Johnny Cash: “I got Stripes”
Cut 14 from his Folsom Prison album:
“On a Monday I was arrested”;
“On a Tuesday they locked me in the jail”;
“On a Wednesday my trial was attested”;
“On a Thursday they said guilty and the judges gavel fell”.
Yes, it’s me. It’s 4:00 Saturday morning. I’ve been trying to figure out how to write this post since Monday. For some reason this song caught in my head sometime during the night and wouldn’t turn loose. So I guess I will have to try and run with it. Like some of my other posts I’m not exactly sure where this will wind up.
To refresh: (as much for me as for you)
The cancer presented with a seizure on Fathers Day. Two weeks later they had removed the part of the tumor they could, biopsied it and given the bad news diagnosis. A week later I was in initial treatment consisting of daily radiation for 6-weeks in conjunction with taking an oral chemo-drug called Temodar. The goal of treatment for terminal brain cancer is to extend the inevitable by trying to slow the growth. They treat with the tools they have. Every 8-12 weeks they take a comparative reading via an MRI of the brain to give them a read on the success of the treatment. At the first 8-week mark they did an MRI. The hope was that the treatment would hold tumor growth within a 5-15% growth range. Reality was it grew almost 50%. The wise doctors determined that initial treatment wasn’t working and they needed to come up with a new plan. Unfortunately they don’t have many options to choose from. They started me on a new drug called Avastin. This is a drug that is still in trial. There are less than 100 professional write-ups, so success rates are still in the trial and error, day-by-day wait and see stage. I receive the drug once every two-weeks. The drug is delivered intravenously through a drip. I go to the hospital and it takes about 2-5 hours, most of it waiting (about and hour for the actual drip). They wanted to get me on the new treatment as quick as possible so my first treatment was just a bag of Avastin (no companion chemo drug). For my second treatment they added a chemo drug, also administered via drip. The combination didn’t work well together (see Cry, Cry, Cry). So after we got through that episode they decided to continue treatment just with the Avastin. Cancer cells spread by generating new blood vessels within the brain. They use them a roads to find new territory. Avastin “inhibits” the rate of new blood vessel development.
OK, back to Johnny.
On Monday we went to Virginia Mason to get a new MRI to measure the effects of the Avastin treatments. We got lucky and the MRI was done on schedule (early morning) without delay. Next we waited till early afternoon for the image to be processed, delivered to my doctor (neurologist) for review and assessment and then our meeting with her. Given everything that had happened up to that point we were not expecting good news. In fact we were prepared for some pretty unpleasant new.
We finally were moved to the doctors’ exam room. They did the normal blood pressure, weight, and temperature stuff. Then we waited for the doctor. That may have been the longest 20 minutes I can remember spend waiting since waiting for seventh grade 6th period math class to end each day. Marlys and I had pretty long faces. There was a lot of handholding and not much talking.
Then the doctor walked in. She looked like she had just been laid by Brad Pitt. Her walk, smile and attitude lit up the room. I almost started crying just looking at her. No way was she bringing us anything but good news. With no formalities and no preamble she opened right up with “You are going to like what I am going to show you”. When you deliver bad news you take time setting up for it. No set up this time. She came right out and said, “Not only did your tumor not grow, but it actually shrunk!”
While Marlys and I were trying to process what she had said she set up the computer and started pulling up images from the current and previous MRI’s. She showed us how the main tumor had receded by about 20% and the “growing field” had also receded by about 15-20%. She spent a lot of time showing us different cuts and pictures verifying the fact that this was really great news. Marlys got her head straight quickly and started with why, how what next stuff. I was so numb that I’m not sure I processed anything except “month” just turned into “years”.
There weren’t many answers to our questions. Not enough research to know why we got the results we did. Early on she had told me not to let myself become a “statistic”. She said everyone has their own DNA which makes them unique. Unique means I will be different from all other people with the same cancer. I should embrace my uniqueness and measure myself by myself. During that visit I finally understand what she was talking about.
Needless to say we left the hospital in tears. We made it to the car before we started making calls. What a joyous afternoon and evening it was, notifying family and friends that miracles really happen. I think we hugged and cried all night long. It was a god night.
On Tuesday we were scheduled for my next Avastin treatment. The process goes: check-in at treatment center, wait for a treatment room, wait for the doctor (Oncologist) to come and check/verify my physical condition since my last visit. Ask and answer questions, both ways. If he’s happy then he orders the medication and the nurses’ take over.
Virginia Mason uses a team medicine approach (I am very impressed with how well they are at it) so he was already aware of the MRI results. You could se it all over his face as soon as he walked in the door. He congratulated us on the success of the Avastin and told us that he was not going to try and introduce a companion chemo drug (he said there really wasn’t anything available) but we would just continue with the every two-week Avastin treatments. Given Mondays results that sounded like a good plan. Everything was smiles and congratulations, and then I had to open my big mouth and ask a question, “any idea why/how this happened”? A quick explanation about Avastin blocking blood paths, all stuff we all already knew. I couldn’t let it go. I had to ask, “can I expect continued shrinkage?” Sometimes ignorance is bliss.
This is where he told us about how little they actually know about Avastin results. But one thing he felt they did have a track on is that the initial treatments provided the most significant results. He said that the impact of the Avastin would start to diminish significantly within 4-6 months. Talk about going from 100mph to 0 in one sentence. It was like my mind froze. In fact I actually asked him again. Same answer but this time he added the part about “unique” and “DNA”. I was only able to partially listen. But I “heard” what he was saying. We left with our minds spinning.
I had really been anxious to write a new blog post telling everyone about my miracle, but today’s information cast a shadow over Monday’s news. I couldn’t think of what to write. I especially couldn’t think of how to tell the family and friends I’d called on Monday that things had changed, again!
On Wednesday morning I woke up (OK, only partially true – I’m not sure I ever really went to sleep) with a head full of thoughts. The “unique” and “DNA” thing was finally resonating in my defective brain. I mean “what the heck”, on Monday I’m told that my doctor has just seen something she has never seen before, a tumor that actually got smaller, and by a significant measurement. She didn’t actually say the “miracle” word but I could see it all over her face. So what if on Tuesday the Oncologist said that “the very limited information they do have says the effect ‘usually’ diminishes over time”. Add in the “unique” and “DNA” and it takes on a whole different meaning. Didn’t I just prove that I AM UNIQUE! Why should I start thinking that I will just be one of the statistics when I just proved that I am unique!
It will be a long 8-12 weeks till my next MRI. But I will guarantee you that the doctors on my team will be far more anxious to get the results that I will be. I already know what the scan will reveal. I can hardly wait to see the look on her face when she walks into the exam room next time.
On Thursday it was back to focusing on life and the future. Life is good! I love you all. Thanks for all the continued good wishes I receive every day. They are really meaningful to me.
Now if I can just get Johnny out of my head.
Saturday, December 12, 2009
Thursday, November 19, 2009
Cry, cry, cry!
Dear friends,
I hate to do this but I am going to use this post to “cry on your shoulder”. I keep telling myself that this blog is suppose to be a place to build strength and confidence, not seek pity. But the past 14 days have really taken an unexpected toll on me. Maybe somewhere along the way of recalling these events I will be able to find the blessing in these events. At this point I don’t know where it’s going to come from, but that’s the value of this blog to me, finding strength and meaning through writing.
OK, first off my spelling of the cancel drug was way off; it’s spelled “Irina-T-Can”. Every Dr. and nurse made a special point of telling us that they all refer to it as “I-run-to-the-can”. So named because it causes SEVERE diarrhea. I’m not real knowledgeable about diarrhea other that the kind all my kids and grand kids get. You know the time you look back and forth at your spouse pretending like you don’t smell anything and trying to quickly figure out how you can get to another room without getting hit in the back of the head with a flying object. Well, it turns out there is another type of diarrhea, regular bowel movements except at an accelerated rate, like 6-10 per day. Doesn’t sound like a bad thing especially if you don’t realize that with each movement you are losing vital bodily fluids and nutrients, later explained to me as “electrolytes”.
