1. (9) inspire, animate, invigorate, enliven, exalt
(heighten or intensify; "These paintings exalt the imagination")
4. (1) cheer, root on, inspire, urge, urge on, exhort, pep up
(spur on or encourage especially by cheers and shouts; "The crowd cheered the demonstrating strikers")
Today I received a note of encouragement from a friend who had a large marble sized tumor at the base of her brain. The thought of cancer in my brain scares me; I think that must be the worst. She must have energy sapping radiation which thankfully I have not had to do. I have always been inspired watching her ski as I try to keep up and match the vibrant, vigorous and animated joy she can radiate. My hunch is that radiation kicks her tumor better than the medical version.
So today I have a little Reba in me to help lift me out of the daily physical funk that steals my afternoons.
The definitions of inspire above do not quite make clear the most powerful method of inspiration, that demonstrated by example. Today I am much more likely to notice the example of those around my life who are walking through physical, mental, emotional and/or spiritual challenges. Some walk with a grace I aspire to, and others crawl because they no longer can walk. Occasionally I get to share with those human examples a moment of intimate grace, breathing hope and gratitude for life to each other. When I am paying attention and step out of my self, I can notice those moments. Thank you Reba.
Tuesday my daughter Kate and I fly to Bethesda, MD for my blood work Wed and third infusion on Thursday. We are staying to Sunday for father-daughter tourist time in DC.
My obsessing brain wants to figure out all the logistics of timing my energy hours with getting around the subway and walking around the monuments, museums, etc. Go with the flow Bill. Kate on the other hand just wants time with Dad and I don't think she much cares what we do. Having gone a couple times for these infusions by myself, I can tell you that I have learned my lesson: do not go by myself. Thank you Kate.
The additional cancer drug and consequent blood pressure drugs have tried to kick my butt, and they have come close a couple times. That is when all of you kick in with your examples and cheers and prayers and encouragement. You inspire me!
Bill
Sunday, August 29, 2010
Sunday, August 22, 2010
2nd infusion
The elation I felt for 24 hours after 1st infusion has definitely become an evolving routine of sleep, up and active 3 or 4 hours in the morning and 3 or 4 active hours in the evening. My 3 - 5 hour afternoon period of being down and "hinky" has now stretched to 5 - 7 hours. Adding a second drug to treat cancer and two drugs to treat the high blood pressure side effect has doscumbibulated my body. (I twisted that word around, but I LIKE IT!) I have read myself to sleep almost everyday since boyhood, but now the light goes off as I knee into bed. Readily fatigued now accompanies most of my day and driving is pretty much out.
Hopefully this part of my picture is mostly my body adjusting to powerful drugs and it will get better. My attitude remains mostly of gratitude and hope.
I went back to Maryland for the second infusion - left on Tuesday and returned on Thursday. To me that was in and out: fly early Tue, arrive there 3ish, shuttle to NIH by 4pm and then to nearby hotel. On wed, I get blood drawn, pee in a cup, and early Thu with results I go in for consultation with research team followed by hour long infusion. The last shuttle to the airport was at 2:30 and I got there at 2:29.
So now, the travel people want me to do this in Wed and out Thu. It is nigh on impossible to catch flights that could allow that to happen. Maybe red-eye flights could give them a one night turn around, but even the two night wiped me out. Guess where these bright ideas begin: bean counters upstairs.
The third infusion in two more weeks will be there and then I will do one one with my oncologist here. My daughter Kate insists on going with me for number 3 so we bought her ticket with intention of staying a couple extra days to hang father-daughter as tourists in our nation's capitol. However, NIH pays for my trip only for days of service and staying longer does not fit regulations. Whatever, I, Bill G will figure out how to make this happen my way! Uh ohhhhhhhhh, troublesome words. Okay, I will ask for help from HP in navigating bureaucratic regs.
I'm tired now so I'm gonna stop.
Bill
Hopefully this part of my picture is mostly my body adjusting to powerful drugs and it will get better. My attitude remains mostly of gratitude and hope.
