I am back from the hospital. I thought I would send a note to all my friends that have been so helpful these last few days. Please foreward this to others that I don't have the email address for.
The news: " I'm not dead yet!" I am recovering at home. The cancer is treatable and they are treating it with chemotherapy. If you have wondered about chemo, it is true. You do feel like shit but it will only be for a few months. I never knew Raisin Bran could taste so BAD. I will be sleeping alot and going through 4 cycles of chemo. With luck, I can start doing some work in a few weeks. In the meantime, I carry my own personal vomitorium with me for comfort.
Thanks again for all of your thoughts, prayers, and help. I will let you know of my progress as I get stronger
Here is a not of my thoughts for these first 2+ weeks of Cancer. It is a bit long and for self therapy Don't feel compelted to read it but you may pass it to friends of mine that may have an interest.
A strange ironic calm and freedom fill my mind right now in stark contrast to the first week. "The one that cares the least controls the most", and when you have cancer there is very little that you care about. I find an ironic freedom because "I have Cancer".
It has brought to a sharp focus the brevity and beauty of life. It really makes it easy to see through the mundane amd meaningles bullshit. There is a strong ironic freedom that comes in the three words "I have Cancer". Life really becomes a right now event.
Let me backtrack to the week of darkness. I entered the CT Scan for a 9:00 PM scan. The last one there on a busy machine. They were expecting to see something related to the hernia repair I had 2 months prior. I remember walking into that dark building that night with a preminition, I was saying to myself " Even though I walk through the valley of the shadow of death I fear no evil for thow art with me". It may have been dramatic but it is how I got in the door. I really did have a premonition of some kind. Remember every day up until then had been worse than the one before for about 3 months. I was really ready for some change.
The CT scan that night showed a mass- 10 cm. They still thought it was related to the hernia repair. They expected it to be a big blood clot to be surgically removed so they checked me into stanford that night.
I woke the next day to have my doctor explain it was most likely lynphoma and not related to the hernia. That was thursday AM. Thursday was a day of tests. CT Scans, blood work X-Ray, Ultra sound. etc.
Friday they did surgury to remove a piece of the mass for biopsy and get pathology results for a final diagnosis. Things were leaning to Lynphoma and all the Lynphoma stories came out with people telling me how lucky I was to get that kind of cancer. There was no pathology results over the weekend. Too much trouble for the lab I guess.The only thing that worked over the weekend was my tumor. It kept growing and shut off the circulation to my letf leg. This caused 3 blood clots so they put me on heprin and rat poisin for blood thinner.
Then Monday and Tuesday came with a 99% diagnosis of Lynphoma. On Tuesday I was being prepared for Chemo treatment on Wednesday and feeling quite good about it. The Tuesday night came. It was the darkest point in the event so far. They told me it was not lynphoma. It still might be testicular cancer( a log shot based upon the ultrasound and blood tests) or some other vague cancer that did not have a good recoverability rate. I was devestated. I called my friend Dan Buck and he helped me make it through the night. We relived memories of our common life.
I can tell you from that night that there are different kinds of fear. This was the blackest coldest and most insidious one I have ever felt. I owe much to Dan. I also owe much to the many other friends that have helped me in this week of darkness. Especially Cheryl, WE are good together.
Wednesday brought a string of better days that has not stopped. The prayers must have worked because the longshot of Testicular(treatable) cancer came in. We prepared for chemo on Thursday the 5th of March. Chemo began and I remember nothing from the firsty 3 days. Then I woke up and noticed the tumor was smaller, the pain in my leg was les, the circulation was back(at least the swelling was down) and I was feeling better, I went for a walk for the first time in 8 days. I walked outside and say the sun and it felt great.
I spent one more night in the hospital. Dan had flown down and was staying in the room with me. I had alot of nausea so he was a help through that as well. They finally sent me home with lots of pills, some for nausea, and my own bucket. I used the bucket the first 3 nights home but have gone 2 nights bucket free.
I've done some research on the cancer and even struck up an email corespondence with Lance Armstrong on this. His emails are most uplifting as are those from my many foul wheather friends.