I was soon to learn what the loss of electrolytes does to a body. It starts with a loss of energy. I’m not just talking about being tired, I’m talking about body weakness so severe that it’s a chore to just get out of bed (and remember, I need to get out of bed a lot!) Then the muscles in your body begin to cramp. I mean every muscle, legs, hands, arms, back, feet, throat and neck. Not all at once and not at predictable times. But when they cramp they are severe and painful. Apparently the lose of the electrolytes and body fluids cause the muscles to contract. Of course, at this time I still have no idea why I’m having these symptoms. I’m fatigued to the point where I can’t even get out of bed, I’m having these severe muscle cramps and I can’t stop going to the bathroom. I have to say that I am in absolute misery. I lay in bed each day just wishing that the day would end and just maybe tomorrow will bring me some relief. But that doesn’t happen. Each day is like “groundhog day”, just a miserable as the one before.
After 6-days of this I didn’t think life could get any worse. I was actually thinking that maybe this was the end sneaking up on me. Nothing like I was expecting, but I was actually starting to think that I couldn’t take much more of this misery. Marlys kept pouring fluids into me but it didn’t seem to do much good. My body was so weak I still couldn’t get out of bed. I was sleeping 20 hours a day. But the worse thing was that my mind had stopped functioning. I couldn’t watch TV, I couldn’t read a book, I couldn’t even hold a conversation. Both mind and body were shutting down. I have never felt such despair and hopelessness before. I just wanted it to come to an end.
On Monday night Marlys saw the look in my eyes and called the Dr. and told him something had to be done. He brought us in to the emergency room at midnight. They did their diagnosis, severe dehydration. That night they gave me 3-liters of saline. When I left the hospital I felt this remarkable change. It was like someone had changed bodies with me. I was still very weak, but I felt like I was going to be OK. My mind actually started to function again. I still felt slow and had difficulty engaging in conversation, but at least I could feel my mind responding. Over the next 4-days I was back at the hospital each day for another liter of saline.
Two days after our midnight adventure I woke with a temperature of 102.4. I had been losing my appetite for several days, something that to this point in my process I have not had a problem with. Now I just plain quit eating. I had lost 10-lbs in 7-days. The body weakness was back, the muscle spasms were gone, but my mind was going away again. I started to get that ugly feeling of despair and hopelessness again.
On our next visit to the hospital they diagnosed me with the flue. Along with the saline they started me on two different antibiotics. Marlys took me home, dumped me into bed and went to fill the prescriptions. I guess I should have been feeling pretty good, they had diagnosed, prescribed and now it was up to me to wait it out and get better. I will say I was hopeful, but I was still sleeping 18 hours a day and still couldn’t muster the mental capacity to read a book or have a meaningful conversation. Within a few days I had drifted back into the physical/emotional hell that had been holding me hostage for the past 2-weeks. I told Marlys I couldn’t do it any more, to take me back to the hospital and I wasn’t leaving until they could do something to reverse my slide into hell.
This time the whole cancer team got involved in a diagnosis. They decided that they should put me back on steroids, so they dumped some steroids into my bag of saline and pumped me up. It takes about an hour to drip a liter of saline. And by the way, at least for me it is a very relaxing experience. I’m in a very comfortable recliner, they give me a warm blanket, and I usually listen to music on my I-pod and usually sleep through most of it.
Well, let me tell you, when the doctors get it right, they really get it right. And boy did they hit the nail on the head. When we were finished I felt like a brand new man. When Marlys was walking me to the car “I asked her if we could stop and get dinner”! This coming from a man who hadn’t eaten for almost 7-days. She looked at me like, “who is this guy”?
I don’t know what the hell those steroids did, but whatever it was was a miracle. I have been on them for 3-days now and I am a totally different person. My mind like just “snapped back”. My body is still weak and I have more balance issues than before, but that’s just a “little bitch”. The important thing is that I can process information again. The next morning I actually got out of bed and fixed my own breakfast. I know it doesn’t sound like much, but it was a huge event for me.
In the past 3-days I have gone from total despair and hopelessness to “strapping the gloves back on and getting back into the battle”. I may still be weak of body but it will come back. The important thing is that my mind is back and as I have learned, that’s where the true strength is located. I am so grateful to my doctors and my wife for seeing me through what I hope will be the most terrifying and trying two weeks of my life. I certainly cannot envision any experience that could be worse.
Three days ago I could not have even imagined writing this blog entry. I apologize for being so whinny and negative. But I have never felt so low. And you have all been so supportive that I wanted you to understand not only why I haven’t been blogging, but why I haven’t been returning emails and phone calls. But now I’m back. I am already planning my next blog, and I believe I have found the “blessing” within the experience of the past 2-weeks that I was hoping I would find by writing this. I am anxious to lay it out for all of us to see. Tomorrow.
I love you all, especially you my beautiful and carrying wife, Marlys.
I hate to do this but I am going to use this post to “cry on your shoulder”. I keep telling myself that this blog is suppose to be a place to build strength and confidence, not seek pity. But the past 14 days have really taken an unexpected toll on me. Maybe somewhere along the way of recalling these events I will be able to find the blessing in these events. At this point I don’t know where it’s going to come from, but that’s the value of this blog to me, finding strength and meaning through writing.
OK, first off my spelling of the cancel drug was way off; it’s spelled “Irina-T-Can”. Every Dr. and nurse made a special point of telling us that they all refer to it as “I-run-to-the-can”. So named because it causes SEVERE diarrhea. I’m not real knowledgeable about diarrhea other that the kind all my kids and grand kids get. You know the time you look back and forth at your spouse pretending like you don’t smell anything and trying to quickly figure out how you can get to another room without getting hit in the back of the head with a flying object. Well, it turns out there is another type of diarrhea, regular bowel movements except at an accelerated rate, like 6-10 per day. Doesn’t sound like a bad thing especially if you don’t realize that with each movement you are losing vital bodily fluids and nutrients, later explained to me as “electrolytes”.
I was soon to learn what the loss of electrolytes does to a body. It starts with a loss of energy. I’m not just talking about being tired, I’m talking about body weakness so severe that it’s a chore to just get out of bed (and remember, I need to get out of bed a lot!) Then the muscles in your body begin to cramp. I mean every muscle, legs, hands, arms, back, feet, throat and neck. Not all at once and not at predictable times. But when they cramp they are severe and painful. Apparently the lose of the electrolytes and body fluids cause the muscles to contract. Of course, at this time I still have no idea why I’m having these symptoms. I’m fatigued to the point where I can’t even get out of bed, I’m having these severe muscle cramps and I can’t stop going to the bathroom. I have to say that I am in absolute misery. I lay in bed each day just wishing that the day would end and just maybe tomorrow will bring me some relief. But that doesn’t happen. Each day is like “groundhog day”, just a miserable as the one before.
After 6-days of this I didn’t think life could get any worse. I was actually thinking that maybe this was the end sneaking up on me. Nothing like I was expecting, but I was actually starting to think that I couldn’t take much more of this misery. Marlys kept pouring fluids into me but it didn’t seem to do much good. My body was so weak I still couldn’t get out of bed. I was sleeping 20 hours a day. But the worse thing was that my mind had stopped functioning. I couldn’t watch TV, I couldn’t read a book, I couldn’t even hold a conversation. Both mind and body were shutting down. I have never felt such despair and hopelessness before. I just wanted it to come to an end.
On Monday night Marlys saw the look in my eyes and called the Dr. and told him something had to be done. He brought us in to the emergency room at midnight. They did their diagnosis, severe dehydration. That night they gave me 3-liters of saline. When I left the hospital I felt this remarkable change. It was like someone had changed bodies with me. I was still very weak, but I felt like I was going to be OK. My mind actually started to function again. I still felt slow and had difficulty engaging in conversation, but at least I could feel my mind responding. Over the next 4-days I was back at the hospital each day for another liter of saline.
Two days after our midnight adventure I woke with a temperature of 102.4. I had been losing my appetite for several days, something that to this point in my process I have not had a problem with. Now I just plain quit eating. I had lost 10-lbs in 7-days. The body weakness was back, the muscle spasms were gone, but my mind was going away again. I started to get that ugly feeling of despair and hopelessness again.
