Monday, July 28, 2008

A Touh 3 Days

I received two treatments of radiation on Friday and I was still assimulating the first big dose of Cisplatin / Cetuximab. As a result I had a weekend that was filled with uneasiness and restlessness. We tried to make it as niormal as possible, including going to the A's game on Saturday. Not such a good idea, but we do live and learn. I will definately take it more cautious moving forward. I am feeling a little more "normal" this morning, but am still suffering from a anxiety and restlessness.

In my last blog I forgot to thank my brother Steve and sister-in-law Pat for coming down to Eugene during our visit. It was great to see them. I love them dearly and thank them for all their support.

Dr. Yom took a look at my tumors last Thursday and said they had definately shrunk. I can feel it as well. THAT IS MUSIC TO MY EARS!

Here's to a great week of treatment and recovery.

Be well,

Sunday, July 27, 2008

Quick Update

Hopefully one of us will get on and give more info and some photos soon, but in the meantime...

Glen has finished his first week (4 days) of treatment. He has not really suffered from nausea - YEAH! but has been very tired and not so perky the last day or so. On Fridays he has 2 doses of radiation and it seems to really wipe him out. Duh. Hopefully the rest he is getting this weekend will help him to rebound for the next week of treatment and give him the energy to do some of the things he likes to do - work! watch baseball! maintain his "personal" baseball team (with Niels)! hang with friends and family!

Kids and I go to NYC on Tuesday. Thanks to his mom (also a "Joyce") for coming down to take him to his treatments and provide meals and company. Thanks also to Galen, our "best man" for coming down today to take him to UCSF tomorrow. And while I'm thanking people...it was great to see his brother Steve and sister (in-law) Pat in Eugene last week. They made quite the trek from Pendleton to join us for dinner!

Since Glen will be spending less time on email/phone, please continue to post comments to his blog. It's really very uplifting to read your comments.

Love to all,
j

Tuesday, July 22, 2008

The First Day and . . . a Few Thoughts on Oregon

First of all, thanks to Joyce for posting a blog that so touched my heart. It says everything I could ever want to express, and more. I have always felt Joyce and my job as a parent was to guide Blair and Niels in the acquisition of the skills that are necessary to make decisions that will lead to them enjoying success in life while they explore their passions. You see, I love my job and am already missing terribly the day to day interaction with the wonderful team at TY and our wonderful clients / Friends. One of the numerous gifts I have been given in the process is understanding this. I intend to receive this gift and make it work as I transition to outstanding health. Spending time at UO has felt like home in this regard. There is just this sense that the people up there are encouraged to be themselves and they view a major portion of their role as the facilitator of these discoveries. Most of you know I went to Chico. I love that place. I felt the thing they did best for me was to learn accountability of self. Sure, there were numerous opportunities to party. And trust me, I chose to take advantage of them. But, on balance, I spent "enough" time on studies to gather a solid academic education. The thing I learned at Chico that many students at other institutions didn't, was the social, balance, accountability education. It has been invaluable in my life! I REALLY BELIEVE THAT UO WILL DO A BETTER JOB THAN CHICO DID FOR ME, AND THAT IS AMAZING. As a parent, it doesn't get any better than that for me.

I also left UO with the confidence that Blair has been able to see just how wonderful a college experience can be. I know she will enter school next year with a renewed committment to creating opportunities for herself. I love you Sis and I am so excited for your future.

I really didn't mean to get on such a riff, and I don't intend to sound preachy. I just wanted you to hear how excited I am for Niels and Blair. AND JOYCE AND ME!