I went back to Maryland for the second infusion - left on Tuesday and returned on Thursday. To me that was in and out: fly early Tue, arrive there 3ish, shuttle to NIH by 4pm and then to nearby hotel. On wed, I get blood drawn, pee in a cup, and early Thu with results I go in for consultation with research team followed by hour long infusion. The last shuttle to the airport was at 2:30 and I got there at 2:29.
So now, the travel people want me to do this in Wed and out Thu. It is nigh on impossible to catch flights that could allow that to happen. Maybe red-eye flights could give them a one night turn around, but even the two night wiped me out. Guess where these bright ideas begin: bean counters upstairs.
The third infusion in two more weeks will be there and then I will do one one with my oncologist here. My daughter Kate insists on going with me for number 3 so we bought her ticket with intention of staying a couple extra days to hang father-daughter as tourists in our nation's capitol. However, NIH pays for my trip only for days of service and staying longer does not fit regulations. Whatever, I, Bill G will figure out how to make this happen my way! Uh ohhhhhhhhh, troublesome words. Okay, I will ask for help from HP in navigating bureaucratic regs.
I'm tired now so I'm gonna stop.
Bill
Monday, August 16, 2010
Laughter
My mom beat non Hodgkins Lymphoma twice, once a couple years ago but first about 15 years ago. I remember her telling me about a couple non medical tools she used. Guided imagery: a white knight riding his big white horse through the cancer cells and killing them like moles with his shiny sword.
Laughter therapy: watching comedies, telling and hearing jokes and even fake laughing causes our bodies to release feel good healing chemicals. Which leads me to my experience with cancer and laughing and smiling. I have heard zero cancer humor. I have walked the halls of Mayo Clinic, my oncologists office and now at NIH where I return tomorrow.
The only joke I have heard is: "What do you call a waiting room full of people talking about their maladies?" . . . . "An organ recital!" A lot of folks don't even get it. Sometimes if I tell it I get a looks of disapproval. Disapproval not because I am humorous at the wrong time, but rather most anytime I am around cancer patients. A doctor in her closed little room with me commented how refreshing it was to hear a patient express a sense of humor.
At times I do deal with uncomfortable situation with humor - it can be a method of keeping others off guard and at a distance. But other times for me it is just a human way to find light in a very dark piece of life. Grieving needs a break and it turns out taking that break is healthy. Maybe I can mostly just let loose a contagious smile here and there. I need to laugh.
Since receiving the additional drug, Avastin (Bevacizumab Injection) 2 weeks ago I have felt several old symptoms with a new twist and a couple new symptoms (side effects). My blood pressure became a problem 2 days after injection. 192/104 highest so far as measured by the cuff they sent home with me.
I called the NIH doctor on call, he got back to me in minutes and asked me to begin the blood pressure (BP) med they sent home with me. A few hours later the head of the entire project walked me through adding a second BP drug and monitored my status from 2 thousand miles away. By 11:30pm his time Sunday night, finally the cuff showed a BP of 138/80 and we said good night. Safe, and I have his cell number. He and all the medical staff - I believe my God is working through their hands to help me and the next guy to heal. Thank you!
Since that first Sunday after the first injection I have been dealing with what time is best to take each drug I am on: Tarceva the chemo drug; a preventive type inhaler drug; Lamictal for depression and two BP drugs. That means the pill schedule I use to deal with fatigue/sleeping, mental fogginess, decreased balance, mild diarrhea and the reverse, flushed face and acne, has to change. What I combine and take when has an impact on my functionality at different segments of the day.
I'm not whining, just saying so you know why my mood changes or my voice sounds off or if I wal funny. Beyond that I am so very grateful my chemo does not cause debilitating sickness - I know many have it worse. And yes, Chemo is still my friend.
Bill
Laughter therapy: watching comedies, telling and hearing jokes and even fake laughing causes our bodies to release feel good healing chemicals. Which leads me to my experience with cancer and laughing and smiling. I have heard zero cancer humor. I have walked the halls of Mayo Clinic, my oncologists office and now at NIH where I return tomorrow.
