Monday, November 26, 2012
Friday, November 23, 2012
Doing well...starting up the blog once more.
Julie and I are doing fine. It's been nearly three years since the stem cell transplant and I am feeling great. Both oncologist say we will cut back my visits to once each year...next one is in February, 2013, at the Medical Center. There are two hold over "side effects" from my treatments -- neuropathy in my left foot and daily naps. I find I really enjoy the afternoon naps -- very refreshing. The tingling in my left foot is annoying for me but dangerous for my massage therapist when I give an uncontrollable kick of my foot with the first touch.
If there are any pluses from this whole cancer experience, I guess giving myself permission to take a nap, gaining a truer sense of what it means to "be in the present", and allowing myself a regular massage rank right up there.
I am venturing out into social media. I have a Facebook page, twitter account and thought renewing the blog would be a good way to see how this goes in terms of our efforts to stay in touch. I say "our efforts" because Julie, although better at organizing "live" social engagements with friends and family, relies more on my efforts with electronic media to promote and support those relationships.
Julie and I have been blessed with our partnership for 39 years (plus 4 more years that we devoted to exclusive dating)...so far it seems to be working fairly well. We look forward to opportunities to break bread together and the sharing of our thoughts, prayers and joys with family and friends.
Tim.
Sunday, June 13, 2010
100 Days and all is well
Well, folks. It has been 100 days since my stem cell transplant (actually the 100 days was on May 21) and I have been through the follow-up tests. All is well!! No cancer cells were found and I am officially in remission. Whopee!
Julie and I celebrated with a trip to Salt Lake City to visit Andrew and Mary. Mary and her friend, Cara Despain, had an exhibit of their art at the Kayo Gallery and I was determined to see it in person. Here is a link to Mary and Andrew’s creative website: http://www.hankiefrankie.com/. Go to their blog scroll down to the “Into the White” area and a bit farther to see the short videos that Andrew put together along with his music to promote the exhibit. We have very creative children – I am claiming our daughter-in-law, Mary, in that statement -- if you meet her, you will understand why.
Julie and I will be continuing our celebration with a Father’s Day trip to Minneapolis to visit Courtney, Tim and Madeline. We have not seen them since April and Madeline is just a delight that cannot be kept in the shadows. We do “Skype” with them regularly but there is nothing like a real live hug, a kiss on the cheek, and the joy of holding Madeline on your lap to read a book or just having a conversation with her, eyeball to eyeball.
Hope. Having hope does not mean everything will turn out the way you want. Dr. Ellen Davis notes that “there is a difference between hope and a foolish optimism.” She reminds us that there is a “realism that we have to have about hope, [because of] how closely it can be mingled with our despair and yet survive.”
Throughout these past ten months, I can say the hope that I experienced is captured in those words. My diagnosis of cancer invoked fear and dreaded anticipation about the effects of the chemotherapy treatment. Hope had to mingle with my fear of the unknown and all the negative images of the future that the word “cancer” stirs up.
But as I moved closer to that fear and my chemo treatments began I tried to let my fear be embraced by my meditations and the loving support of so many. I realized that, for me, it was critical to stay focused on the present moment. My future would not be changed by my worries. Regrets about the past were no more than vapors of my memory. Now, this moment, was the reality of my life.
Surprisingly, and with the constant presence of a loving companion, in my focus on the moments of the present “all” was well. That’s not to say that there were not times of pain, discomfort and even a moment of despair and loneliness. But I was blessed with a hope that all would be well regardless of the outcome.
Grace and peace,
Tim
Sunday, April 18, 2010
Some catching up to do
I have heard from many of my friends inquiring about the absence in my blog entries. Here’s the answer in three steps: post stem cell fatigue, some minor complications, and taxes. I am doing better in all three areas. The fatigue is gradually lifting, the complications are subsiding, and the taxes are complete. So now I have some catching up to do.
No More Tassels. No More Hassles.
I was discharged from the University of Nebraska Medical Center on February 25th. One week later I had my tassels, aka, Hickman Catheter removed from my left chest. Even though I never mastered the skill of synchronized spinning of the dual ends of the catheter that I fondly referred to as my tassels, I do not miss their absence.
Oh stamina, where art thou?