Simply put, today's treatment could not have gone any better than it did. Joyce and I arrived at UCSF a little before 7 AM. They drew my blood and and ran the tests STAT so I could begion my chemo at 8:30. Well, each and every one of my levels that they track, white cell counts, red cell counts, magnesium, calcium, etc. came back very normal. As a cancer patient, I love it when someone tells me something is "normal". I want to thank Jime Kelley and Jim Gebhardt for guiding me to Dr. Michael Defino. I know these results would not have been so great without his guidance and Jim and Jim's support. Thanks Jim and Jim, I love you guys. Also, a huge thanks to Joyce, Blair and Niels for tolerating my change in diet and being willing to explore new ways. I know it is not easy, especially for teenagers. Mr. Kelley also led me to Michael Wagner. He practices healing touch. I have only seen him once (so far), but I am also certain that his work to help facilitate energy ovement around my body has been invaluable in my ability to reamin calm and receive treatment. I am counting on it helping me through the likely numerous side effects to come. Thanks Jim, I only know how to repay you with my deep love and care for you and your family.

Back to the details - Receiving the great lab news we proceeded to spend from 8:30 to 3:00 PM being infused with benadryl, cetuximab, hydration, a cocktail of anti-nausea drugs, cisplatin and hydration. We followed this with a trip to the basement for radiation. All along the way they were willing to laugh with me at my stupid jokes. I know I have siad this before, but they are an amazing group of care providers. I don't know who is the CEO of UCSF Med Center, but whoever it is they have done a marvelous job of creating an environment that I am hopeful to replecate at TY. I have been provided anti-nausea drugs that we are hopeful will mitigate the nausea. I am hopeful and continue to follow their many suggestions. My last comment about todays experience is about the other patients that I shared the treatment room with. I think it would help to provide a brief description. This is a room of approximately 20' X 20'. On either side of the room are 3 recliners and in between each recliner is the rolling stand for the infusions. There are three such areas in the "Infusion Center". So, if you 3 or 4 people in one of these areas, the traffic is managemable. This morniong was such a time, but in the afternoon we had 4 pretty amazing people (plus me) receiving treatment. We were able to have some pretty terrific conversations. I am very hopeful I will be able to get to know some of these incredbly courageous people a lot better. I wish them all great health and god speed!

Be well,

Monday, July 21, 2008

And we're off...

In more ways than one we have several new beginnings here. Our weekend to Eugene was a fantastic beginning for Niels as he prepares to head out into the world of higher education. It's also a new beginning for the 3 of us staying in Walnut Creek as we adjust to daily life without his physical presence. We will miss him, but are so proud of him and excited for what is ahead.

Eugene was also a beginning for Blair. She really felt the excitement around the whole "college" experience and is ready to rock her junior year! We look forward to supporting her as she "struts" her way to the end of her high school years. (Inside joke-we were brainstorming all of the synonyms for "walk" when we were "meandering" through UO today - she thought we were being ridiculously nerdy!)

Tomorrow is a new beginning for Glen. Actually, last Monday was the beginning-beginning, but somehow tomorrow feels more like the real beginning of his "path to outstanding health." We head to UCSF at 5:45 am for labwork, infusion (a cocktail of 2 meds, plus Benadryl, anti-nausea meds and who knows what else). This five hour chemo treatment will be followed by his first radiation treatment.

We are as prepared as we'll ever be. We know it will be a long day and a longer 6+ weeks, but we also know that it will be time well-spent! So many wonderful things have happened in the 2 months since Glen's diagnosis. We head down this road knowing that the sun, the moon, the planets, and the stars are aligned and and his results will be outstanding!

Thanks to you all for staying in touch and sending us your strength and love.
Joyce

Saturday, July 19, 2008

A Quick Note . . .

Joyce and I went to see Dr. Dubey yesterday to check me out before my big treatment on Tuesday. No unusual side effects, so we are on track for Tuesday. We had great fun with her and laughed a lot. I hope that can continue . . .

The whole family is headed this morning up to Eugene and introDUCKtion. We are going to have a blast and learn a ton.

More after treatment on Tuesday.

Be well,

Tuesday, July 15, 2008

First Treatment

First of all, thanks to Joyce for helping all of us with posting comments to the blog.