The only joke I have heard is: "What do you call a waiting room full of people talking about their maladies?" . . . . "An organ recital!" A lot of folks don't even get it. Sometimes if I tell it I get a looks of disapproval. Disapproval not because I am humorous at the wrong time, but rather most anytime I am around cancer patients. A doctor in her closed little room with me commented how refreshing it was to hear a patient express a sense of humor.
At times I do deal with uncomfortable situation with humor - it can be a method of keeping others off guard and at a distance. But other times for me it is just a human way to find light in a very dark piece of life. Grieving needs a break and it turns out taking that break is healthy. Maybe I can mostly just let loose a contagious smile here and there. I need to laugh.
Since receiving the additional drug, Avastin (Bevacizumab Injection) 2 weeks ago I have felt several old symptoms with a new twist and a couple new symptoms (side effects). My blood pressure became a problem 2 days after injection. 192/104 highest so far as measured by the cuff they sent home with me.
I called the NIH doctor on call, he got back to me in minutes and asked me to begin the blood pressure (BP) med they sent home with me. A few hours later the head of the entire project walked me through adding a second BP drug and monitored my status from 2 thousand miles away. By 11:30pm his time Sunday night, finally the cuff showed a BP of 138/80 and we said good night. Safe, and I have his cell number. He and all the medical staff - I believe my God is working through their hands to help me and the next guy to heal. Thank you!
Since that first Sunday after the first injection I have been dealing with what time is best to take each drug I am on: Tarceva the chemo drug; a preventive type inhaler drug; Lamictal for depression and two BP drugs. That means the pill schedule I use to deal with fatigue/sleeping, mental fogginess, decreased balance, mild diarrhea and the reverse, flushed face and acne, has to change. What I combine and take when has an impact on my functionality at different segments of the day.
I'm not whining, just saying so you know why my mood changes or my voice sounds off or if I wal funny. Beyond that I am so very grateful my chemo does not cause debilitating sickness - I know many have it worse. And yes, Chemo is still my friend.
Bill
Monday, August 9, 2010
First Infusion
Our National Institute of Health (NIH) in Bethesda, MD, is something all Americans can feel good about. More medical advances than anywhere else in the world are developed here. It is my good fortune to be part of a research project testing the use of two drugs together to treat my highly unusual type of cancer.
The drug I have already been of for 1 1/2 years, Tarceva, is the one I have called my "little white pill". It is designed to poison my cancer cells and it does just that. The problem is that it also poisons other parts of my body and it does not kill all the cancer, just enough to make it grow slowly. Slow it has grown, but grow it has and without an additional intervention will at some point be fatal. Hence the reason I tried so hard these past moths to get into the the drug trial at NIH.
Last week I was at NIH for 4 days for poking, prodding, sticking scanning and analyzing. Throw in enough waiting to drive me nuts (short drive) and the first 3 days were full and wore me out. But then . . . . then . . . finally after all the effort I received my first infusion (means shoot up or IV delivery). I was anxious, scared, excited, willing, trusting, sitting in a laid back medical chair waiting while the additional drug was mixed. This drug, Avastin, is designed to cut of the blood supply to cancer cells. Apparently it is expensive so they don't mix it until I actually show up.
They injected it slowly to help watch for adverse reactions - 90 minutes. I dozed a little. And then it was done. I felt some elation, not too much, but definitely an up sense of accomplishment and hope. I rode the shuttle 2 miles back to my hotel, but feeling too good to sit, I went walking in the rain. Yup, I am from Arizona, but I did have an umbrella. Just happened to walk past a Sushi bar - total accident I am sure, but "as Long as I am here" . . . I felt like celebrating and I thoroughly enjoyed every bite!!
I slept well that night and packed for the plane home the next morning. 5 hour flight but passed quickly with good conversation with row mates. Flight was good and it was beyond awesome to see Jacki, I'm talkin' good to the bone and beyond. And then at home a couple hours later, one of their forewarned side effects kicked in - they even sent me home with a blood pressure cuff. I had high blood pressure for the first time in my life.
