Mini Update - Grayson Skiing

Grayson has been trying to ski, and tonight he was less afraid and tried a bit more. He still has some work to do with the "pizza wedge" or "snow plow" but he's getting better with his balance and his courage!!! I'm going to try and add a video of one of his ski runs!

This video took place prior to his lessons. We, meaning my sister and I, would have placed him in lessons right away, but with it being Spring break and all, the lessons were booked early in the week. We thought we would get him started and see how things worked. It was interesting, but as time went on, he became more confident. I showed him that it wasn't so bad if he fell, by demonstrating that a few times. So, this is one of the videos from Wednesday night. This is his third round of skiing under the rudimentary tutelage of Sheila and I. We got out at night under the lights so we avoided the crowds. This ended up being a good strategy as he was plenty distracted as it was. He was enjoying himself this night even though it was icy after a very warm day.

What we learned from the instructor was that he didn't have the musculature to create the "wedge," or as the instructor called it, the "arrow." He had a little device that screwed to the end of Grayson's ski's with some surgical type tubing between the attachment points, which helped Grayson maintain the shape that he needed. It's called an "Edgy Wedgie" or something like that.

So, there it is. I was too busy to try and catch a video while we were skiing after his lesson. It was a lot of fun watching him

Chemotherapy Update – 6-12-09

I want to thank all of those people that have stepped up and helped us thus far through the treatment. I want to thank everyone individually, but I’m afraid I may leave someone out. So, somewhat generically, a BIG, THANK YOU:

• To all of our family that has come out, or who is scheduled to come out, and all of the work they’ve done…be it cooking, cleaning, yard work, fixing broken things, watching Grayson, or transporting me to and from appointments/treatments.
  
• To all of the friends and family that have provided transportation to and from appointments/treatments.
  
• To the many people at work who quickly filled up my shared leave “pot” and the many others who tried to donate and could not because the hopper was already full. The feeling of gratitude and the strong emotions go along with the enormous sense of relief of being able to focus on my health and my family and not having to worry about getting to work when I should not be working.
  
• To those friends and family that have brought us meals to help during the stressful weeks of chemo. This helps Jessica tremendously as she is taking care of a house and 3 people much of the time.
  
• To the family that has provided financial support to help with the mounting medical bills. A very, unexpected, overwhelming gift that is greatly appreciated.
  
• To the family and friends who have helped with Grayson as we appointment hop. This also helps Jessica feel somewhat normal, and allows her to have time to de-stress.
  
• To the friends and family who have helped with the yard work…not fun stuff considering the degree to which we are behind because of this chemo mess, and considering that I’m useless when it comes to that stuff most of the time now.
  
• To all of those who have sent flowers, cards, well-wishes, and/or gifts.
  
• To all of those who have prayed, meditated, sent well wishes, thought positively, or sent good JuJu my way. Along with all of those who have asked about my well being and listened to me ramble in response.
  
• To our counselors who have always offered wonderful support, insight, guidance, and tools to help us along the path of becoming better individuals, and who have helped us work (and continue to do so) through a difficult time in our lives.
  
• To Jessica…she is in a quite difficult spot…lonely contending with the workload that taxes the two of us when healthy, juggling my appointment schedule, putting up with my chemo brain, my attitude when beat down, and a three year old boy, all the while working to process through her own feelings during this time.
  
• To God, the Creator, the Energy of the universe, the greater human consciousness.

Chemo round 3 begins Monday (June 16) and I’ve done no updating in a while (See Blog Bonk). Jessica filled in the gap with our family blog, and I’ll review the last round in my own words…hopefully quickly.

Round 2 was in some ways easier than round 1, and in other ways it was harder. Round 2 seemed to begin a little easier. Maybe that ease was because I knew what to expect, maybe it was because the drop in energy/stamina from before round 2 began and during round 2 was less significant than it was before and during round 1. Round 2 was more difficult than round 1 because the time to begin recovering (feeling slightly better) from the chemo after round 1 was between the 72 and 96 hour window, and after round 2 the time to begin recovering was around the 5th day. However, after round 2 the constipation stuck around through the 8th day. Yes, constipation is, in my case, among the many ills of the gut that I have experienced during and after treatment. Besides the nausea, which is mostly controlled through medication, my gut always feels full…this is why I believe a lot of cancer patients lose weight during treatment – they have no appetite. I feel full too, but I know it’s important to keep my calorie intake up…I actually eat more than I should…eating seems to settle the nausea I do have, I eat because I’m bored sometimes, and because I am much less active than I was previously I should be taking in a little less than I was...as a result I’ve gained 15 to 20 pounds in about a month and a half.