As things have been getting progressively better for the past week I leave this eamil on the high that I started it with. Today was a great day! I played with my children, bought a lemon tree with cheryl, went to the alpine beer garden with my friend Tom Minot, came back and did a family planting of the lemon tree, We ended the day with the family wathching the Star Wars Video. I did not Vomit all day. I say the day through the new eyes of a young child and I feel the electricity of mortality. I really love my wife. Cheryl has been excellent in all ways. I feel like a lucky man. I hope that next week continues as well.
Here is an update for the week. It was a very good week!
I have been corresponding with Lance Armstrong who had the same type of Cancer I did. He was extremely helpful and referred me to the Doctor he used who is a specialist in this type of Cancer. This Doctor is back in Indiana with the University where they are the world leaders in reasearch of this type of Cancer. I recieved the email from Lance on the weekend, so I called the Doctor in Indiana on Monday Morning. He agreed to see me but I had to get out there before Thursday as he was leaving town for a few weeks.
Monday was a busy day. I had to gather all of my medical records from Stanford Hospital that day. I needed to get to My Doctor to get the records released. I needed to make travel arrangements and get things set up for my parents to take care of the kids. We travelled on Tueday back to Indiana. We saw the Doctor on Wednesday and returned Wednesday Night.
I am at the low blood count point in the Chemo Cycle. The Doctor made me wear a mask to avoid infection on the plane. I really looked like a cancer patient. I did use this to my advantage to get the "cancer discount" on airfare and lodging. Why not get some good from this cancer thing.
The visit was excellent! Cheryl went with me and met with the Dr through everything. It was great to have her along. She has been wonderful through this whole process.
He agreed with the diagnosis of my Stanford Dr. but made modifications to the Chemo treatment I was on. These modifications should make the treatment more effective, and less toxic. This is a big help. He wants to lower the dosage of Platinum but increase the number of days in the Cycle. He also wants to eliminate the Bleomycin all together. This could have a big impact on my kidneys in the future.
The biggest impact on my life may be the surgical recommendation. My Stanford Dr. was about to remove both testicles. Maybe next week. That would mean a life of testosterone suppliments as well as increased risk in the future sex life department. Dr. Nichols said that surgery may not be necassary at all, and if it is, he would only remove one testicle. Huge life difference!! If I do need the surgery Cheryl and I decided that I would go back to Indiana to do it. They do hundreds of these every year. I guess the Prince of Spain was just there for one of these procedures.
Dr. Nichols set me up with another patient today, Scott Rhodes. We talked for a few hours and he took Cheryl and I back to the airport. A great guy. He is finishing his chemo now. It was great to talk to him. He is the only person other than Lance that I have had a chance to talk to that has had this disease. It was very reassuring and helpful.
The Dr. wants me to return after the chemo is all done to be part of a clinical trial. They will continue to moniter me with some advanced diagnostics. This could be real helpful in the future as well.
All in all this trip was great and quite possibly a life changing event. I have many people to thank for this. Alex Kushnir picked up my parents from the airport. My Parents for taking care of the kids. Cheryls mother helped me get the medical records. Lance Armstrong helped me get into this Doctor. Cecilia for taking care of Sydnee. Cheryl of course for her tireless and loving help through all of this. And all of my friends that have me in thier thoughts and prayers. I'm sure I've forgotten somebody, sorry but the chemo does effect the memory a bit.
That is the week. I'm in great sprits. I do get tired but I am getting my appetite back. I start the next chemo cycle next week. I'll write another progress report in about a week.
You can keep your humor but it is hard to hold onto denial when you are shedding like a dog in summer. Last week was pretty good. I was recovering the appitite and losing the nasuea of the first round of chemo. This week the hair started coming out. There is something very strange about seeing great quantities of your hair everywhere you put your head. I knew it was going to come out, but it is different when it really happens. I'm OK with it all now. I even let the kids try and pulling out some, they thought that was quite funny.
Cancer is saturating. Every moment has some element of the cancer in it. The chemo cycle lasts 3 weeks. The first week is 5 days of IV of the chemo. The second week is a loss of appetite and nausea. It is real difficult to eat. Food tastes very strange. A real mystery as to how familiar food will taste. The third week the blood count is low, both red and white cells. That means alot of naps and the avoidance of crowds and other sources of infection.The chemo also effects the memory. I know many of you have called or visited and I just don't remember the events. The memory problem, like the hair and blood cell problem, will go away when the chemo is over.
