Friday, December 9, 2011
Friday, November 4, 2011
Clean enough
Posted on Joe's FB 11/3/11
I said it in a status update before, and I'll say it again: There's no way to adequately express the level of anxiety one has on the day of 'follow up scans.' And as I told a lot of people over the past week, these days are bound to be either the best day of your life, or the worst day of your life. You try to stay positive; you rationalize in your mind that the anxiety is needless, and that even if something is detected, there are many, many options for treatment.
And yet as that clock ticks throughout the day, through the vascular appointment, through the nutritionist meeting, through the lab work, through the hour wrapped in a blanket in the cold basement chemo room for CT prep, through the scan itself, and then especially in that little waiting room looking south of Carnegie Avenue, that anxiety builds. A resident - Dr. Haddad - comes in, and does a brief physical. Our angel, Laura, comes in and says that Dr. Rini's almost done reading the scans, and I'm sure that my heart is doing a "Loony Tunes"-like number on my shirt THUMPTHUMP... THUMPTHUMP... THUMPTHUMP...
She leaves. Dr. Rini comes in with a few pieces of paper. And what he's bringing is inconclusive. The scans show those little 'nodules' on my lungs that were noted back in June may, or may not, have grown by 1/100th of a millimeter. He says we should be 'cautious' but not necessarily concerned, and sort of as aside says, "It's my job to be cautious." And I thank God for his caution. I'm waiting for the other shoe to drop... and I ask - "Is that it?" "Yeah," he says. And I feel the weight of a thousand sleepless hours lift.
So the little nodules? They might be cancerous. They might not. They're too small to biopsy, and they've been that way for at least seven months, maybe longer.
A few months ago, I think this news might have driven me nuts. It certainly would have scared the living shit out of me a year ago! But I'm slowly coming to realize that 'inconclusive' isn't a dirty word. Indeed, inconclusive isn't so bad. My scans aren't clean, but they're clean enough. And today wasn't the best day of my life; and today sure as hell wasn't the worst day of my life. Today was a day; a day I woke up grateful to be alive, a day I got to spend with my partner and best friend, a day I was grateful for the awesome prayers, thoughts and support of my friends and family, a day I got to wake up feeling pretty good, and go to bed feeling pretty good. I like today. I have a feeling I'll like tomorrow, too.
THE DETAILS
• I may be off blood thinners by this time next week. Hello, bicycling and salads (I missed you, tabouli); goodbye injections and a bruised belly!
• I am going to be in the compression stockings a LOT longer... 18 more months. But if it means I don't have to do the injections or remember the medication, I'm down with being the freak with a weird leg.
• I learned a lot about changing my diet a little more from nutrition.
• Trial meds going well; no changes in dosage or anything like that.
I said it in a status update before, and I'll say it again: There's no way to adequately express the level of anxiety one has on the day of 'follow up scans.' And as I told a lot of people over the past week, these days are bound to be either the best day of your life, or the worst day of your life. You try to stay positive; you rationalize in your mind that the anxiety is needless, and that even if something is detected, there are many, many options for treatment.
And yet as that clock ticks throughout the day, through the vascular appointment, through the nutritionist meeting, through the lab work, through the hour wrapped in a blanket in the cold basement chemo room for CT prep, through the scan itself, and then especially in that little waiting room looking south of Carnegie Avenue, that anxiety builds. A resident - Dr. Haddad - comes in, and does a brief physical. Our angel, Laura, comes in and says that Dr. Rini's almost done reading the scans, and I'm sure that my heart is doing a "Loony Tunes"-like number on my shirt THUMPTHUMP... THUMPTHUMP... THUMPTHUMP...
She leaves. Dr. Rini comes in with a few pieces of paper. And what he's bringing is inconclusive. The scans show those little 'nodules' on my lungs that were noted back in June may, or may not, have grown by 1/100th of a millimeter. He says we should be 'cautious' but not necessarily concerned, and sort of as aside says, "It's my job to be cautious." And I thank God for his caution. I'm waiting for the other shoe to drop... and I ask - "Is that it?" "Yeah," he says. And I feel the weight of a thousand sleepless hours lift.