Round 2 was marked by the unexpected too…I didn’t end up having to take the Neupogen shots that I had to take between rounds 1 and 2…this was a blessing. Adding to the blessing (sarcastically) was that instead of having excruciating back pain due to the shots was that I threw out my back…seriously hammered…so, I got the pain without the shots! After 3 chiropractic adjustments and 3 massages I’ve begun feeling mildly better today, though it’s still killing me. I think I’m being encouraged to slow down and rest…and write (again…see Blog Bonk)!!

Round 3 will be yet another ‘new’ experience. My goal is to tackle this round in a much more healthy and aware way. I want to exercise more during and after treatment (even if it’s just walks), journal more, find the stillness within and find my souls path – so I can follow my life’s true path, be more loving and lovable, and find the joy in the moment. Challenging goals considering how selfish and un-enlightened I’ve handled my first two rounds of chemo. This is an invitation for those of you who read this, have time, and desire to hold me accountable.

Lessons: Thought One –

Through the whole cancer/chemo process I knew there must be a lesson in getting cancer; I believe in this and have felt I’m open to the lesson. My life is not defined by cancer however; it’s just the present episode. The weakness of my character/spirit/human condition, the fear/pain/uncertainty/stress of my current condition, brought out in me a desire to ‘fast-forward’ through my days of treatment and subsequent days of feeling like crap. This idea of ‘skipping’ the worst parts of my treatment seemed reasonable until a week ago (6/5/09) when in a couples counseling session, one of the counselors tossed out the idea that my ‘lesson’ through all of this might well be in those times I’m desiring to ‘fast-forward’ through. Wow…that brought out a lot of emotion…I believe because that idea really hit home because it’s the truth. Even if the ‘lesson’ is not in those times which I have been choosing to ignore, it’s a time I’m failing to explore who I am and what I’m going through. It is in the tough times we learn the most about ourselves…that is if we are willing to identify our feelings and process those feelings, otherwise we are destined to repeat that ‘lesson’ in some way or another. I have been taking the easy path…the less challenging path. This is not the first time I’ve done this, but it’s the first time, in recent memory, that it’s been so hard for me to see that I was taking the easy path.

One thing I consciously tend to do is suppresses my spirit by filling up my time and my life with many activities and time wasters that don’t matter in the larger picture of life. Chores have to be done…lawns have to get mowed, clothes need washing, floors need vacuuming, weeds need pulling, bills need to be paid, we have to work…but a spirit needs to be filled. Relationships need to be cultivated, creativity needs expression, nature needs to be experienced, and joy needs to be breathed in constantly. I need constant reminding in a few simple ways: 1) If tomorrow were my last day, what would I want to do today, 2) In the last days of my life I hope that I feel I’ve taken advantage of my moments to feed my spirit by enjoying life…not having distracted myself constantly by doing stuff (chores, etc.), 3) What’s important in life?...Relationships (people), seeking the most out of life, being grateful, learning, being open-minded, loving unconditionally, and experiencing joy as regularly as possible.

Blog Bonk

Writing, Journaling, spilling out words, expressing myself…whatever it is, it’s something that I do a good job of avoiding. The most evident, conscious way I avoid it is through chemo and several subsequent days thereafter due to the agreement I made long ago that I be as close to perfect as I can be. Perfectionism seems to be the antithesis of creativity, especially when I’m new at placing my thoughts on paper, and trying to have them make any sense. In this regard, the lesson to be learned is that of opening the creative pathways in my brain (and spirit) and let the feelings, thoughts, etc. just spill out in whichever way they happen. This is quite the challenge to a meticulously minded perfectionist who’s ego battles to maintain an image that doesn’t exist…it’s imagined…I’ve never thought about the similarity in those word and the irony that exists between them until just now…oh well.

Where am I?

Well, I wanted to keep my blog up to date as I went through my chemo last week, but with a clouded head and little energy I found the idea of putting thoughts to cyberspace a little daunting. So, a week has gone by and I don't know how clearly my thoughts will come over, but I'm going to give it a try nonetheless.

Trying not to dwell on this thing too much, I'm going to try and relay as quickly and succinctly what the first week of chemo was like. Bottom line it was a whirlwind. The whole thing has been a whirlwind. Everyday before I began treatment I got to get blood drawn...lucky me! I could never be a drug addict...especially with needles...my arms are bruised from the IV's and the blood draws. By the way...I am only getting the EP protocol (Etoposide and Platinol (Cisplatin)) and didn't have to do the Bleomycin.