Well, another long day at UCSF yesterday. I had my first infusion of Cetuximab. They started me off with an IV drip of Benedryl. That was a fun "ride". They administer that first because the primary side effect from Cetuximab is acne on your face that make a 16 year old proud. The other "Very Likely" side effects include weakness, headache, fever, dry skin and low magnesium that could lead to muscle cramps or weakness. So far, my only side effect has been a headache that set in last night at 2 AM and overall tiredness. There are many other "Less Likely" side effects that I won't bore you with now. I will be receiving Cetuximab weekly through September 2nd.

The other part of my treatment will begin next Tuesday. That will include Cisplatin and radiation therapy. I will receive 3 infusions of Cisplatin over the course of treatment and radiation every weekday through August 29th plus an extra radiation treatment every Friday. The Cisplatin "Very Likely" side effects are too numerous to list here. One key is to drink enough water to make sure the poison and dead cancer cells get washed through the kidneys. As Dr. Yom says, the kidneys are the septic tank of the body. My mantra heading into Tuesday is "PEE CLEAR!" So if you see me around it just may be in a local toilet going to the bathroom one of 20 plus times a day. Please remind me to drink my water.

Now that we have defined the treatment it seems "doable". My mind is right and I am as physically ready for this as I can be. It is nice to have the scope of the treatment in mind and to have an end in cite.

Many of you know that my son Niels will be a Duck at the University of Oregon this coming fall. I am so proud of him and couldn't be more excited for this phase of his life to begin. It is with great sadness and happiness that I experience this transition. One of the things we were hoping for is to experience introDUCKtion this coming weekend up at Eugene. Well, thanks to Dr. Yom, we will be able to do just that. Thank you Dr. Yom.

Blair has been in San Diego at UCSD since Saturday with Marina and Ashley Peterson. Blair and Marina are there at a volleyball camp pursuing one of their passions. I know it has been great for her to get away, but I miss her a ton.

I will likely not make another posting to the blog until after Tuesday. Wish me luck.

Be well,

Monday, July 14, 2008

hey bloggers

Hi friends and family!
It has come to our attention that some of you may be struggling with how to make a comment on Glen's blog. It seems to be a bit of a challenge for people of a certain...age or generation! So Glen suggested that I post the directions to make sure that we could all participate in the techy world of the 21st century!

The good news is that if you're reading this you have already figured out how to get to his blog. Congratulations! Now to make a comment you go to the bottom of any "post." (A post is any message from Glen or a few other people who have clearance for postings.) At the bottom of each post you will see "# comments". After that you will see an envelope. To make a comment you click on the word "comments." (You use the envelope if you want to forward his blog to another party.)

Once you have done that a new screen comes up. There is a box in which you can write your comment. Under the box is a word/character verification box that you simply re-type in the provided box.

Finally, you must sign up to be a google blogger in the "Google Identity" boxes. (This is assuming that you do not have a blogger address with another entity - thus the other options under the Google Blogger section.) The dot is already filled in green indicating that you will create or use your google blogger account. Your username is your email address and then you must enter a password (that you will remember for your next comment!). The last step is to click on "Publish Your Comment."

Voila! You are officially a blogger! Congratulations. We look forward to reading your comments in the future.

Joyce
PS Glen will provide an update on his first treatment very soon. So that you're not in suspense, I will say that it went very well. He is a trooper!

Sunday, July 13, 2008

As Glen prepares for his first treatment tomorrow - I reflect on special times our family has shared. This photo may be 2 years old, but it celebrates one fabulous vacation together. We always enjoy our vacations - and always seem to be planning the next one. Currently, there is talk of London for Christmas, of course Scotland for Glen in April and we have planned Thanksgiving with the Johnson's in Oregon (gathering our two freshman after their first months at college). Right now we are planning for a healthy Glen and anticipating our travels of the future.

Thank you all for your positive thoughts and encouragement. Your love and support is making such a difference for us all.
Joyce

What a Week!

As with most of my weeks lately, it began and ended with my health. I previously told you about Monday and Tuesday and the items up in the air. Well, they all ended up working out very well. I received an email early Friday morning from Frances (Clinical Trail Coordinator) that I was accepted into the RTOG 0522 Clinical Trial (Yeah!). She also informed me that I was randomized into Arm 2, which includes both Cisplatin and Cetuximab (Triple Yeah!!!). I have not spoken with the doctors yet about the results of the biopsy, MRI or heart scan, but I am assuming that they all turned out "normal" (Yeah!).