The other thing with cancer is you lose your ability to have any long term planning. It really is day to day. 3 days ago I felt great. 2 days ago I spent in bed because of pain. The pain was induced when they tried to stimulate white blood cell production. Today I see the Dr. again, who knows what tomorrow will bring. A short horizon is how we navigate things now.
The real issue that fills my mind all the time is the surgery. I am always thinking about it in "background" mode. There are 2 legitimate and different positions from my Physicians. The Dr. here wants me to be finished and cured with Cancer when the chemo is over. He does not want me to have to worry about a relapse in 6 or 12 months. He just wants me "cured". The Dr. in Indiana doesn't want to do the surgey unless it is needed. It would be a real impact on my life and he just would prefer to not do it unless it is necassary. Both positions are reasonable. I don't want extra surgury if it is not needed, but I don't want a relapse either. (What I really want is not an option.) Obviously this decision is a little more significant than we usually deal with. The surgery decision should get made fairly quickly though. They want to do the surgery early in the chemotherapy so that if any cancer cells get released during surgery the chemo will kill them. One way or another, this decision will be over fairly soon. Having just recovered from the double hernia surgery another round is particularly uninviting.
On the good side, this should be the good week. The blood cell production should be picking up. My appetitie is returning. Food is tasting pretty normal. The tumor is getting smaller as is the pain and discomfort from the tumor. They don't start the next round of chemo till next week so this should be a good week. Nick has the chicken pox but fortunately I had it as a child. The Dr. says that the chemo should not effect my immunization.
I am in good spirits. Cheryl is as well. I have lots of great friends that have been very helpful through this. Even though denial is impossible the reality of the situation is not that bad. It is curable, I will be cured. It is a good thing that I was so healthy going into this, Chemo is hard. I can't really imagine what it would be like if I wasn't so healthy before. All I need to do is make it through the next 3 months. That is easy, force of will can get me through that.
It is a well known but little awknowledged fact that middle aged men are constantly looking in the mirror. Any chance we get to see our own reflection, we look. What we are searching for is collatoral damage. Lines, wrinkles, grey hair, any sign of our aging. We want to look younger than we really are. We at least want to look younger than the other guy that is our age. Through this process of constant observation we develop a self picture. An image of what we think we should look like.
Imagine the suprise as I continue to check these reflections when I find Jean-Luc Picard standing in the mirror. I don't notice the wrinkles.
This happened 2 days ago. On taking a shower the hair was really coming off. I came out of the shower to a head of very thinned and blotchy hair. It was coming off on everything my head touched. I needed to hit this head on (no pun intended) so I went to the barber and had him shave the rest off. A strange feeling in that chair. I feel pretty good about it now. I even enjoy the attention I get I walk into a room of people. I notice thier eyes focused about 3 inches higher than normal. I know the folically impaired don't really give me any sympathy on this. Thats OK, I'm not looking for any.
I had great news today. I talked to the head of the Indiana Cancer center. I sent out the pre-chemo ultrasound slides from Stanford. He reviewed these slides and said he really doesn't think there is any cancer in either testicle and does not see any need for surgury. He said that monitoring things every few months with ultrasound can detect if there is a cancer there, but he really doesn't think there is. It feels real good not to have this surgery coming up. I'll see my local Dr. on Monday to discuss this. It is sobering to realize that I would have already had the surgery if I didn't go to Indiana.
I start chemo again on Monday. It will go for 5 days. The loss of
appetite and nausea will begin again so I am fattening myself up this
week. Mark Farino just bought me a nice lunch with a big dessert and my
mom has made 4 lemon pies and countless cookies this week as well. This
is the good week. 4 lemon pies, 2 testicles, and lots of cookies.
6th email---sent yesterday
Not much happened this week, it was a chemo week. I predict that in 50 years we will look back on chemo-therapy with the same feelings we hold for the leeches of previous generations of medical science. It's difficult to describe how barbabic chemo is, at least for the mind.
Your brain is split to two parts. One part runs the body, Heart pumping, breathing, even nausea is crontrolled from this part of the brain, no thinking required. The other side of the brain thinks about things and trys to change the world. Well, chemo is where the thinking brain trys to take over things from body control center. The brain says "Its poisin, but it will kill the cancer first". The body control center is going berzerk. "PURGE PURGE, bad toxins have gotten in". They are both right., But there feels to be something wrong that makes your body's control center take this much trauma. This dissonance is the main reason I beleive this therapy will be short lived.