The doctor on call Friday night gave me good direction and my BP went down enough to go to sleep, but in the morning it was higher again. I called the on call doc again and he said he was going to call Dr Srinivasan, the Head of Research on this project. The guy called me. He walked me through the entire rest of the day, adding small doses of BP medicine as we went, until at 8:30pm my time, ll:30pm his time, my BP was again low enough to feel safe sleeping. At the beginning of the day, I was clueless about high BP - scared. At the end, I knew he cared and was there for me and I felt safe. I have his personal cell number.
I know I have the chronology a little wrong, but the bottom line is the BP symptom started sooner than expected. They stepped up to the plate and hit a home run for me. I am being treated by highly trained medical professionals doing what they love to do, and getting to do it unhampered by insurance companies. The difference in care from this patient's perspective, between the people at NIH and my insurancized (made that one up) oncologist is . . . well . . . like love or money. Thanks!
I keep taking the little white pill, I get and infusion of Avastin every two weeks. The drug trial question then is, are the two drugs together successful enough to warrant going through the side effects. I am game, and your prayers are requested and welcomed, I love you too!
Bill
The drug I have already been of for 1 1/2 years, Tarceva, is the one I have called my "little white pill". It is designed to poison my cancer cells and it does just that. The problem is that it also poisons other parts of my body and it does not kill all the cancer, just enough to make it grow slowly. Slow it has grown, but grow it has and without an additional intervention will at some point be fatal. Hence the reason I tried so hard these past moths to get into the the drug trial at NIH.
Last week I was at NIH for 4 days for poking, prodding, sticking scanning and analyzing. Throw in enough waiting to drive me nuts (short drive) and the first 3 days were full and wore me out. But then . . . . then . . . finally after all the effort I received my first infusion (means shoot up or IV delivery). I was anxious, scared, excited, willing, trusting, sitting in a laid back medical chair waiting while the additional drug was mixed. This drug, Avastin, is designed to cut of the blood supply to cancer cells. Apparently it is expensive so they don't mix it until I actually show up.
They injected it slowly to help watch for adverse reactions - 90 minutes. I dozed a little. And then it was done. I felt some elation, not too much, but definitely an up sense of accomplishment and hope. I rode the shuttle 2 miles back to my hotel, but feeling too good to sit, I went walking in the rain. Yup, I am from Arizona, but I did have an umbrella. Just happened to walk past a Sushi bar - total accident I am sure, but "as Long as I am here" . . . I felt like celebrating and I thoroughly enjoyed every bite!!
I slept well that night and packed for the plane home the next morning. 5 hour flight but passed quickly with good conversation with row mates. Flight was good and it was beyond awesome to see Jacki, I'm talkin' good to the bone and beyond. And then at home a couple hours later, one of their forewarned side effects kicked in - they even sent me home with a blood pressure cuff. I had high blood pressure for the first time in my life.
The doctor on call Friday night gave me good direction and my BP went down enough to go to sleep, but in the morning it was higher again. I called the on call doc again and he said he was going to call Dr Srinivasan, the Head of Research on this project. The guy called me. He walked me through the entire rest of the day, adding small doses of BP medicine as we went, until at 8:30pm my time, ll:30pm his time, my BP was again low enough to feel safe sleeping. At the beginning of the day, I was clueless about high BP - scared. At the end, I knew he cared and was there for me and I felt safe. I have his personal cell number.
I know I have the chronology a little wrong, but the bottom line is the BP symptom started sooner than expected. They stepped up to the plate and hit a home run for me. I am being treated by highly trained medical professionals doing what they love to do, and getting to do it unhampered by insurance companies. The difference in care from this patient's perspective, between the people at NIH and my insurancized (made that one up) oncologist is . . . well . . . like love or money. Thanks!
I keep taking the little white pill, I get and infusion of Avastin every two weeks. The drug trial question then is, are the two drugs together successful enough to warrant going through the side effects. I am game, and your prayers are requested and welcomed, I love you too!
Bill
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