I fully anticipated returning to work after my discharge. Julie bought me a couple of new shirts and I prepared my lunch menu. The doctor told me that the next thirty days would be a recovery period. “Sure,” I thought to myself, “I will work a few hours and come home to rest in the afternoon.” Oh, contraire. The weekend before my expected return I felt like I was carrying around an anvil. Just the idea of buttoning down the collar on one of my new shirts exhausted me. I succumbed to the bone tiredness, called the office to say “not this week”, and went to bed.
Asphalt or Shaker – You did say shingles, right?
The second week at home from the hospital, my left leg began to tingle and ache. We contacted the oncologist and he proudly predicted that I probably had shingles. This is apparently a side effect of the treatment. But unlike others that I have known who had to deal with shingles around their chest or belly, mine erupted from my left knee and ran down and across my left foot.
Can they make these tubes any smaller?
The shingles diagnosis however did not adequately explain the pain in my left hip and leg. An MRI exam was scheduled and off I skipped – my leg really hurt – to the medical imaging facility. I was invited by the technician to lie down on the hard slab she called a bed. She told me the exam would last about ninety minutes and then pushed the button to move the hard platform slab up and into the opening of the MRI machine.
I was familiar with the MRI since I had an exam a few months ago to check out my brain when the doctors had concern about some abnormal activity – that’s another story. The MRI machine is like a long tube and you are moved inside the tube for the MRI scan. As soon as the platform started to move into the MRI machine I knew this was not going to work. My shoulders were pushed down and squished into the sides of the tube. The technician stopped and tried again with my arms extended over my head; same basic result.
To my good fortune, she suggested I go to a sister facility with a larger tube rather than pulling out the Vaseline and rubbing down my shoulders. I traveled to the other examining site and all went well. Well, as best as can be expected with all the clatter and clanging of the machine and the nearly ninety minutes I had to stay inside with my nose nearly touching the top of the tube.
The diagnosis – bursitis in my left hip. I was off to physical therapy.
Clown cars and examining rooms
How many clowns can come out of that little bitty car at the circus? A similar question came to my mind at the doctor’s office. How many people can fit in this little examining room?
Once the shingles broke out in full bloom on my left leg and foot, Julie and I returned to the doctor’s office. I was in quite a bit of pain and my left big toe was hyper sensitive to the touch. The appointment was set with the physician assistant (PA) as a follow-up. Having never seen shingles, Julie and I wanted confirmation and some guidance.
The PA came in and she brought along a PA student with her. I took off my trousers and they both studied the rash that ran from my knee to my ankle and all around my foot. It was concluded that it could be shingles but they wanted the doctor’s confirmation.
When the doctor came into the room he brought another doctor from India who was here to observe medical care in the U.S.A. and to practice her English. Now we had six people in this tiny room – all looking at my leg and foot. Out came the colored diagram of major nerve paths and a discussion of the pattern of the rash and which nerves were involved.
A few minutes later, in came the doctor’s nurse. She commented on how warm the temperature was in the room. I suggested that it was not so bad without your trousers at which point the doctor gave me permission to put mine back on. “I’d be happy to doctor, but you’ve been sitting on them since you came into the room.” He quickly moved, I retrieved my pants and the room just as quickly cleared out.
Back to work
I returned to the office on March 30th. There are a few accommodations that I have implemented. I work at the office for 3 to 4 hours each day and feel stronger as each week goes by. I discovered that the hard chairs in the Boardroom which I use to believe were very comfortable are unforgiving on my left leg and hip. So, at Julie’s suggestion, I have toted a stadium cushion to meetings in the Boardroom. It provides some relief but after an hour I need to move around. I can walk about two blocks – very slowly – because my left foot hurts, so I drive if the distance is any greater. It is a great feeling to be back and interacting with my staff face-to-face and I am slowly expanding the opportunity to meet with other folks.
Reflections - back to community
I have also been able to return to church and a few activities in the greater community. With each of those opportunities, I have found that I really missed not only being with others but interacting, hearing and observing the stories of life.
One of the experiences I most missed from my absence from work was hearing the stories of our clients. I have intentionally started attending the weekly meetings where our staff presents their interviews with potential clients who are seeking help from our office. Through each story I am reconnecting to a greater community.
Most of the stories relay some hurt or injury experienced by the individual. As each story is shared, there is honor given to those individuals because their story is being heard. As the staff discusses the individual’s situation, there is also a sense of hope and expectation. They know they can not assist everyone. But even to those who we can not help there is a bit of advice or encouragement that is shared back to the individual which affirms not only the individual but also their story.