So the little nodules? They might be cancerous. They might not. They're too small to biopsy, and they've been that way for at least seven months, maybe longer.
A few months ago, I think this news might have driven me nuts. It certainly would have scared the living shit out of me a year ago! But I'm slowly coming to realize that 'inconclusive' isn't a dirty word. Indeed, inconclusive isn't so bad. My scans aren't clean, but they're clean enough. And today wasn't the best day of my life; and today sure as hell wasn't the worst day of my life. Today was a day; a day I woke up grateful to be alive, a day I got to spend with my partner and best friend, a day I was grateful for the awesome prayers, thoughts and support of my friends and family, a day I got to wake up feeling pretty good, and go to bed feeling pretty good. I like today. I have a feeling I'll like tomorrow, too.
THE DETAILS
• I may be off blood thinners by this time next week. Hello, bicycling and salads (I missed you, tabouli); goodbye injections and a bruised belly!
• I am going to be in the compression stockings a LOT longer... 18 more months. But if it means I don't have to do the injections or remember the medication, I'm down with being the freak with a weird leg.
• I learned a lot about changing my diet a little more from nutrition.
• Trial meds going well; no changes in dosage or anything like that.
Monday, September 26, 2011
Well that was fun.
Monday Joe had a scheduled ultrasound for his left leg that had the blood clot (DVT) in May. He was told to use the outpatient services in the building where he has his doctor and weekly blood work done. A clot was seen in his thigh and his doctor’s office was given the information. His doctor was out because he broke his ankle and so the CNP was taking care of things. When Joe first developed the clot in May it was seen by staff and equipment at the Cleveland Clinic. Local doctors never saw it just from reports and from Joe how extensive it was (from the groin to the calf). What was seen on Monday it was not communicated (or believed when communicated) that what was seen was most likely the old clot still there taking some time to dissolve because of the size of it to begin with. Joe was told to report to the ER for IV Heparin then transport to the Cleveland Clinic. He waited until he heard for sure from Laura (the super hero oncology nurse) because he wanted to see what the CC staff thought. He was thinking that even if there was still a clot it may be better than it had been and he had no issues. He had run a 5K 9/10 and has been running with E&J at cross country practice, and up and down the steps at Lucas Oil Stadium at the Browns game Sunday. Laura agreed (maybe not knowing what was seen or that the local doctors did not know the history of the clot). He was told to not stop at home to pack a bag. He did stop to get something to eat and enjoy since he knew it would be a while before having good food again.
So I’m making plans at work to have the kids taken care up and get my self to Cleveland. When I get out of work at 12:30 I run home to pack him a bag and make to St. Luke’s to see him before he leaves. I make it as the transfer ambulance staff wait for me. It was stressed to Joe they could not wait long for me but they were in no hurry evidently because they opted to make Rt 2 all the way. Joe said it took forever as he was checking the map on his phone. Once he did get to CC the staff there said he had been waiting for him and wondered what took so long. He got to his room but he was disappointed in how long it took to get the Heparin restarted.
Not wanting to freak out E&J by having them be picked up by someone else, I picked them up from school, picked up Mark and went home to have something normal while waiting for my Dad to get there after work (Mom was going to relive Dad and stay the night to get the kids to destations Tuesday morning). After dinner a dear friend took me back to St. Luke’s so I could get Joe’s car and drive to Cleveland. With the rain and Joe’s little car (and the news that a long time friend and teacher of Joe’s was killed that morning in a car accident) I used caution and stayed in the right lane. I did not get to the CC until 9:15. Joe said nothing has happened since he got there not even an ultrasound to see for sure. I stayed an hour just missing the first hour of free parking by 4 minutes. I went to stay with Joe’s aunt and uncle who have been so kind in letting me stay over night so many times. I never did get to see them because they were asleep when I got there and had already left early when I left there at 7 to get back to the hospital.