I went to the chemo every day this week. It wipes you out. All I could do after chemo was to just nap. I couldn't keep fluids or food down so why try. I'm glad this weeks over. I am half way done with the chemotherapy! That is a good milestone.
A special thanks again to all those that helped and offered to help this week.
Cheryl has been working on getting the garden in order, It is a comfortable place for a visit. Come on by any time.
I've received alot of questions of what chemo is like. I thought I'd try and describe the chemo and the feelings that go with it while last weeks chemo is still in me. I know I usually use humor in these emails, that probably won't work here.
Chemo is a thief and a thug. It steals parts of your life. It tortures you physically and mentally. It is a slow poison.
It begins with the indignant and violent penetration of an IV. You begin the IV at 8:30 AM and it is over at 4:00 PM. All day you lay in the chair and take numerous bags of fluids and chemo. You try and separate yourself from the situation with music, or reading, or friends, but your still in the chair. The hardest part of this is you know that the chemo is poison. That's the torture. You know that this stuff will hurt your kidneys, destroy your immune system, give you horrendous nausea, fatigue you, etc. To take toxins willingly is wrong. You cannot ignore this thought. You cling to the notion that this treatment will make you better.
First they hydrate you with 2 to 4 liters of fluid. Then, they start the anti-nausea IV, finally the chemo. As the day continues your viens hurt. Mine still hurt from last week. You bring the IV tree with you wherever you go, a constant companion.
The nausea starts in with the first chemo bag. It gets worse every day. Because you are taking "anti-nausea" drugs, you don't vomit but you feel like you should. This feeling gets worse every day for about 10 days. It doesn't feel like the flu. It feels like your body needs to open itself up and get rid of the poison. The nausea changes as the days progess. The first nausea is a direct chemo response. The smell of your own sweat has eneough chemo to set it off. After the chemo is out of your system the nausea is the result of the damage caused by the chemo. The chemo has destroyed the cells that line your stomach and intestines. The nausea is so intense that some people will get nausea by driving to the clinic or seeing the nurse.
Just as the nausea starts to decline your blood count drops. You fatigue from low red count, you are suceptible to infection with the low white count. Bed is your friend and crowds are dangerous. Your mind wants to do things, but you just can't.
One of the most difficult things to lose is the sense of taste. It goes quickly and stays strange for a while. Losing my taste has stolen part of the mornings joy. I used to awake in the morning, begin the coffee, pour the orange juice, and cut some berries. I really enjoyed this part of the day, now it makes me want to throw up.
The thief steals the memory as well. Losing your memory is frieghtening. I'm not talking about forgetting phone numbers. I'm talking about Clintonesque lapses in memory. Honest Cheryl, I don't recall grabbing that woman's breasts.
Just as you begin to recover, the next round of chemo approaches. You try
not to think about it, but you can't help it. The chemo rounds appear to
be cumulative in thier impact. The next time will be worse. Your memory
is still fresh from the last round, and your viens still hurt. Somehow,
you go in again. You do it because each miserable day is one day closer
to the finish.
What have I been doing these past 3 weeks.
We were graced with many visitors over these past few weeks. Cheryl's mother and uncle were her for a while. My childhood friend Chris came down from Seattle.We also had friends from Colorado and Boston. We had numerous day visitors. It was nice. I spent most of my time eating. I was trying to get fattened up for the 3rd round of chemo. This afforded me with multiple milkshakes, cherry pies, and chocolate things. I took eating most seriously.
I also went on a spending spree. It seems that I now realize how short life can be, I tend to want things NOW. The spree has included lawn furniture, a new computer, a fence and a chainsaw. The chainsaw is the most fun.
I also got the DMV to waive a late penalty on the car registration. We were late with our registration because we were in the hospital. The DMV tacked a hefty late fee of $345 to the registration. I called the DMV and explained we were late in paying because I was in the hospital with cancer. He waived the fee. Is that a suprise?