On our next visit to the hospital they diagnosed me with the flue. Along with the saline they started me on two different antibiotics. Marlys took me home, dumped me into bed and went to fill the prescriptions. I guess I should have been feeling pretty good, they had diagnosed, prescribed and now it was up to me to wait it out and get better. I will say I was hopeful, but I was still sleeping 18 hours a day and still couldn’t muster the mental capacity to read a book or have a meaningful conversation. Within a few days I had drifted back into the physical/emotional hell that had been holding me hostage for the past 2-weeks. I told Marlys I couldn’t do it any more, to take me back to the hospital and I wasn’t leaving until they could do something to reverse my slide into hell.
This time the whole cancer team got involved in a diagnosis. They decided that they should put me back on steroids, so they dumped some steroids into my bag of saline and pumped me up. It takes about an hour to drip a liter of saline. And by the way, at least for me it is a very relaxing experience. I’m in a very comfortable recliner, they give me a warm blanket, and I usually listen to music on my I-pod and usually sleep through most of it.
Well, let me tell you, when the doctors get it right, they really get it right. And boy did they hit the nail on the head. When we were finished I felt like a brand new man. When Marlys was walking me to the car “I asked her if we could stop and get dinner”! This coming from a man who hadn’t eaten for almost 7-days. She looked at me like, “who is this guy”?
I don’t know what the hell those steroids did, but whatever it was was a miracle. I have been on them for 3-days now and I am a totally different person. My mind like just “snapped back”. My body is still weak and I have more balance issues than before, but that’s just a “little bitch”. The important thing is that I can process information again. The next morning I actually got out of bed and fixed my own breakfast. I know it doesn’t sound like much, but it was a huge event for me.
In the past 3-days I have gone from total despair and hopelessness to “strapping the gloves back on and getting back into the battle”. I may still be weak of body but it will come back. The important thing is that my mind is back and as I have learned, that’s where the true strength is located. I am so grateful to my doctors and my wife for seeing me through what I hope will be the most terrifying and trying two weeks of my life. I certainly cannot envision any experience that could be worse.
Three days ago I could not have even imagined writing this blog entry. I apologize for being so whinny and negative. But I have never felt so low. And you have all been so supportive that I wanted you to understand not only why I haven’t been blogging, but why I haven’t been returning emails and phone calls. But now I’m back. I am already planning my next blog, and I believe I have found the “blessing” within the experience of the past 2-weeks that I was hoping I would find by writing this. I am anxious to lay it out for all of us to see. Tomorrow.
I love you all, especially you my beautiful and carrying wife, Marlys.
Sunday, November 1, 2009
Busy week, new treatment update
It’s been a busy week filled with blessings and confusions. I have received many wonderful and heartfelt messages from friends. Each contact sends me into a reflective stage wondering how and why these friendships developed. I spend a lot of time thinking about each relationship. I recall things that passed as meaningless at the time, but now bring both tears and joy to me. Snippets of conversations, memories of support and sacrifices from all fronts. I find irony in some of the conversations where friends are telling me how much I have helped them with this or that situation, while as I recall it was really them who provided the means. I often recall how proud I was that they would just trust me enough to allow me to comment or offer support (though I know I was usually pretty pushy). But it was always their will, their commitment that brought about the result. I accept that this is probably the definitive definition of ‘friendship”, when two people agree to trust each other and work together to resolve a situation, accepting that the outcome will be what it is and not effect the sincerity of the relationship. Perhaps it is just my current situation that allows me to reflect in this manner (do you think?). But as time passes, I hope to share with my friends one final message; how to recognize the blessings of true friendships. I am in the process of building such a “lesson plan”. I will share it with all of interest very shortly.
Last Wednesday I went in for my second round of “new” treatment. This time they gave me two bags of “refreshing” liquids. One is called Avastin and is designed to block the building of new blood vessels in the brain. Cancer cells have a sneaky way of spreading; they build these roadways out of new blood vessels and then travel to new areas. The Avastin is supposed to retard the “construction” process. I hope it works as well as Obama’s stimulus program. I might live for another 3-5 years.
The second fun bag is a chemo called Irinacan (sp). Somehow it is suppose to take the fight directly to the cancer, kind of like sending in platoon of Navy Seals. Going in I didn’t notice anything, but for the past days my insides feel like someone pumped an aquarium full of goldfish into me. I’m not sure what to feed them, I never know when they are going to sleep or perform their “Sea World” act. I’m told that things should settle down in a few days. I’m just hoping that the Navy “goldfish” are taking this fight seriously. I have to wait six more weeks before they do the next MRI and get a body count to see who is really winning. My money is on the Seals. (sorry for the reference to goldfish, I was only kidding!)
Last Wednesday I went in for my second round of “new” treatment. This time they gave me two bags of “refreshing” liquids. One is called Avastin and is designed to block the building of new blood vessels in the brain. Cancer cells have a sneaky way of spreading; they build these roadways out of new blood vessels and then travel to new areas. The Avastin is supposed to retard the “construction” process. I hope it works as well as Obama’s stimulus program. I might live for another 3-5 years.
The second fun bag is a chemo called Irinacan (sp). Somehow it is suppose to take the fight directly to the cancer, kind of like sending in platoon of Navy Seals. Going in I didn’t notice anything, but for the past days my insides feel like someone pumped an aquarium full of goldfish into me. I’m not sure what to feed them, I never know when they are going to sleep or perform their “Sea World” act. I’m told that things should settle down in a few days. I’m just hoping that the Navy “goldfish” are taking this fight seriously. I have to wait six more weeks before they do the next MRI and get a body count to see who is really winning. My money is on the Seals. (sorry for the reference to goldfish, I was only kidding!)
Contact options
I know that now everyone is comfortable with leaving comments on this blog. For those who wish to communicate directly with me here are some options:
Home email: eridave@comcast.net. Work email: dave@evergreenhvac.com. Home phone: 206-824-7058.
Please feel free to pass on this blog address or any of the other information to anyone who you feel might have an interest.
One last final thing, I accept where I am. I don’t like it, but I accept it. It does not bother me to discuss it. I know that many people are not sure how to approach this subject. Rightly so, I’m not sure I would know how to talk to someone who was in my situation. That’s why I’m giving everyone the green light to just talk to me. Tell me your stories about the loved ones you’ve lost. Tell me your thoughts on religion, life, and death, whatever. Tell me the funny stories about the things we’ve (I’ve) done. I’m interested in knowing what you are thinking. I know you feel sympathy for my family and me. And I know you want to tell me that. So go ahead and tell me. But also tell me about you. Believe it or not, it is really important to me to know how you are doing. The most meaningful things to me right now are remembrances of the good thing that have happened during my life. Help me remember them.
Home email: eridave@comcast.net. Work email: dave@evergreenhvac.com. Home phone: 206-824-7058.
Please feel free to pass on this blog address or any of the other information to anyone who you feel might have an interest.
One last final thing, I accept where I am. I don’t like it, but I accept it. It does not bother me to discuss it. I know that many people are not sure how to approach this subject. Rightly so, I’m not sure I would know how to talk to someone who was in my situation. That’s why I’m giving everyone the green light to just talk to me. Tell me your stories about the loved ones you’ve lost. Tell me your thoughts on religion, life, and death, whatever. Tell me the funny stories about the things we’ve (I’ve) done. I’m interested in knowing what you are thinking. I know you feel sympathy for my family and me. And I know you want to tell me that. So go ahead and tell me. But also tell me about you. Believe it or not, it is really important to me to know how you are doing. The most meaningful things to me right now are remembrances of the good thing that have happened during my life. Help me remember them.
Sunday, October 25, 2009
Catch up time!
I got an email from my friend David Hansen recently asking me why I haven’t been posting to my blog. I guess the answer is that I’ve always had trouble dealing publicly with bad news. Good news is always fun to talk about and I really enjoy sharing good things with people. But when things aren’t so good I tend to try and deal with them privately until I can make them good again. I guess I’ve been in that mode for the past 3-4 weeks. Time to move on.