Back to the hospital (and the traffic on I-77 oh what fun). We waited for hospital transport for more than an hour. Joe could have walked himself (3 times for all the time waiting) there no issues but they needed him to be with transport. Their ultrasound showed that there was no longer a clot below his knee. The thigh area was “inconclusive” because the first ultrasound in May did not get a good image of that area because of the swelling in his leg. So not having a good image to look at they were not able to tell if what he had was new or old. I’m no doctor but I’m really frustrated that given how extensive the clot was in May and what it looks like now my guess is it is still just part of the old one. He has been on blood thinners since the clot in May was discovered so the chances of developing something new was slim.
So they stop his Heparin and let it wear off for a few hours before getting him started on shots of Lovenox. It is a blood thinner he has to injected himself with twice a day. In order to get a better handle the interaction of the trail meds and Coumadin they opted to stop the Coumadin (great we just had a prescription refilled) and start with the Lovenox. The blood coagulation rate, INR, was never right where they wanted it because the interaction with the trail med made the Coumadin not as effective. When he was taken off the trial meds (twice now) his INR gets too high and he has a greater chance of bleeding. The trail meds and Lovenox don’t cause problems together but the Lovenox does tax his kidney some. We can never win.
----
Well it has taken me almost a week to get this written. The latest is that Joe is just tired from the trial meds. He did coach at the Cross Country meet on Saturday and walk/run the Northwest Ohio Race for the Cure on Sunday. If the children/dog would let him get a good night of sleep then he would not be so tired.
We go back to Cleveland for a regular check up Oct 6.
So I’m making plans at work to have the kids taken care up and get my self to Cleveland. When I get out of work at 12:30 I run home to pack him a bag and make to St. Luke’s to see him before he leaves. I make it as the transfer ambulance staff wait for me. It was stressed to Joe they could not wait long for me but they were in no hurry evidently because they opted to make Rt 2 all the way. Joe said it took forever as he was checking the map on his phone. Once he did get to CC the staff there said he had been waiting for him and wondered what took so long. He got to his room but he was disappointed in how long it took to get the Heparin restarted.
Not wanting to freak out E&J by having them be picked up by someone else, I picked them up from school, picked up Mark and went home to have something normal while waiting for my Dad to get there after work (Mom was going to relive Dad and stay the night to get the kids to destations Tuesday morning). After dinner a dear friend took me back to St. Luke’s so I could get Joe’s car and drive to Cleveland. With the rain and Joe’s little car (and the news that a long time friend and teacher of Joe’s was killed that morning in a car accident) I used caution and stayed in the right lane. I did not get to the CC until 9:15. Joe said nothing has happened since he got there not even an ultrasound to see for sure. I stayed an hour just missing the first hour of free parking by 4 minutes. I went to stay with Joe’s aunt and uncle who have been so kind in letting me stay over night so many times. I never did get to see them because they were asleep when I got there and had already left early when I left there at 7 to get back to the hospital.
Back to the hospital (and the traffic on I-77 oh what fun). We waited for hospital transport for more than an hour. Joe could have walked himself (3 times for all the time waiting) there no issues but they needed him to be with transport. Their ultrasound showed that there was no longer a clot below his knee. The thigh area was “inconclusive” because the first ultrasound in May did not get a good image of that area because of the swelling in his leg. So not having a good image to look at they were not able to tell if what he had was new or old. I’m no doctor but I’m really frustrated that given how extensive the clot was in May and what it looks like now my guess is it is still just part of the old one. He has been on blood thinners since the clot in May was discovered so the chances of developing something new was slim.
So they stop his Heparin and let it wear off for a few hours before getting him started on shots of Lovenox. It is a blood thinner he has to injected himself with twice a day. In order to get a better handle the interaction of the trail meds and Coumadin they opted to stop the Coumadin (great we just had a prescription refilled) and start with the Lovenox. The blood coagulation rate, INR, was never right where they wanted it because the interaction with the trail med made the Coumadin not as effective. When he was taken off the trial meds (twice now) his INR gets too high and he has a greater chance of bleeding. The trail meds and Lovenox don’t cause problems together but the Lovenox does tax his kidney some. We can never win.