Every year for the last 10 years or so I have taken a golf trip with three of my best buddies (Jim, Gregg and Tony). Well truth be told, some years we have taken even two or three trips, but please don't tell Joyce as I always tell her these extra trips are "bidness". Anyway, these trips have been all over the US and even to England and Ireland in 2006. This has become a wonderful tradition among some pretty terrific friends. These traditions evolve and one of the recent evolutions is to make a "big" trip on "big" birthdays. The person we are celebrating for gets to choose, with input from the rest. Well, 2008 is my 50th, so we were scheduled to go to Scotland in September. Mind you, these trips only get altered for some pretty big reasons. In February we learned that Jim's wife Beth was pregnant with their 4th child. This is their "gift" child as they had no plans to add a 4th. I am so happy for them. So, in early April we decided to reschedule for April 2009. Well 2009 happens to be Gregg's 40th (big birthday), so we will be celebrating many things including Gregg's 40th and my outstanding health! But, this left us with a problem. What will we do for 2008? Just so happens that Gregg, who lives in Boston, was going to Hawaii with his girlfriend. So, he came out a few days early and I got to spend a couple of fabulous days with my buddies playing golf. Guys, thanks for so many wonderful and interesting memories. I love you guys!

Friday late afternoon I received a call from Frances. She explained to me the process to come. I will be receiving my first dose of Cetuximab Monday morning. Cetuximab will be administered once a week. A week later I will begin Cisplatin and radiation therapy. TREATMENT IS BEGINNING - TIME TO GET MY MIND RIGHT! No doubt I am frightened, excited, nervous, hopeful, anxious and CONFIDENT!

I have been able to get in a rhythm with this blogging and make a posting every three days or so. The feedback I have received has been very positive. I will do all I can to keep it up and maybe even post more often. I appreciate your feedback very much.

Be well!

Wednesday, July 9, 2008

Update

WOW!

The past two days has been such a whirlwind of activity over at UCSF. On Monday Joyce and I were at UCSF from 6:30 AM to 4:30 PM. The day began with me giving blood and turning in my 24 hour urine sample (I will have to share that story later when we all need a good laugh). It followed with a meeting with the speech pathologist (Joey Thornton - swallowing), meeting with Frances Zhang (Clinical Trial Coordinator), simulation, chest x-ray, meeting with Sarita Dubey - Medical Oncologist, Vascular Access Port flush and tour of the Infusion Center and finally Thyroid Ultrasound and biopsy.

In the middle of all those things, we decided to attempt to take part in the Clinical Trial. That essentially would mean that I would receive the standard protocol treatment plus extra radiation and possibly an extra drug. We will know whether I make it into the trial by the end of this week. We will also know which "Arm" of the trial I am "randomized" into. It all comes down to, of all things, my thyroid. They discovered a nodule on my left thyroid when they performed the contrast ct scan ten days or so ago. They biopsied it on Monday. The doctors think it is a cyst or something similar. If it comes back not cancerous, then they will let me in the trial. If it is cancer, then I will revert to the protocol treatment. Timing is still TBD.

Yesterday was Joyce and my 19th wedding anniversary. We spent the morning with me having an MRI and an ultrasound of my heart (seemed very easy compared to Monday). We did sneak in a lovely breakfast in San Francisco. Breakfast has always been one of those things we love to do. It has been so wonderful to have Joyce back with me at the doctor meetings. She wasn't able to be with me due to some of the trainings she was doing. Joyce is the rock of our family. I know this hasn't been easy for her, but having her by my side has been so important to me keeping a positive attitude and facing this challenge, My confidence level when Joyce is with me soars. Happy Anniversary Hun, I love so much. I look forward to us having a very special 20th anniversary! A good friend reminded my last week that Joyce and my anniversary is actually July 4th, 1985. That is the day we met in The Madison Bear Gardens in Chico. So, July 4th is very special to me for another reason.