In early September I completed my initial 6-week Radiation-Chemo treatment. The goal was to try and keep the tumor growth at neutral or at least very minimal growth. Unfortunately the final MRI showed that the tumor had actually grown by about 25%. They tell me that’s a lot, and a “game changer”.
They are in the process of moving me to a new treatment program utilizing a “blood growth blocking” agent and a new type of chemo drug. It is very new, not a lot of history and pretty much the last ditch effort.
Keep in mind; we knew this cancer was “terminal” from the very beginning. It’s just that when you begin the process you have several treatment options and you fill yourself flush with “hope”. And don’t get me wrong, not matter what, hope never goes away. But as you wean your way through the treatment options hope and reality begin a stronger competition for your conscious thought. And over the past few weeks I have come to learn that “terminal” takes on a significantly different reality when it is defined in months rather than years.
While doctors can only pass on their educated guess, and they are each a little different, the consensus seems to be 3-6 months unless the new treatment works (statistically about 40% positive), in which case it could push things out another 3-6 months. Of course there is always the “God” factor. We all know people who have outlived all the statistics (My friend David Hansen’s mother comes to mind). I have already told my neurologist that I plan to screw up all of her case study statistics. She seemed OK with that.
I won’t know how this final treatment is doing for another 2-months. That’s pretty frustrating, but it’s the way it goes. I’m counting on good news but preparing for everything.
One of the reasons I haven’t been writing is because I’ve spent a lot of the past few weeks being angry. Don’t know if I will ever be able to lose the anger completely, but I do seem to be getting past it. All of those who know me know that I have also been working on “a plan”. Of course I started the plan the day of my first seizure. But now the timeline has moved up and I’m simplifying it and trying to share it with my family members. It’s a lot harder than I thought it was going to be, sharing I mean. As I said in the beginning, I’ve always tried to take on the burden of dealing with bad news myself. It’s really difficult finding the courage to share this particular burden.
I think that many of my good friends have already figured it out. I know they have been extending special kindness and prayers. It is so meaningful to me. I thank each and everyone so much. I promise I will never give up hope. And I will always love each and every one of you.
Much more to come
In early September I completed my initial 6-week Radiation-Chemo treatment. The goal was to try and keep the tumor growth at neutral or at least very minimal growth. Unfortunately the final MRI showed that the tumor had actually grown by about 25%. They tell me that’s a lot, and a “game changer”.
They are in the process of moving me to a new treatment program utilizing a “blood growth blocking” agent and a new type of chemo drug. It is very new, not a lot of history and pretty much the last ditch effort.
Keep in mind; we knew this cancer was “terminal” from the very beginning. It’s just that when you begin the process you have several treatment options and you fill yourself flush with “hope”. And don’t get me wrong, not matter what, hope never goes away. But as you wean your way through the treatment options hope and reality begin a stronger competition for your conscious thought. And over the past few weeks I have come to learn that “terminal” takes on a significantly different reality when it is defined in months rather than years.
While doctors can only pass on their educated guess, and they are each a little different, the consensus seems to be 3-6 months unless the new treatment works (statistically about 40% positive), in which case it could push things out another 3-6 months. Of course there is always the “God” factor. We all know people who have outlived all the statistics (My friend David Hansen’s mother comes to mind). I have already told my neurologist that I plan to screw up all of her case study statistics. She seemed OK with that.
I won’t know how this final treatment is doing for another 2-months. That’s pretty frustrating, but it’s the way it goes. I’m counting on good news but preparing for everything.
One of the reasons I haven’t been writing is because I’ve spent a lot of the past few weeks being angry. Don’t know if I will ever be able to lose the anger completely, but I do seem to be getting past it. All of those who know me know that I have also been working on “a plan”. Of course I started the plan the day of my first seizure. But now the timeline has moved up and I’m simplifying it and trying to share it with my family members. It’s a lot harder than I thought it was going to be, sharing I mean. As I said in the beginning, I’ve always tried to take on the burden of dealing with bad news myself. It’s really difficult finding the courage to share this particular burden.
I think that many of my good friends have already figured it out. I know they have been extending special kindness and prayers. It is so meaningful to me. I thank each and everyone so much. I promise I will never give up hope. And I will always love each and every one of you.
Much more to come
Friday, September 25, 2009
More about Evan
Well, I have a new grandson. And what a handsome boy he is. See previous post for pictures and vital statistics.
This is the first child for my second son Adam and his wife Lisa (I have 3 sons and one daughter). Evan was originally scheduled to make his appearance on the 14th, but like his dad he does things on his own schedule. Lisa was admitted to the hospital late morning on the 23rd. Nothing much was happening and her doctor said the baby probably wouldn’t come until late morning on the 24th.
Marlys and I had gone to my monthly support group meeting at Virginia Mason late in the afternoon of the 23rd. On the ride home I noticed that my throat was getting that “cold/flu” feeling. By the time we got home I was sure that I had something unpleasant. Marlys left me to my misery and went to the hospital to check up on Adam and Lisa. Lisa had invited Marlys to be present for the delivery (as if she could have kept her out). Marlys came home and informed me that the baby probably wouldn’t come until the next day, maybe even a day later. We went to bed at 10:30.
At 11:30 the phone rang and Adam said, “If you want to be here for the birth you better hurry up and get down here”. We got dressed and were at the hospital within 18 minutes. I was not invited to attend the birth, but I had already told Adam that I was going to be standing outside the door, first in line to welcome my new grandson to the world.
Evan came into the world at 3:15. At 3:24 I kissed his mother, hugged his father and thanked them for delivering the most precious gift in the world. At 3:26 Evan was in my arms receiving my welcome and blessing and commitment. Nothing in the world can make you appreciate life more than holding such a miracle. God does exist. God does have a plan.
We were back home and in bed shortly after 4:00. Our heads and hearts were filled with love and fulfillment. My problems completely overwhelmed by the blessings of new life.
This is the first child for my second son Adam and his wife Lisa (I have 3 sons and one daughter). Evan was originally scheduled to make his appearance on the 14th, but like his dad he does things on his own schedule. Lisa was admitted to the hospital late morning on the 23rd. Nothing much was happening and her doctor said the baby probably wouldn’t come until late morning on the 24th.
Marlys and I had gone to my monthly support group meeting at Virginia Mason late in the afternoon of the 23rd. On the ride home I noticed that my throat was getting that “cold/flu” feeling. By the time we got home I was sure that I had something unpleasant. Marlys left me to my misery and went to the hospital to check up on Adam and Lisa. Lisa had invited Marlys to be present for the delivery (as if she could have kept her out). Marlys came home and informed me that the baby probably wouldn’t come until the next day, maybe even a day later. We went to bed at 10:30.
At 11:30 the phone rang and Adam said, “If you want to be here for the birth you better hurry up and get down here”. We got dressed and were at the hospital within 18 minutes. I was not invited to attend the birth, but I had already told Adam that I was going to be standing outside the door, first in line to welcome my new grandson to the world.
Evan came into the world at 3:15. At 3:24 I kissed his mother, hugged his father and thanked them for delivering the most precious gift in the world. At 3:26 Evan was in my arms receiving my welcome and blessing and commitment. Nothing in the world can make you appreciate life more than holding such a miracle. God does exist. God does have a plan.
We were back home and in bed shortly after 4:00. Our heads and hearts were filled with love and fulfillment. My problems completely overwhelmed by the blessings of new life.
Why life matters
Adam & Lisa Patton would like to introduce their new son
Evan David Patton
Born 3:15 AM September 24th
9.1 lbs - 21"
10 fingers, 10 toes,
A full head of hair,
As beautiful as his mother,
As big and strong as his father.
"Destined to be a future king!"
This message is brought to you by "one damn proud grandpa"!