----
Well it has taken me almost a week to get this written. The latest is that Joe is just tired from the trial meds. He did coach at the Cross Country meet on Saturday and walk/run the Northwest Ohio Race for the Cure on Sunday. If the children/dog would let him get a good night of sleep then he would not be so tired.
We go back to Cleveland for a regular check up Oct 6.
Wednesday, September 14, 2011
Joe posted on his FB 9/13/11
On one of our first trips to Cleveland Clinic in April, Katie said that she saw our fight against cancer as being something like Whack-a-Mole; we’d probably beat it down every time, but something would crop up in another place.
The past month, we’ve been hammering at the same mole over and over again: Kidney function. When last we updated, I’d seen my creatinine levels climb up to nearly-dangerous levels, at which point they pulled me off the experimental drug, and my kidney function returned to a normal level.
So this morning, I had to get a full panel (whatever the hell that means) done at St. Luke’s. Sure as anything, my creatinine level was high – higher than it’s ever been in this adventure. This afternoon, my trial nurse called to say they’re pulling me off drug for a week.
To say that I have mixed feelings is to undersell the situation. On one hand, I’m grateful that we know how to keep Los Uno Kidney functioning. I’m also grateful that, at least for the next week, my fatigue and memory loss ought to improve. But I’m more than a little frightened to lose that chemo security blankey for a week.
Obviously, this is why they do drug trials – to find out if the cure is worse than the disease. And I’m proud that whatever happens, I’m helping to advance scientific knowledge. But I kind of feel like my body is my crappy old car right now. My Corolla’s engine light has been on for a year or two; it’s the mass air flow sensor. I clean it two times a year, the mechanic says there’s nothing to worry about, but as you drive down the road you can’t help but notice that light, and estimate the repair payments down the road at some ill-defined point in the future.
I keep trying to convince myself that my body is that Corolla – it may rust, the check engine light may be stuck on, the steering wheel might be a little grody, and the upholstery’s seen better days. But under the hood, as long as you keep up with the routine maintenance, it’ll run forever. Please, God, let my body be a Toyota.
On one of our first trips to Cleveland Clinic in April, Katie said that she saw our fight against cancer as being something like Whack-a-Mole; we’d probably beat it down every time, but something would crop up in another place.
The past month, we’ve been hammering at the same mole over and over again: Kidney function. When last we updated, I’d seen my creatinine levels climb up to nearly-dangerous levels, at which point they pulled me off the experimental drug, and my kidney function returned to a normal level.
So this morning, I had to get a full panel (whatever the hell that means) done at St. Luke’s. Sure as anything, my creatinine level was high – higher than it’s ever been in this adventure. This afternoon, my trial nurse called to say they’re pulling me off drug for a week.
To say that I have mixed feelings is to undersell the situation. On one hand, I’m grateful that we know how to keep Los Uno Kidney functioning. I’m also grateful that, at least for the next week, my fatigue and memory loss ought to improve. But I’m more than a little frightened to lose that chemo security blankey for a week.
Obviously, this is why they do drug trials – to find out if the cure is worse than the disease. And I’m proud that whatever happens, I’m helping to advance scientific knowledge. But I kind of feel like my body is my crappy old car right now. My Corolla’s engine light has been on for a year or two; it’s the mass air flow sensor. I clean it two times a year, the mechanic says there’s nothing to worry about, but as you drive down the road you can’t help but notice that light, and estimate the repair payments down the road at some ill-defined point in the future.
I keep trying to convince myself that my body is that Corolla – it may rust, the check engine light may be stuck on, the steering wheel might be a little grody, and the upholstery’s seen better days. But under the hood, as long as you keep up with the routine maintenance, it’ll run forever. Please, God, let my body be a Toyota.