Monday: Blood draw, doctor visit (Dr. Sui - another oncologist on the team whom will be available to me in the early parts of the week), and treatment (about 4 hours in the treatment area). Tuesday: Blood draw, treatment. Wednesday: Doctor visit (Dr. Aschtgen - Naturopatic Oncologist), blood draw, treatment (Larry Schorno kept me company and drove me home. He's a super compassionate, love-filled man, whom recently lost his wife to cancer, and provided great company and conversation). Thursday: Blood draw, doctor's visit (Dr. Wang - my oncologist), treatment, and accupuncture appointment (I'm trying everything, and this was very relaxing...and I was almost completely unaware of these needeles...they felt like little thumps). Friday: Blood draw and treatment (E.J. Curry, who's basically a family member, picked me up and brought me home. Friday ended up taking longer than I thought it should, but things can be pretty busy in the treatment area. E.J. was a lot of fun and we teased each other about fighting alzheimer's as we tried to finish crossword puzzles!)

How have I felt? Physically: tired, weakend, fatigued, achy, nauseous, bloated, dizzy, gut-bound, forgetful, and spacey. Mentally/Emotionally: scared, weak, sad, enthusiastic, drained, stressed, angry, weak of character. I'm positive about this whole thing, and how could I not be. I'm in the "good prognosis" category of a cancer that has a better than 90% 'cure' rate...I was strong and fit going into it all and that will only help me as my body continues to get exposed to the build up of toxins from the chemo.

Of the many lessons that cancer has to teach me, one is to look at myself in a very raw way. To show me the ways I can improve myself. It's not always easy looking at oneself in such a way, and cancer has forced me to continue evaluating me as a person...now, in a much more primal way. Life is good!! I love you all!!

Busy, Busy

Well, this weekend is busier than I would like, but garage sale here we come! We have a community garage sale every year and we wanted to take part in this because Jessica has been doing a lot of de-cluttering and our garage is getting more and more full with...uuhhhhh...stuff. We have a Kentucky Derby party to go to on Saturday (put on by our friend EJ and it's always a bunch of fun), more garage sale on Sunday, and hanging out with Rob and Sylvia (Jessica's God-parents) Sunday afternoon

All of this is great, but considering this is my last non-chemotherapized :) (do I get any points for that word?) weekend for a while; it's kind of a bummer we can't just hang out. I wanted to get a long bike ride in, and I know Jessica needs to get about a ten mile run in this weekend. The weekend is probably going to be a lot of fun though, because when I go ahead and roll with 'what is' I end up enjoying myself anyway...just in a different way than anticipated. More soon...probably tonight!

Metastatic Seminoma

Cancer...never thought I was immune, but thought I wouldn't ever have to personally deal with it. It's fine with me at this point. It's not crippling by any means, and I imagine a large part of that is due to the type of cancer, it's non-aggressive nature, and the great prognosis.


Metastatic Seminoma is the type of cancer with which I have been diagnosed; it's a type of testicular cancer. At this point my oncologist is reviewing my blood work (or waiting to find time to tell me the results) to establish the stage of the cancer based on my tumor markers (levels of AFP, HCG, and LDH). I got a call today and I start chemotherapy on Monday, May 4th. The regimen calls for five consecutive days of treatment and two weeks after the treatment for my body to recover (one cycle). This will continue for four cycles (at least that's the latest information I'm aware of).

As far as I know, at this point, I will be given two drugs in my chemotherapy...Cisplatin and Etoposide. There is the potential that another drug will be used, but I don't know yet, and I want to avoid that if at all possible...this drug is called Bleomycin.

Backing up a little, I went to the doctor in November after having significantly swollen lymph nodes for over a month. Eventually, I got referred to have an ultrasound on these nodes, and was subsequently referred to an oncologist. A CT or CAT scan later showed additional, affected lymph nodes behind my sternum, near my upper (thoracic) spine, near my lower (lumbar) spine, and in my pelvic area. Interestingly enough, there appears to be no cancer in the testicles (this will be confirmed with the results of a recent testicular ultrasound).

Wrap up:
Bottom line, "it is what it is." I can't control what it is at this point, but I can control my attitude toward this disease and how it impacts me. I'll talk later about how I have been processing this journey.