When I sit in the park or at church, I observe life stories unfolding about me. The love and wisdom of a mother or grandparent is shared as they hold the hand of a small child guiding them along the path by the lake and pointing out the ducks. “What does the duck say?” Genuine long-term friendship is revealed as one elderly person gives support to another as they stand to sing a hymn. A smile of gratitude is shared that for a moment reunites the two and acknowledges an understanding that within the fragility of age is the strength of friendship.
I am not a solitary being. I draw energy from others. The energy comes, not by being passively in the presence of others. It comes from engaging and being a part of a greater community. I am grateful today for that community that has sustained both Julie and me through these past many months and will continue to share our life story.
Grace and peace,
Tim
No More Tassels. No More Hassles.
I was discharged from the University of Nebraska Medical Center on February 25th. One week later I had my tassels, aka, Hickman Catheter removed from my left chest. Even though I never mastered the skill of synchronized spinning of the dual ends of the catheter that I fondly referred to as my tassels, I do not miss their absence.
Oh stamina, where art thou?
I fully anticipated returning to work after my discharge. Julie bought me a couple of new shirts and I prepared my lunch menu. The doctor told me that the next thirty days would be a recovery period. “Sure,” I thought to myself, “I will work a few hours and come home to rest in the afternoon.” Oh, contraire. The weekend before my expected return I felt like I was carrying around an anvil. Just the idea of buttoning down the collar on one of my new shirts exhausted me. I succumbed to the bone tiredness, called the office to say “not this week”, and went to bed.
Asphalt or Shaker – You did say shingles, right?
The second week at home from the hospital, my left leg began to tingle and ache. We contacted the oncologist and he proudly predicted that I probably had shingles. This is apparently a side effect of the treatment. But unlike others that I have known who had to deal with shingles around their chest or belly, mine erupted from my left knee and ran down and across my left foot.
Can they make these tubes any smaller?
The shingles diagnosis however did not adequately explain the pain in my left hip and leg. An MRI exam was scheduled and off I skipped – my leg really hurt – to the medical imaging facility. I was invited by the technician to lie down on the hard slab she called a bed. She told me the exam would last about ninety minutes and then pushed the button to move the hard platform slab up and into the opening of the MRI machine.
I was familiar with the MRI since I had an exam a few months ago to check out my brain when the doctors had concern about some abnormal activity – that’s another story. The MRI machine is like a long tube and you are moved inside the tube for the MRI scan. As soon as the platform started to move into the MRI machine I knew this was not going to work. My shoulders were pushed down and squished into the sides of the tube. The technician stopped and tried again with my arms extended over my head; same basic result.
To my good fortune, she suggested I go to a sister facility with a larger tube rather than pulling out the Vaseline and rubbing down my shoulders. I traveled to the other examining site and all went well. Well, as best as can be expected with all the clatter and clanging of the machine and the nearly ninety minutes I had to stay inside with my nose nearly touching the top of the tube.
The diagnosis – bursitis in my left hip. I was off to physical therapy.
Clown cars and examining rooms
How many clowns can come out of that little bitty car at the circus? A similar question came to my mind at the doctor’s office. How many people can fit in this little examining room?
Once the shingles broke out in full bloom on my left leg and foot, Julie and I returned to the doctor’s office. I was in quite a bit of pain and my left big toe was hyper sensitive to the touch. The appointment was set with the physician assistant (PA) as a follow-up. Having never seen shingles, Julie and I wanted confirmation and some guidance.
The PA came in and she brought along a PA student with her. I took off my trousers and they both studied the rash that ran from my knee to my ankle and all around my foot. It was concluded that it could be shingles but they wanted the doctor’s confirmation.
When the doctor came into the room he brought another doctor from India who was here to observe medical care in the U.S.A. and to practice her English. Now we had six people in this tiny room – all looking at my leg and foot. Out came the colored diagram of major nerve paths and a discussion of the pattern of the rash and which nerves were involved.
A few minutes later, in came the doctor’s nurse. She commented on how warm the temperature was in the room. I suggested that it was not so bad without your trousers at which point the doctor gave me permission to put mine back on. “I’d be happy to doctor, but you’ve been sitting on them since you came into the room.” He quickly moved, I retrieved my pants and the room just as quickly cleared out.