Thursday, September 1, 2011
Good news from Joe's Cleveland Clinic super hero army. His BUN and Creatinine (indications of kidney function) levels are better after being off the medication for 8 days. So it looks like he does have the drug (Pazopanib) (but we can't say for sure of course) and not the placebo but it is also means when he takes it it hurts the kidneys. Just yesterday there was an amendment to the study to start new participants at 600mg instead of 800mg. So with all of those indicators they started him back at 600mg. Local blood work next week to see how it all looks.
Pazopanib is also interacting with Coumadin. His INR (blood clotting factor) results were such that they had to keep increasing his Coumadin over time to the height of 7.5mg. When he went off Pazopanib his INR went very high- high enough that they had him stop all Cloumadine for a few days. They now have him started on a lower dose and checking again next week when the other kidney function tests are done.
A few things Joe noticed the 8 days he was off drug is he did not feel as tired-even with school starting. That would explain why I have not found him in a puddle at the end of the day like I expected. He also noticed his memory was better. He can't say for sure when it started while on drug but once off it was better. When Joe can't pull baseball stats and dates and explanations from history out of the air then his memory is shot.
Ellie and Joey started back to school last week. They are excited for cross country. Joe is also helping coach cross country this year.
Mark is enjoying his days at the sitters without his pesty older siblings there.
We will all need to run after stuffing ourselves at the Fulton Country Fair this weekend. The best fair in the land!
Pazopanib is also interacting with Coumadin. His INR (blood clotting factor) results were such that they had to keep increasing his Coumadin over time to the height of 7.5mg. When he went off Pazopanib his INR went very high- high enough that they had him stop all Cloumadine for a few days. They now have him started on a lower dose and checking again next week when the other kidney function tests are done.
A few things Joe noticed the 8 days he was off drug is he did not feel as tired-even with school starting. That would explain why I have not found him in a puddle at the end of the day like I expected. He also noticed his memory was better. He can't say for sure when it started while on drug but once off it was better. When Joe can't pull baseball stats and dates and explanations from history out of the air then his memory is shot.
Ellie and Joey started back to school last week. They are excited for cross country. Joe is also helping coach cross country this year.
Mark is enjoying his days at the sitters without his pesty older siblings there.
We will all need to run after stuffing ourselves at the Fulton Country Fair this weekend. The best fair in the land!
Monday, August 1, 2011
Posted by Joe on his FB 7/31/11
I am really embarrassed by how long it has been since I have written an update about my condition. One of the most important lessons through my illness and recovery has been to make time for friends and family, and it’s crazy how once I started feeling better, I started losing sight of that somewhat. So I wanted to take some time to update everyone, because it’s really been a pretty fantastic summer, all things considered.
We’ve been wearing a rut in the Ohio Turnpike since I got discharged, and especially since I got on the clinical trial. Every two weeks, we make our little trip out there. And every two weeks, Katie and I get to explore a little more about and around Cleveland.
The doctor visits, since Memorial Day, have been non-threatening affairs – they take a little bit of blood, a little bit of pee, we get together and talk about how I’m feeling, and all of us make a guess as to whether I’m on drug or placebo. I honestly don’t know; I am tired as hell most of the time. I have never, ever been a napper – and yet most days I have to sneak a little nap in just to operate at a bare-bones level. I’ve had some acne breakouts, which wouldn’t be news… twenty years ago. So, there are some small signs that could be side effects, but none of the big, bad ones. So I’m either the luckiest son-of-a-gun in the world on the side effects, or I’m not on the drug. But no one knows, and I’m OK with that now. It just is. The trips to Cleveland have been made fun by our little adventures along the way. Katie and I hit up a food truck on the edge of sketchiness on the East Side called Seti’s Polish Boys. It was everything my cousin Dan promised it would be; and I should be embarrassed to have eaten something so sinful just minutes after leaving a hospital. When the kids came with us, we stopped at Huntington Beach with the kids on the hottest day of the year, and they can now OFFICIALLY say they went to the beach over summer vacation!