Wednesday, September 23, 2009
September 22
I restarted my chemo today. Same stuff, slightly higher dose. I’m not expecting (hoping) the side effects will be minimal if even noticeable. I’ve enjoyed seven days of nothing, no radiation, no chemo. It was bitter sweet. Great to be free of treatment, but frustrating because the effects of the radiation were at their highest. Twice in the past week I overplayed my hand. Trying to ignore the radiation effects (fatigue) and pushing to try and put in a full day of activities. Both times I paid severely the following day(s). The mind/body disconnect is a strange and powerful thing. In spite of the minds power, they have to be kept in sync or there can be a powerful price to pay. Of course I needed to find out the hard way, twice.
My good friends continue to rescue me. Calling me, inviting me to coffee or the movies. Stopping by to watch a game. Offering support and help at every turn. I don’t know if I say it enough, but “Thank You”. It really makes a difference.
Tonight I will go to my second Support Group meeting. I’m anxious to see how it turns out. The first one was like all first meetings, a little awkward. But I came away with two new friends. I doubt if Dennis will be there again, he lives in Alaska. But I hope that Jim will show up. We have been trying to meet up individually for the past 3-weeks, but it seems that every time we set a “play-date”, one of us has a conflict. Anyway, I’m looking forward to tonight’s meeting.
We’re still waiting for my new grandson (Evan) to make his appearance. Seems that he is going to take after his father and be very stubborn. He was supposed to be here on the 14th, but the little devil is still hiding out with his mother. I know she is more than ready to send him out into the world. I’m also sure he will pick the most inconvenient time possible to make his grand entrance. Like I said, he’s Adam’s son all the way.
My good friends continue to rescue me. Calling me, inviting me to coffee or the movies. Stopping by to watch a game. Offering support and help at every turn. I don’t know if I say it enough, but “Thank You”. It really makes a difference.
Tonight I will go to my second Support Group meeting. I’m anxious to see how it turns out. The first one was like all first meetings, a little awkward. But I came away with two new friends. I doubt if Dennis will be there again, he lives in Alaska. But I hope that Jim will show up. We have been trying to meet up individually for the past 3-weeks, but it seems that every time we set a “play-date”, one of us has a conflict. Anyway, I’m looking forward to tonight’s meeting.
We’re still waiting for my new grandson (Evan) to make his appearance. Seems that he is going to take after his father and be very stubborn. He was supposed to be here on the 14th, but the little devil is still hiding out with his mother. I know she is more than ready to send him out into the world. I’m also sure he will pick the most inconvenient time possible to make his grand entrance. Like I said, he’s Adam’s son all the way.
Tuesday, September 15, 2009
The "Flogging" finally ends!
Ok, great title, now let me explain. The initial phase of treatment called for 6-weeks of radiation (2:00 PM M-F) and chemo (pills I take at home) every day. Both have side effects. I lost most of my hair (from the radiation not the chemo), not really that big of a deal. Constipation from the chemo, big deal but manageable. What really got me down was the radiation fatigue. They told me the effects would accumulate over time. I had no idea how “accumulative” it would become. Fatigue started setting in around week three and continued to get worse by the day. I initially thought I would be able to handle it pretty well. I lowered my expectations (like they told me to) so I was just going to go to work half a day each morning, do my radiation, then come home, take a nap and be good to go for the rest of the evening. Believe me, that didn’t work out the way i anticipated. Every day I got more and more fatigued. Some mornings I couldn’t get out of bed until 10:00. Some days I just couldn’t do anything. That really depressed me, especially during the 5th and 6th weeks.
Monday the 14th was my last day of radiation. Sunday night I couldn’t get to sleep. Not an unusual situation. But usually I can’t get to sleep because of anxiety. But on Sunday it was entirely different. I was so excited about finally reaching my last treatment that I just wanted to stay up and “savor the moment”. I read until 1:00 AM then went to bed and fell right to sleep. I woke up in the morning at 7:00, felt terrific, got right up and made coffee for Marlys and I. I felt absolutely the best I have felt in 3-months.
I stayed home that morning, we left early, had lunch out and I bought some flowers for the radiation crew (they were such great people throughout the entire process). They have a little ceremony where I get to ring a bell to signal completion of the process. Then they offer me my mask as a keepsake (I "traded" them for the flowers). I had Marlys take some pictures (see above). Then we had to meet with the discharge nurse before going.
I guess I had never really asked many questions about the radiation process. I’m not sure why I decided to ask that day but I did. I asked her what the radiation really did, how it did it and how and why it “accumulated”, and when and how it would dissipate. She explained it to me. It was pretty simple in a technical sort of way. On the way home I was thinking of more interesting ways to “explain it” to those who might inquire. Here’s what I came up with:
You receive a 30-day sentence (for something you didn't even do). On day one they take you to the dungeon and give you three lashes. The lashes open big gashes that bleed and hurt like hell (OK, the radiation doesn’t cause bleeding or hurt – this just makes the story sound better). After the lashing they drag you back to your holding cell where you await the next days torture. Over night the first three lashes begin to close up a little.
On day two they again take you to the dungeon and give you another three lashes. Afterward they take you back to your cell where you spend the night licking your wounds. The first days wounds are a little more healed but will require many more days to completely go away. In the mean time you now have three fresh wounds that need to start the healing process. Days 3 through 30 are repeats of days 1 and 2.
Monday the 14th was my last day of radiation. Sunday night I couldn’t get to sleep. Not an unusual situation. But usually I can’t get to sleep because of anxiety. But on Sunday it was entirely different. I was so excited about finally reaching my last treatment that I just wanted to stay up and “savor the moment”. I read until 1:00 AM then went to bed and fell right to sleep. I woke up in the morning at 7:00, felt terrific, got right up and made coffee for Marlys and I. I felt absolutely the best I have felt in 3-months.
I stayed home that morning, we left early, had lunch out and I bought some flowers for the radiation crew (they were such great people throughout the entire process). They have a little ceremony where I get to ring a bell to signal completion of the process. Then they offer me my mask as a keepsake (I "traded" them for the flowers). I had Marlys take some pictures (see above). Then we had to meet with the discharge nurse before going.
I guess I had never really asked many questions about the radiation process. I’m not sure why I decided to ask that day but I did. I asked her what the radiation really did, how it did it and how and why it “accumulated”, and when and how it would dissipate. She explained it to me. It was pretty simple in a technical sort of way. On the way home I was thinking of more interesting ways to “explain it” to those who might inquire. Here’s what I came up with:
You receive a 30-day sentence (for something you didn't even do). On day one they take you to the dungeon and give you three lashes. The lashes open big gashes that bleed and hurt like hell (OK, the radiation doesn’t cause bleeding or hurt – this just makes the story sound better). After the lashing they drag you back to your holding cell where you await the next days torture. Over night the first three lashes begin to close up a little.
On day two they again take you to the dungeon and give you another three lashes. Afterward they take you back to your cell where you spend the night licking your wounds. The first days wounds are a little more healed but will require many more days to completely go away. In the mean time you now have three fresh wounds that need to start the healing process. Days 3 through 30 are repeats of days 1 and 2.
This brings us to Monday, September 14, the last day of “treatment”. On that day I may have gotten my last three lashes, but I still have a lot lashes received over the past 6-weeks that are in various stages of healing. Even though there will be no new lashes, the healing process will take time.
OK, I said I was going to stay away from the dark side, but you have to admit that this is a pretty cool image. It at least makes me feel like I might have really suffered a little. Painless radiation isn’t nearly as exciting a 30-days of lashings and dungeons.
The truth is the radiation builds up pretty much like the lashings would. It will take a while for the build up to dissipate. Some of my pen pals say they start feeling stronger after just 3-4 days. Others say it took several weeks. I’ve decided to just take it one day at a time. But at least I accept that I reasonably can't put too much pressure on myself. Counter to what my brain tells me, I did try to make a full day of it at work today. I found out after several hours that I’m not as tough as I might have thought I was. Time to listen to the brain and drop the expectations down another notch, at least for a few days. And that’s what I'm going to do.
OK, I said I was going to stay away from the dark side, but you have to admit that this is a pretty cool image. It at least makes me feel like I might have really suffered a little. Painless radiation isn’t nearly as exciting a 30-days of lashings and dungeons.
