. The thing that I love about stories like this one is how the human spirit can overcome suffering and adversity. It is my desire to be out in wild places that first brough me to seek advnetures. But the thing that keeps me coming back is the suffering. Through adversity and suffering I have learned a lot about myself; what I can do, and where my biggest personal challenges lie.
My love of adventure brought me to Coloma and that is where I have stayed for the last 18 years. I have many heros that live work and love right in my community. Heros that have won my admiration through their accomplishments in adventure and exploration. Coloma is such an amazing community in large part because of the river runners that live here. There is an incredible concentration of athletes and explorers right here for me to admire and emulate. Right off the bat I think of Beth Rypins, Scott Lindegirn, Kelley Kalafatich, Tori Robinson, Dawn Bean, Rusty Sage, Charlie Center... I could go on and on with a list of friends that through their first descents, ascents, and willingness to push themselves have won my admiration. All of these folks have something in common, they are willing to step outside of their normal comfort zone to go farther, higher, longer faster. They are willing to suffer to get through. To grow.
From that willingness to go out on the razors' edge comes an appreciation of the important things; a sunrise, the touch of a loved one, a roof and a warm fire, the connection to loved ones. Things that we live for. There is nothing that I can imagine that would be more comforting than to be surrounded by these folks right now.Adevnture and sufffering are two things that keep me coming back to the bike. There is nothing like clawing your way up a giant climb after riding 80 or a hundred miles only to find out that there is another hill to climb before you can turn toward home. Or rolling out through the hinter lands, destroying a tire 10 miles in the wrong direction from a bike shop and having an easy traing ride turn into a 140 mile epic. Or enjoying a meal and a cold beer with your buddies at the end of a big ride. These are the things that are church for me. The things that transcend the weekly grind. The things that affirm my humanity.
What makes a good adventure for you? When have you worked hard to overcome the odds? I'd love to hear.
There is no new news to report, I have an appoitment for a biopsy on Wednesday with results at some point after that.
The chickenhawk is coming to all appointments from now on. It is enough for me to keep my shit together right now. Next time something goes weird I'll have someone strong at my side to jump in and help. She is stepping in as my ears and extra brain. I am so frickin lucky to have her.
Went to lunch at Jacks with Curtis Hincapie (nickname). I had BBQ Tri Tip and Garlic Fries. Garlic kills bad stuff right?
I have recieved tons of calls from friends with offers of support and good wishes. I am grateful for everything everyone is doing. Heather, Beth, Jen, Noel, Tori you studly Coloma Lotus moms are showing your mettle. Thanks.
Thanks for the note on the car Mr. Robinson. You may be a quiet guy but you are strong man. Yllib, thanks for listening well.
Matt, I dont know what I'd do without you.