Back to work
I returned to the office on March 30th. There are a few accommodations that I have implemented. I work at the office for 3 to 4 hours each day and feel stronger as each week goes by. I discovered that the hard chairs in the Boardroom which I use to believe were very comfortable are unforgiving on my left leg and hip. So, at Julie’s suggestion, I have toted a stadium cushion to meetings in the Boardroom. It provides some relief but after an hour I need to move around. I can walk about two blocks – very slowly – because my left foot hurts, so I drive if the distance is any greater. It is a great feeling to be back and interacting with my staff face-to-face and I am slowly expanding the opportunity to meet with other folks.
Reflections - back to community
I have also been able to return to church and a few activities in the greater community. With each of those opportunities, I have found that I really missed not only being with others but interacting, hearing and observing the stories of life.
One of the experiences I most missed from my absence from work was hearing the stories of our clients. I have intentionally started attending the weekly meetings where our staff presents their interviews with potential clients who are seeking help from our office. Through each story I am reconnecting to a greater community.
Most of the stories relay some hurt or injury experienced by the individual. As each story is shared, there is honor given to those individuals because their story is being heard. As the staff discusses the individual’s situation, there is also a sense of hope and expectation. They know they can not assist everyone. But even to those who we can not help there is a bit of advice or encouragement that is shared back to the individual which affirms not only the individual but also their story.
When I sit in the park or at church, I observe life stories unfolding about me. The love and wisdom of a mother or grandparent is shared as they hold the hand of a small child guiding them along the path by the lake and pointing out the ducks. “What does the duck say?” Genuine long-term friendship is revealed as one elderly person gives support to another as they stand to sing a hymn. A smile of gratitude is shared that for a moment reunites the two and acknowledges an understanding that within the fragility of age is the strength of friendship.
I am not a solitary being. I draw energy from others. The energy comes, not by being passively in the presence of others. It comes from engaging and being a part of a greater community. I am grateful today for that community that has sustained both Julie and me through these past many months and will continue to share our life story.
Grace and peace,
Tim
Sunday, February 28, 2010
Home Sleep Home
We are home and I sleep. That seems to be the story of our return. Thursday was our return home and the smell, sound (quiet) and comfort of home is so delightful. Our friend and neighbor, Sue, prepared a sign to celebrate our return.
I am surprised how exhausted I feel. It is a physical and emotional release that is not yet satisfied by sleep. But that is what I am getting plenty of – sleep. Not only are we retiring early each evening but I am enjoying a nap each afternoon. As I lay down for my afternoon nap I don’t have any expectation of sleeping – two hours later I wake up feeling more refreshed.
All of this suggests that the forecast by the doctor that I should plan on resting for 30 days after my release from the hospital was correct. Much better forecast than what we have had weather-wise during the past month.
I return to the Medical Center for more testing on the 100th day following the stem cell transplant and will participate in a clinical trial for the next year. As my blood counts improve, the Hickman catheter hanging on the outside of my left chest will be removed. That will be a wonderful day. The port under my skin on my right chest will remain for at least a year.
Julie and I are so thankful for our return home. We will rest, recover our strength and continue to give thanks for the completion of my treatment.
Grace and peace,
Tim.
Wednesday, February 24, 2010
Released!
I have been released and will be heading home tomorrow!! The first item on my agenda when I get home is to lay down in my own bed for my daily nap. The second item is to have a glass of wine. My return to a more robust activity schedule is still a month away.
Julie and I are thankful for the good news and my renewing strength – especially those stem cells that are kicking in and doing their best to return me to wholeness and good health.
Grace and peace,
Tim
Julie and I are thankful for the good news and my renewing strength – especially those stem cells that are kicking in and doing their best to return me to wholeness and good health.
Grace and peace,
Tim
Monday, February 22, 2010
Day 12 - Discharged but not yet home
The view is so much improved - I no longer see the side of an old red brick building and the snowy isolation of a small garden. Now, I see the snowy roof tops of old red brick buildings and beyond to the street with all the hubbub of city life.
The other real advantage - I have a roommate! Not a bed mate, but a roommate nonetheless and she is lovely. I am hoping this does not mean I can't still take her for a stroll in the hospital corridors - or is it that she takes me?
I am grateful that the hospital stay is over for me. Being a patient requires patience, endurance and the encouragement of others. In my gratitude for my discharge I also extend encouragement to the other patients on the floor I just left who have been there longer than me and have farther yet to go.
Grace and peace,
Tim.
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