The truth is the radiation builds up pretty much like the lashings would. It will take a while for the build up to dissipate. Some of my pen pals say they start feeling stronger after just 3-4 days. Others say it took several weeks. I’ve decided to just take it one day at a time. But at least I accept that I reasonably can't put too much pressure on myself. Counter to what my brain tells me, I did try to make a full day of it at work today. I found out after several hours that I’m not as tough as I might have thought I was. Time to listen to the brain and drop the expectations down another notch, at least for a few days. And that’s what I'm going to do.
A new day - a new will.
OK, the last post was pretty depressing. A lot of self-pity. Not what I want to do with this blog. Not the image I want to project.
I want to thank my good friend Jeanie Potter. She responded within hours of the post with some amazing insight. Like a good friend she gently pointed me in a better direction. Jeanie, I love you. Thank you so much. You and Mike will make this trip so much more manageable.
From now on I will spend my time counting my blessings, if I can count that high.
I want to thank my good friend Jeanie Potter. She responded within hours of the post with some amazing insight. Like a good friend she gently pointed me in a better direction. Jeanie, I love you. Thank you so much. You and Mike will make this trip so much more manageable.
From now on I will spend my time counting my blessings, if I can count that high.
Friday, September 11, 2009
Back at it again
It’s been a while since I have posted to the blog. It’s been a rough two weeks and I’m having a hard time finding thoughts to share. I am having a hard time just finding “up”. I really appreciate the phone calls and cards from my friends. I know it is hard for you as well. This isn’t a great subject to have to think about.
I’ve only got two more radiation treatments left. I’m hoping that shortly after that part is over I will regain some of my energy and enthusiasm. I talked to one of the guys in my support group who is about 2 weeks ahead of me in the process. He said that within the first 5 days he started feeling better and it seems to just keep getting better. Gives me something positive to think about. It’s just so hard right now to think about anything positive. I’ve got to get this turned around.
A lot has happened over the past two weeks. Some good stuff, some not so good. I’m a guy who needs to work from a plan, and to make a plan you need facts. The problem is, no one can tell what’s really going on until 4-6 weeks after the radiation is finished. Very frustrating. I’m used to being “in charge”. Cancer has no respect. I guess I’ll have to teach it some. I will be in charge!
I still try to go into work as often as I can. But it’s getting harder to put in even 2-3 hours. It’s like my battery is dead before I even get started. They told me that I would have to “adjust my expectations”. I thought I had. I guess I need to make another adjustment. Right now I’m telling myself, “Two more treatments then the healing begins”.
I’ve only got two more radiation treatments left. I’m hoping that shortly after that part is over I will regain some of my energy and enthusiasm. I talked to one of the guys in my support group who is about 2 weeks ahead of me in the process. He said that within the first 5 days he started feeling better and it seems to just keep getting better. Gives me something positive to think about. It’s just so hard right now to think about anything positive. I’ve got to get this turned around.
A lot has happened over the past two weeks. Some good stuff, some not so good. I’m a guy who needs to work from a plan, and to make a plan you need facts. The problem is, no one can tell what’s really going on until 4-6 weeks after the radiation is finished. Very frustrating. I’m used to being “in charge”. Cancer has no respect. I guess I’ll have to teach it some. I will be in charge!
I still try to go into work as often as I can. But it’s getting harder to put in even 2-3 hours. It’s like my battery is dead before I even get started. They told me that I would have to “adjust my expectations”. I thought I had. I guess I need to make another adjustment. Right now I’m telling myself, “Two more treatments then the healing begins”.
Tuesday, September 1, 2009
Bad News; Prune Juice; Second Opinions
BAD NEWS: Dr. Taylor informed us that she wanted to do a new MRI. So we scheduled it for Thursday August 27th in the morning. They did it at the Federal Way branch of Virginia Mason. We were able to get my radiation treatment rescheduled from our regular 2:00 PM time slot to 12:30. So we did the MRI, had lunch, and then went to Radiation. Then at 4:45 we had to be at the Seattle location for our consult with Dr. Taylor.
Earlier we mentioned Dr. Taylor’s MIR plan to my radiologist, Dr. Pham, and she raised questions about why Dr. Taylor was ordering an MRI at this time. She indicated that it was very unusual. Of course this raised all kinds of red flags in our minds. Dr. Pham said she would consult with Dr. Taylor and see if she could determine the reason. Keep in mind that Virginia Mason uses the team medicine approach, which I really like and which gives me great confidence. Everyone playing on the same team working toward the same goal. Anyway, they talked and the plan stayed in place.
So when we met with Dr. Taylor she had the MRI ready to review. She said she ordered it because in the process of reviewing my previous MRI she had noticed a tumor growth that she wanted a better picture of. The result of the new MRI shows that the tumor was growing pretty fast, not a good thing but typical for the type of cancer I have. Not what she was hoping to see. We were more than a little concerned about her comments. When asked what it means she just said that she would talk to Dr. Pham about adjusting the radiation target. I asked her if it was something that could be removed with another operation and she said probably not, they tend not to perform two operations so close together. She also said that she would probably try a new chemo treatment because she wasn’t sure the current one was doing the job she expected.
All in all it was a very depressing meeting. I have always realized that the doctors can’t really guarantee anything and that every body reacts differently, I just have to accept that they do this for a living and they will try everything at their disposal to manage this for the best possible outcome. My job is to live one day at a time and remain as physically and mentally fit as possible. That I can and do do, even though some times it is really hard.
PRUNE JUICE: One of the unpleasant side effects of chemo is constipation. It affects most patients. I am no exception to that rule. I have been taking over the counter medications since day one, mostly without positive results. One of the radiation nurses suggested Prune Juice or Apricot Nectar. So Marlys picked up a bottle of each. I don’t know if any of you drink Prune Juice on a regular basis, or even occasionally. But if you do, I take my hat off to you and acknowledge you a a better man than I. I took one drink and immediately thought “this stuff has gone rotten”! Marlys assured me that it was perfectly good and I needed to finish my glass. Right! She has a better chance of getting me to mow the lawn during the Seahawks opener.
After a very short conversation which ended with me pouring the entire bottle of Prune Juice down the drain I moved on to the Apricot juice. Wow, this stuff was really good. I liked it so much I drank two and a half glasses (about an hour before bed). Now let me tell you, there is absolutely no reason in the world for any company to waste time or money squeezing prunes into juice when Apricots will produce the same results, “IN SPADES”! And you can take that to the little room with you (3-4 times a night!). I’m not always the fastest learner, but here’s my advice: 6 ounces three times a day. DO NOT OVER DO!
SECOND OPINIONS: Every Tuesday after my radiation treatment I meet with Dr. Pham for a consult. Marlys and I were pretty anxious to talk to her about her impression of Dr. Taylor’s MRI findings. Interestingly, Dr. Pham had a significantly different take on the situation. As she had told us before it was very unusual to take an MRI in the middle of radiation treatments. She said that the MRI often picks up images that are significantly distorted by the radiation treatment. She didn’t dispute Dr. Taylor’s opinion but she suggested that we not read too much into it. She said that she didn’t see anything of significance that caused her to believe that we weren’t getting the results we were looking for. She also cautioned that we wouldn’t actually be able to tell anything for sure until we see the MRI that will be taken 4-6 weeks after the 6-week radiation treatment is completed. I am scheduled to have my 30th treatment on Monday the 14th. She also clarified Dr. Taylor’s statement about trying a different chemo drug. She said it was not the least unusual to try different chemo drugs and she suspected that Dr. Taylor would be having me on both at the same time. Needless to say we felt a whole lot better after our talk with Dr. Pham.
This “process’ is very difficult. So many up's-and-down's. In life we get used to being able to have a certain level of predictability. I am learning that taking it “one day at a time” is not just a slogan, it is a new life style. Not and easy one, but one you “have” to learn to adapt to. I’m working at it. One day at a time.