I’ve been spending my weeks in sort of a little routine. Mondays and Tuesdays I do a lot of work for school. I have one wholly new class this year – an OGT 911 course to help our at-risk kids. It’s a one-quarter class, and will be a condensed version of a class I taught the last few years. That one’s pretty much done; daily lesson plans are complete, playbooks are done, everything’s sent off to Printshop. The other course is much more daunting – a reset of AP GOV. I will be teaching AP GOV through distance learning technology to a class that could involve as many as 50 kids using a brand-new technology, with everything THAT entails. This is the course I am very, very nervous about.
Wednesdays, Thursdays, and Fridays are a lot more fun. The kids are home with me, and we do little ‘Daddy School’ assignments and field trips. We’ve been to the Zoo and made a movie about different species, we did a treasure hunt throughout BG, we went to the Fossil Park in Sylvania and learned about prehistory and geology, we went to Toledo Botanical Garden and BG’s Simpson Park to learn a bit about flowers, and Joey has become a little Scorsese in making movies.
The summer has had a few down moments; the new contract at work included a pay cut and a HUGE increase in medical expenses – not what you need when you have a few appointments a month and twice-weekly blood draws. BGSU also fell through this semester, with not enough courses to go around to adjuncts, so that took a bite out of the budget, too. Add to that a couple photo jobs I was finally ready to shoot that fell through… and things could be better. But I’m not nearly as worried about that as I probably should be, and not as worried as I would have been a year ago, or certainly as worried as I would have been three years ago. But by the same token, if a different district comes a-knockin’ over the next year or so, I’ll be listening very, very, very closely. Very closely. Extremely closely.
Running has been slowly, but steadily, improving. Last night I ran/walked a 5K in under 40 minutes for the first time since surgery. I felt horrible, but IT felt great! I understand full well that I’m not going to see a seven-minute mile again, but it sure feels good to just improve a little bit at a time. My current running routine is a run .15 mile, walk .10 mile, repeat for three miles. I’ll stick with that through this week, and see how the spirit moves me next week. First two miles are pretty easy, but the third mile gets pretty rough on me. I am running in minimalist shoes, and with a dippy smile on my face every step of the way. I may have some pain when I run, but I shit you not when I say that I am happier than ever when I am out there on the pavement or trails. I hope my recovery and running, however long I am able to keep it up, serves to show the power of God, the power of love, in our lives. When I find myself really hurting, I just focus on the love of running, the love of life, and somehow, I make it through. It’s pretty awesome, it’s way more than exercise.
By far the biggest development as it relates to my recovery this summer has been an amazing place in Toledo called The Victory Center. I got clued into this place by my colleague and friend, Pam D. It’s a place for cancer patients and their families to plug into sort of the ‘third leg’ of the stool in cancer care. The medical professionals and your personal spiritual guides are two of the legs, but TVC focuses on something that comes from both of the those places; through meditations, spiritual journeying, reiki, sound therapy, reflexology, and most importantly, a sense of community with those who have been on this journey already.
What’s been really amazing about TVC to me is that it seems to be bringing together a lot of the disparate threads of my experience thus far. When everyone’s telling you the same thing – even if they’re using different words – it’s probably worth listening. The main thing comes down to this: From the beginning, from Fr. Mark, to Kate, to the nurses on the 9th floor at Cleveland Clinic, to the book “Dealing with Cancer” from Cecilia Miller, to the guided imagery guy at TVC, to the meditation counselor, almost everyone comes back to a couple of really simple things to understand, but harder to live out: Cancer is a spiritual illness as well as a physical illness, and we are our own best doctors in dealing with that aspect of it; by visualizing the amazing brightness and power of God, and channeling it to the effected parts of the body. And further, it all comes back to the very first thing Fr. Mark said to me when I was first sick in those last days of March: God is love. The opposite of love is fear. Where there is love, there cannot be fear. There cannot be DISS-ease, or as we commonly say, disease. Filling oneself with love, with that amazing light, is the surest way to help ourselves deal with cancer.
Thank you all again for your friendship and your prayers. I love you all, and your continued friendship remains the clearest evidence of God’s love for us.