There has been so many wonderful responses to my blogging so far - THANK YOU! I will keep it up.

Friday, July 4, 2008

Happy 4th . . . .

Happy 4th of July everybody!

To me 4th of July has always been about family. I grew up from the age of 6 in Rough & Ready, a very small town just down Highway 20 from Grass Valley. It was a very rural upbringing and many of my characteristics, including a keen desire to explore new things, come from that upbringing. Some of my fondest memories are summer explorations with my two older brothers, Steve (4 years older) and Mike (3 years older). We would literally take off hiking in a direction and either come back later that night or a couple days later. I thank them for taking their whiny little brother. Some of my best memories are of 4ths of July. My Dad was integral in the beginning of an event usually held on or very near the 4th in Rough & Ready - Succession Days. It was great fun as a kid. Back in those days we had our own fireworks. I don't recall there being any fireworks displays like we have today. Much of the great fun revolved around buying fireworks. We'd take our haul home at night and set them off. I really think our kids miss out on this great fun.

Since my last update most of what has transpired has been coordinating the remaining medical procedures and doctors appointments that need to be completed prior to starting treatment. On Monday I will be seeing a speech pathologist that specializes in swallowing, Sue Yom (Radiation Oncologist) for Simulation and Sarita Dubey to coordinate chemotherapy. Mixed among those appointments I will be giving a 24 hour urine sample, blood and a chest xray. Finally I will meet with Frances Zhang, the clinical trial coordinator. On Tuesday (Joyce and my 19th anniversary), I have an MRI and a heart exam. These procedures will help establish baselines from which treatment will begin.

Late yesterday I received a call from Frances Zhang. For various reasons it now appears that treatments will begin July 21st. While this was initially disappointing to me, I do understand the need to have the best plan in place before treatment begins. Plus, this will allow me an additional week to get stronger and to prepare for my absence from work. Also, if they will allow me to start on the 22nd, I will be able to go to Eugene for introDUCKtion at the University of Oregon with Niels. That would be wonderful.

Bye for now . . .

Tuesday, July 1, 2008

Update - Sue Yom, MD, PhD; Etc.

A friend shared the following with me yesterday -

There is no such thing as a 'self-made' man. We are made up of thousands of others. Everyone who has ever done a kind deed for us, or spoken one word of encouragement to us, has entered into the make-up of our character and of our thoughts, as well as our success.

I think this says a ton about my life and my career. I have been fortunate to be touched by so many people. And I don't just mean those that have been my "bosses". I mean everyone I have worked with and had the pleasure to know. One of the greatest gifts this whole cancer thing has given me is a better understanding of just this. I have received so many voicemails, emails, cards, notes, etc. Please know that you have all touched me in a very profound way. I AM TRULY BLESSED AND INFINITELY GREATFUL!

I spent most of yesterday afternoon talking to and being examined by Sue Yom, MD PhD. Dr. Yom is a Radiation Oncologist and she has a great sense of humor. I am beginning to understand how big a role laughter will play in my treatment and recovery. It is a constant for the doctors and care providers I have come in contact with at UCSF. I learned a great deal about the radiation aspect of my treatment. She spent considerable time with her hand and fingers in my mouth and throat. According to her I am a great patient. Must be because I didn't bite her or throw up on her.

Dr. Yom said I would be a great candidate for a national protocol clinical study under way at UCSF. (If you want to know more, google it at RTOG 0522). This is great news. I am processing the information and Joyce and I will be making a decision with the aid of our Inner Circle. I again want to thank Jim Kelley, Jim Gebhardt and Sue Edelmann for being there for me and my family. I love them dearly.

Lastly, but certainly not least. We here at TY had an addition to our family. Monica and Tim Lawver brought Michael Timothy Lawver into our world late last Saturday eveneing. I am so happy for them and hope that he brings much joy and fullfillment into their lives. I certainly know they will love him as much as any two parents possibly can.

Bye for now.

Be well!