We were brought back to the reality of our situation this week. I was to go in for the 3rd round of chemo on Monday. I did go in and they sent me home because my blood count was too low. They had me test again on Friday. Fridays results indicated the blood count was still low and they wanted to wait another week. This didn't seem right so I called the doctors in Indiana. They were pissed. They were very upset that I had been delayed for treatment the one week and under NO circumstance should we delay another week. He was concerned about compromising the treatment. He called the local doctor and chewed him out. My local doctor then called and said lets start tomorrow morning. I did the first 2 days in the hospital and the remaining three at the clinic. It is proff once again to stay on top of your own care.
So I started Saturday and just completed my 3rd round yesterday. Today I feel week and broken, but I'll get better. It feels good to have only one more round ahead of me, kind of like the bell lap in a bike race.
What have I learned in this?
I went to church on Easter Sunday. As sermon was read, tears filled my eyes like fog filling the lowlands around half moon bay, unexpected at first yet predictable. It was one of those rare occasions when the words were spoken directly to me, it was about my current situation. It was a story about how sometimes life deals us a set of cards that don't look very good. But if we are open to things, often these difficult situations help us in unforeseen ways. I feel this is very true for me. It made me think about what have I really learned, or re-learned.
1) Difficult events stretch our life and broaden it.
You reach highs and lows that were never known. The good and bad, the fear and courage, hope and despair, denial and acceptance, are all expanded. Life's difficulties are the painful tuition in life's school. I don't know why it is this way, it just is.
It is like the growing that occurs from child to adult, and from adult to parent. When my children speak of life, they speak from a short life experience, simple and narrow, but with growing understandings. I listen to their thoughts, and visualize how they might grow as they learn. I look back on my own life in a similar manner. I see the narrow life I was living. It was so narrow that "small things" became "big things". Never again
2) Gardening is Fun.
Somewhere in my memory I see myself as a child, delighted in the mud and dirt. I remember searching through the soil looking for rocks, sand, worms, whatever. I would then plant something and watch it grow. There is a feeling of return when you push dirt through your fingers. Well, these old memories are being resurrected. I am planting and loving it. I forgot how fun it was.
3) Health is pretty damned important.
None of the other things matter without your health. And it can go away real quick. In October I was in Moab riding mountain bikes up and down mountains. In November I was in the ER. The lesson here is don't take it for granted, and don't just trust it to the doctors. Half of them didn't make the top half of their class. Take control of your health care. See a second doctor, go get the best. Trust your own feelings on your own body. And throw a shitblizzard fit if the doctors don't listen. In todays healthcare machine they are trying to increase productivity and lower costs. It is at the patients expense.
4) Life is short.
We all think we know this, at least intellectually, but I didn't really understand it until now. When I was in the hospital I things were turning much worse every day. My leg was swelling inches every day. After 2 days I couldn't walk. I needed more pain medication every day. They found blood clots in my leg. One night it was very dark. I had a lawyer friend come in at 10:30 PM to do a will. It had to be that night. We really don't know how many days we have ahead of us. That was the moment I really understood how short life is.
5) The impact of no Hair.
Hair insulates the head. I never really appreciated how much insulation the hair provided until it was gone. Especially in the wind or rain. Others that are folically challenged have warned me to avoid a burn. So far I have. Crowds Move. I get my own elevator. They let me on first. It's kinda fun. I'm getting used to it.
6) Allowing others to help:
I know what it is like to live this, but I don't know what it is like to be one of you, an observer, friend, or loved one. I don't know what it is like to see this through your eyes. I've had many of you tell me of the impact it has had on you. I've heard how it is healing to see me, or help me, or talk to me. I've learned that me allowing others to help is a healing thing for both parties. This is an unexcpected lesson.
Finally I have some unfortunate news to pass on. Barry Mercer died on Friday Night. Barry was a friend on mine from Sysopsys. He was diagnosed with Lukemia a year ago. When he went in for his checkup on March first they found it had returned. He had been undergoing chemotherapy at El Camino Hopspital. I last spoke with Barry about 2 weeks ago. He was in good spirits at that time looking foreward to a longer fight with this disease. Cancer Sucks.
I am enclosing Erik Olsen's email.
I am very sorry to tell you that Barry died on Friday night. Jeff Gooding and I went to see him that afternoon, but he was too sick. Instead, we spent some time with Cindy who had be helping him for the last month. She is a very strong and brave person for helping Barry during this time.
I don't know about arrangements at this time. I do know that Barry fought
this very hard to the end and never gave up. I am going to remember him