I am really embarrassed by how long it has been since I have written an update about my condition. One of the most important lessons through my illness and recovery has been to make time for friends and family, and it’s crazy how once I started feeling better, I started losing sight of that somewhat. So I wanted to take some time to update everyone, because it’s really been a pretty fantastic summer, all things considered.
We’ve been wearing a rut in the Ohio Turnpike since I got discharged, and especially since I got on the clinical trial. Every two weeks, we make our little trip out there. And every two weeks, Katie and I get to explore a little more about and around Cleveland.
The doctor visits, since Memorial Day, have been non-threatening affairs – they take a little bit of blood, a little bit of pee, we get together and talk about how I’m feeling, and all of us make a guess as to whether I’m on drug or placebo. I honestly don’t know; I am tired as hell most of the time. I have never, ever been a napper – and yet most days I have to sneak a little nap in just to operate at a bare-bones level. I’ve had some acne breakouts, which wouldn’t be news… twenty years ago. So, there are some small signs that could be side effects, but none of the big, bad ones. So I’m either the luckiest son-of-a-gun in the world on the side effects, or I’m not on the drug. But no one knows, and I’m OK with that now. It just is. The trips to Cleveland have been made fun by our little adventures along the way. Katie and I hit up a food truck on the edge of sketchiness on the East Side called Seti’s Polish Boys. It was everything my cousin Dan promised it would be; and I should be embarrassed to have eaten something so sinful just minutes after leaving a hospital. When the kids came with us, we stopped at Huntington Beach with the kids on the hottest day of the year, and they can now OFFICIALLY say they went to the beach over summer vacation!
I’ve been spending my weeks in sort of a little routine. Mondays and Tuesdays I do a lot of work for school. I have one wholly new class this year – an OGT 911 course to help our at-risk kids. It’s a one-quarter class, and will be a condensed version of a class I taught the last few years. That one’s pretty much done; daily lesson plans are complete, playbooks are done, everything’s sent off to Printshop. The other course is much more daunting – a reset of AP GOV. I will be teaching AP GOV through distance learning technology to a class that could involve as many as 50 kids using a brand-new technology, with everything THAT entails. This is the course I am very, very nervous about.
Wednesdays, Thursdays, and Fridays are a lot more fun. The kids are home with me, and we do little ‘Daddy School’ assignments and field trips. We’ve been to the Zoo and made a movie about different species, we did a treasure hunt throughout BG, we went to the Fossil Park in Sylvania and learned about prehistory and geology, we went to Toledo Botanical Garden and BG’s Simpson Park to learn a bit about flowers, and Joey has become a little Scorsese in making movies.
The summer has had a few down moments; the new contract at work included a pay cut and a HUGE increase in medical expenses – not what you need when you have a few appointments a month and twice-weekly blood draws. BGSU also fell through this semester, with not enough courses to go around to adjuncts, so that took a bite out of the budget, too. Add to that a couple photo jobs I was finally ready to shoot that fell through… and things could be better. But I’m not nearly as worried about that as I probably should be, and not as worried as I would have been a year ago, or certainly as worried as I would have been three years ago. But by the same token, if a different district comes a-knockin’ over the next year or so, I’ll be listening very, very, very closely. Very closely. Extremely closely.
Running has been slowly, but steadily, improving. Last night I ran/walked a 5K in under 40 minutes for the first time since surgery. I felt horrible, but IT felt great! I understand full well that I’m not going to see a seven-minute mile again, but it sure feels good to just improve a little bit at a time. My current running routine is a run .15 mile, walk .10 mile, repeat for three miles. I’ll stick with that through this week, and see how the spirit moves me next week. First two miles are pretty easy, but the third mile gets pretty rough on me. I am running in minimalist shoes, and with a dippy smile on my face every step of the way. I may have some pain when I run, but I shit you not when I say that I am happier than ever when I am out there on the pavement or trails. I hope my recovery and running, however long I am able to keep it up, serves to show the power of God, the power of love, in our lives. When I find myself really hurting, I just focus on the love of running, the love of life, and somehow, I make it through. It’s pretty awesome, it’s way more than exercise.