Earlier we mentioned Dr. Taylor’s MIR plan to my radiologist, Dr. Pham, and she raised questions about why Dr. Taylor was ordering an MRI at this time. She indicated that it was very unusual. Of course this raised all kinds of red flags in our minds. Dr. Pham said she would consult with Dr. Taylor and see if she could determine the reason. Keep in mind that Virginia Mason uses the team medicine approach, which I really like and which gives me great confidence. Everyone playing on the same team working toward the same goal. Anyway, they talked and the plan stayed in place.
So when we met with Dr. Taylor she had the MRI ready to review. She said she ordered it because in the process of reviewing my previous MRI she had noticed a tumor growth that she wanted a better picture of. The result of the new MRI shows that the tumor was growing pretty fast, not a good thing but typical for the type of cancer I have. Not what she was hoping to see. We were more than a little concerned about her comments. When asked what it means she just said that she would talk to Dr. Pham about adjusting the radiation target. I asked her if it was something that could be removed with another operation and she said probably not, they tend not to perform two operations so close together. She also said that she would probably try a new chemo treatment because she wasn’t sure the current one was doing the job she expected.
All in all it was a very depressing meeting. I have always realized that the doctors can’t really guarantee anything and that every body reacts differently, I just have to accept that they do this for a living and they will try everything at their disposal to manage this for the best possible outcome. My job is to live one day at a time and remain as physically and mentally fit as possible. That I can and do do, even though some times it is really hard.
PRUNE JUICE: One of the unpleasant side effects of chemo is constipation. It affects most patients. I am no exception to that rule. I have been taking over the counter medications since day one, mostly without positive results. One of the radiation nurses suggested Prune Juice or Apricot Nectar. So Marlys picked up a bottle of each. I don’t know if any of you drink Prune Juice on a regular basis, or even occasionally. But if you do, I take my hat off to you and acknowledge you a a better man than I. I took one drink and immediately thought “this stuff has gone rotten”! Marlys assured me that it was perfectly good and I needed to finish my glass. Right! She has a better chance of getting me to mow the lawn during the Seahawks opener.
After a very short conversation which ended with me pouring the entire bottle of Prune Juice down the drain I moved on to the Apricot juice. Wow, this stuff was really good. I liked it so much I drank two and a half glasses (about an hour before bed). Now let me tell you, there is absolutely no reason in the world for any company to waste time or money squeezing prunes into juice when Apricots will produce the same results, “IN SPADES”! And you can take that to the little room with you (3-4 times a night!). I’m not always the fastest learner, but here’s my advice: 6 ounces three times a day. DO NOT OVER DO!
SECOND OPINIONS: Every Tuesday after my radiation treatment I meet with Dr. Pham for a consult. Marlys and I were pretty anxious to talk to her about her impression of Dr. Taylor’s MRI findings. Interestingly, Dr. Pham had a significantly different take on the situation. As she had told us before it was very unusual to take an MRI in the middle of radiation treatments. She said that the MRI often picks up images that are significantly distorted by the radiation treatment. She didn’t dispute Dr. Taylor’s opinion but she suggested that we not read too much into it. She said that she didn’t see anything of significance that caused her to believe that we weren’t getting the results we were looking for. She also cautioned that we wouldn’t actually be able to tell anything for sure until we see the MRI that will be taken 4-6 weeks after the 6-week radiation treatment is completed. I am scheduled to have my 30th treatment on Monday the 14th. She also clarified Dr. Taylor’s statement about trying a different chemo drug. She said it was not the least unusual to try different chemo drugs and she suspected that Dr. Taylor would be having me on both at the same time. Needless to say we felt a whole lot better after our talk with Dr. Pham.
This “process’ is very difficult. So many up's-and-down's. In life we get used to being able to have a certain level of predictability. I am learning that taking it “one day at a time” is not just a slogan, it is a new life style. Not and easy one, but one you “have” to learn to adapt to. I’m working at it. One day at a time.
Sunday, August 30, 2009
The "hair cut"
OK, I've decided it's too hard to get caught up all at once so I'm going to start doing this the right way - I'm going to try and start with today and post current events. Then as time permits I will catch up with the past. I find writing to be very therapeutic. Even if most of you will find it boring I don't care. After all, it is my Blog!
Speaking of Blogs, Marlys and I went to the movies last night and watched Julia and Julie. I recommend it to everyone - 5-star! This is how movies should be made.
Now with the hair cut. Much as I have always prized my full head of hair the radiation finally started taking it's toll. On the Monday of my second week I was in the shower and washing my hair and I wound up with a "big" handful of "unattached" hair. I wasn't too shocked; I knew there was a 99% chance it would happen. The radiologist said that the radiation kills the hair follicles around the exit point and the damage would show up between weeks 2-4. Because the radiation is focused to the same spots during the entire 6-week procedure, once the follicles were murdered the first time there would be no further damage. Well, I’ve just finished week 4 and I certainly hope the slaughter has ended. It seemed that every day I would find more victims. Not only was it making me scary looking (think Hannibal Lecter) but it was painful (like having a bad sunburn on your head – all the time). Wearing a hat (I’m not now nor have I ever been a “hat person”) had become mandatory. Not just to keep small children from crying, but also because the Doctors don’t want me to get any direct sun exposure.
So anyway, I’ve been wearing hats. Not only are they uncomfortable but every time I adjust them (remember I’m not a hat guy) or remove them they seem to pull more hairs out of my head. Ouch!
So this morning I told Marlys I wanted her to give me a Buzz cut. I haven’t had a Buzz cut since the Saturday after I got out of 6th grade. She was excited (do you think?) to do it. I was nervous, but I knew I had to do something. I have to say, she did an excellent job. I am very happy with the results. I wish I still had all my hair, but this is so much more comfortable. And now I know how Billy and Mike and Glen and Mac feel. The big difference is: my hair is going to grow back!
Speaking of Blogs, Marlys and I went to the movies last night and watched Julia and Julie. I recommend it to everyone - 5-star! This is how movies should be made.
Now with the hair cut. Much as I have always prized my full head of hair the radiation finally started taking it's toll. On the Monday of my second week I was in the shower and washing my hair and I wound up with a "big" handful of "unattached" hair. I wasn't too shocked; I knew there was a 99% chance it would happen. The radiologist said that the radiation kills the hair follicles around the exit point and the damage would show up between weeks 2-4. Because the radiation is focused to the same spots during the entire 6-week procedure, once the follicles were murdered the first time there would be no further damage. Well, I’ve just finished week 4 and I certainly hope the slaughter has ended. It seemed that every day I would find more victims. Not only was it making me scary looking (think Hannibal Lecter) but it was painful (like having a bad sunburn on your head – all the time). Wearing a hat (I’m not now nor have I ever been a “hat person”) had become mandatory. Not just to keep small children from crying, but also because the Doctors don’t want me to get any direct sun exposure.
So anyway, I’ve been wearing hats. Not only are they uncomfortable but every time I adjust them (remember I’m not a hat guy) or remove them they seem to pull more hairs out of my head. Ouch!
So this morning I told Marlys I wanted her to give me a Buzz cut. I haven’t had a Buzz cut since the Saturday after I got out of 6th grade. She was excited (do you think?) to do it. I was nervous, but I knew I had to do something. I have to say, she did an excellent job. I am very happy with the results. I wish I still had all my hair, but this is so much more comfortable. And now I know how Billy and Mike and Glen and Mac feel. The big difference is: my hair is going to grow back!
Saturday, August 29, 2009
The Plan: Getting ready
So on August 3 I was to begin my first radiation/chemo treatment. But before that we had a number of missions to accomplish. First we had to order a number of drugs. The chemo drug they selected for me is called Temador. Because of side effects I also needed to take an anti-nausea medication. Because of the increased risk of pneumonia they prescribe an antibiotic. Then to try and keep the seizures under control I need to take and anti-seizure medication (I'll need to take it forever - however long that is). Then there is the constipation side effect that requires several pills to help overcome. And last but probably my most hated and needed is the anti-anxiety pills.
If there is any silver lining to be found it is that my insurance seems golden. Once my deductible is spent I have 100% coverage with no limit. I'm sure "they" will be working overtime trying to find a loophole, but we'll face that if it happens. The drugs are really expensive and we don't have the best prescription plan but it is still very manageable. All in all, I feel comfortable that this will not bankrupt my life's efforts.
I didn't like walking into the bathroom and seeing all the prescription bottles sitting on the counter. It sent a signal that I was a sick person. And I didn't like that. So I moved them to the closet. Problem solved!
In order to prepare for the radiation treatment I had to make two trips to the radiation clinic. We are fortunate that we are able to go to St. Josephs Hospital in Federal Way for the radiation treatment. Virginia mason also has a branch hospital in Federal Way about 2-miles from St. Joseph's where I have to go every Friday to get blood work done. This is much more convenient than fighting traffic to get downtown.
On my first visit they made a "mask" for me. The radiation treatment is designed to focus a radiation beam at the major cancel cell groupings and kill as many as possible. In order to be successful they need to radiate the "exact" spots each day. To make it simpler they make a mask (custom fit to my face) that they use each treatment to "bolt" my head down to the treatment table so I am in the same position each day. It is very restrictive. Initially everyone was very concerned about claustrophobic reactions. Fortunately I don't have any. The process of making the mask was simple and actually enjoyable. I told the staff that they should stop scaring people with concerns about claustrophobic issues and just tell them that the process was like going to a very expensive European spa for a facial treatment. They thought that was "interesting' , but probably wouldn't work for them.
A few days later we returned. I was laid out on the table, the mask was bolted down and they took x-ray images of my brain so they could line up the ray-gun with the MRI pictures of the inside of my head. Of course this is all computerized. From then on all they need to do is bolt me in, set the computer, verify location and pull the trigger.
I was pretty anxious about beginning the procedure, especially starting on the chemo pills. Sunday night I began with my first pills. I admit that it was a rough night. I expected all kinds of bad reactions. I was very pleased that I didn't' have any reaction (except to the anxiety).
If there is any silver lining to be found it is that my insurance seems golden. Once my deductible is spent I have 100% coverage with no limit. I'm sure "they" will be working overtime trying to find a loophole, but we'll face that if it happens. The drugs are really expensive and we don't have the best prescription plan but it is still very manageable. All in all, I feel comfortable that this will not bankrupt my life's efforts.
I didn't like walking into the bathroom and seeing all the prescription bottles sitting on the counter. It sent a signal that I was a sick person. And I didn't like that. So I moved them to the closet. Problem solved!
In order to prepare for the radiation treatment I had to make two trips to the radiation clinic. We are fortunate that we are able to go to St. Josephs Hospital in Federal Way for the radiation treatment. Virginia mason also has a branch hospital in Federal Way about 2-miles from St. Joseph's where I have to go every Friday to get blood work done. This is much more convenient than fighting traffic to get downtown.
On my first visit they made a "mask" for me. The radiation treatment is designed to focus a radiation beam at the major cancel cell groupings and kill as many as possible. In order to be successful they need to radiate the "exact" spots each day. To make it simpler they make a mask (custom fit to my face) that they use each treatment to "bolt" my head down to the treatment table so I am in the same position each day. It is very restrictive. Initially everyone was very concerned about claustrophobic reactions. Fortunately I don't have any. The process of making the mask was simple and actually enjoyable. I told the staff that they should stop scaring people with concerns about claustrophobic issues and just tell them that the process was like going to a very expensive European spa for a facial treatment. They thought that was "interesting' , but probably wouldn't work for them.
A few days later we returned. I was laid out on the table, the mask was bolted down and they took x-ray images of my brain so they could line up the ray-gun with the MRI pictures of the inside of my head. Of course this is all computerized. From then on all they need to do is bolt me in, set the computer, verify location and pull the trigger.
I was pretty anxious about beginning the procedure, especially starting on the chemo pills. Sunday night I began with my first pills. I admit that it was a rough night. I expected all kinds of bad reactions. I was very pleased that I didn't' have any reaction (except to the anxiety).
Thursday, August 27, 2009
The "Bad news" phone call
Four days after the surgery my surgeon called to give me the results of the biopsy. He said I had Glioblastoma Multiforme (translation: really bad news!).
We had 4-days before we met with my neurologist (the head of the cancer team), Dr. Lynn Taylor. So I used the 4-days to research all the bad news I could find on the Internet, given the single bit of information I had. Unfortunately there was no shortage of bad news to be found.
When we did finally get to meet with Dr. Taylor she gave me the only bit of good news I have had since June 21. She said the removed tumor was relatively small and that the surgeon seems to have gotten it all. EXCEPT that there was a very large "shadow" in the MRI that she suspected was another growth that hadn't yet formed into a compact tumor.
She explained the treatment plan she wanted me to begin which includes an initial 6-weeks of combined radiation (Monday through Friday) in conjunction with Chemotherapy (pill form) every day for the 6-week period. There would then be a 4-week recovery period (no radiation or chemo). The next 8-month would include one week of chemo (a much larger dose) followed by three weeks of nothing. Repeat, repeat, repeat.
I liked the plan (I like any plan). I was anxious to get started. So, on August 3 I started with my first radiation/chemo treatment.
We had 4-days before we met with my neurologist (the head of the cancer team), Dr. Lynn Taylor. So I used the 4-days to research all the bad news I could find on the Internet, given the single bit of information I had. Unfortunately there was no shortage of bad news to be found.
When we did finally get to meet with Dr. Taylor she gave me the only bit of good news I have had since June 21. She said the removed tumor was relatively small and that the surgeon seems to have gotten it all. EXCEPT that there was a very large "shadow" in the MRI that she suspected was another growth that hadn't yet formed into a compact tumor.
She explained the treatment plan she wanted me to begin which includes an initial 6-weeks of combined radiation (Monday through Friday) in conjunction with Chemotherapy (pill form) every day for the 6-week period. There would then be a 4-week recovery period (no radiation or chemo). The next 8-month would include one week of chemo (a much larger dose) followed by three weeks of nothing. Repeat, repeat, repeat.
I liked the plan (I like any plan). I was anxious to get started. So, on August 3 I started with my first radiation/chemo treatment.
Fathers Day, 2009
On Fathers Day, June 21, 2009 at about 1:30 PM I was putting groceries away when I began experiencing what I call "an out of body" experience. It was like I was standing there watching myself put the groceries away. I know that I wasn't really speaking out loud (?) but in my mind I was actually carrying on a conversation with myself. This lasted about 2-3 minutes. I remember moving upstairs and going to the bathroom. The next thing I remember I was being questioned and prodded by a bunch of firemen. I was on my bedroom floor.
Evidentialy I had experienced a brain seizure. Within the hour I was at Burien Hospital surrounded by my children and family. Within 2 hours they had completed an MRI and identified a brain tumor on the right side just above my ear in the outer portion of the brain. By the next morning they had completed a CT-scan and discovered a growth (presumed to be cancer) on my left kidney. The initial fear was that I had Kidney cancer that had spread to the brain (not good).
Within two days I was discharged from Burien. I went to Virginia Mason which is where my doctors are. They scheduled a PET-Scan which told them that the two cancers were not related. By Friday, June 27 the decision was made to operate to remove the main tumor. I met with the surgeon who had performed surgery on my back a year ago and he agreed to do the brain surgery. We scheduled it for June 30th.
The surgery was successful and 3-days later I was home recovering. I was back at work two days later and feeling like I was going to be just fine.
Evidentialy I had experienced a brain seizure. Within the hour I was at Burien Hospital surrounded by my children and family. Within 2 hours they had completed an MRI and identified a brain tumor on the right side just above my ear in the outer portion of the brain. By the next morning they had completed a CT-scan and discovered a growth (presumed to be cancer) on my left kidney. The initial fear was that I had Kidney cancer that had spread to the brain (not good).
Within two days I was discharged from Burien. I went to Virginia Mason which is where my doctors are. They scheduled a PET-Scan which told them that the two cancers were not related. By Friday, June 27 the decision was made to operate to remove the main tumor. I met with the surgeon who had performed surgery on my back a year ago and he agreed to do the brain surgery. We scheduled it for June 30th.
The surgery was successful and 3-days later I was home recovering. I was back at work two days later and feeling like I was going to be just fine.
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