By far the biggest development as it relates to my recovery this summer has been an amazing place in Toledo called The Victory Center. I got clued into this place by my colleague and friend, Pam D. It’s a place for cancer patients and their families to plug into sort of the ‘third leg’ of the stool in cancer care. The medical professionals and your personal spiritual guides are two of the legs, but TVC focuses on something that comes from both of the those places; through meditations, spiritual journeying, reiki, sound therapy, reflexology, and most importantly, a sense of community with those who have been on this journey already.
What’s been really amazing about TVC to me is that it seems to be bringing together a lot of the disparate threads of my experience thus far. When everyone’s telling you the same thing – even if they’re using different words – it’s probably worth listening. The main thing comes down to this: From the beginning, from Fr. Mark, to Kate, to the nurses on the 9th floor at Cleveland Clinic, to the book “Dealing with Cancer” from Cecilia Miller, to the guided imagery guy at TVC, to the meditation counselor, almost everyone comes back to a couple of really simple things to understand, but harder to live out: Cancer is a spiritual illness as well as a physical illness, and we are our own best doctors in dealing with that aspect of it; by visualizing the amazing brightness and power of God, and channeling it to the effected parts of the body. And further, it all comes back to the very first thing Fr. Mark said to me when I was first sick in those last days of March: God is love. The opposite of love is fear. Where there is love, there cannot be fear. There cannot be DISS-ease, or as we commonly say, disease. Filling oneself with love, with that amazing light, is the surest way to help ourselves deal with cancer.
Thank you all again for your friendship and your prayers. I love you all, and your continued friendship remains the clearest evidence of God’s love for us.
Friday, July 22, 2011
Check ups.
Joe has had a few check ups since starting on the trial medicine June 15. The visits have included urine and blood tests and a visit with Nurse L, Dr. R and various medical staff. He had an EKG done at yesterdays visit.
Some issues that could be seen as side effects or just life since surgery. It has mostly been fatigue. Could be late summer nights and early and long days home with the kids. Some concern on kidney function levels but the weather could be part of it.
We took the kids with us this time. They have felt left out and wanted to see what we talk about.
Don't let this picuture fool you. They were not angels. That is all I will say.
We made a 20 minute visit to Huntington Beach. Even at the beach it was still hot.
Ellie knows more about the issue of cancer. She wanted to show her support for Joe. She used washable (thankfully) markers to design an orange ribbon.
If you want to show your support, but don't feel as cutting edge as Ellie, you can find some support items here.
Some issues that could be seen as side effects or just life since surgery. It has mostly been fatigue. Could be late summer nights and early and long days home with the kids. Some concern on kidney function levels but the weather could be part of it.
We took the kids with us this time. They have felt left out and wanted to see what we talk about.
Don't let this picuture fool you. They were not angels. That is all I will say.
We made a 20 minute visit to Huntington Beach. Even at the beach it was still hot.
Ellie knows more about the issue of cancer. She wanted to show her support for Joe. She used washable (thankfully) markers to design an orange ribbon.
If you want to show your support, but don't feel as cutting edge as Ellie, you can find some support items here.
Monday, June 20, 2011
Posted by Joe on his FB 6/17/11
The past two or three weeks have been a case study in how the mind is so often a more powerful influence on health than the body.
In my last post on Memorial Day weekend, I had just come back from the Clinic, where a CT scan had identified a couple of troublesome spots on my lungs. Well, we waited from the scans on May 26, through to the night of June 7 – Rogers’ graduation night – when I got a call at 10 p.m. from my nurse, who said I had been accepted into the trial. Acceptance meant that an independent radiologist had confirmed that the spots on my lungs were, in fact, not cancerous.
It would be almost impossible for me to summarize my feelings during that interim period where we didn’t know anything about the suspicious spots on the lungs. It wasn’t so much a feeling of fear, as it was a feeling of weight, especially as I read through some stuff the Clinic’s cancer library had about survival rates for recurrence on the lungs. In a lot of ways, I was mentally adapting to the possibility things may not get better.
But after Nurse L’s phone call, everything changed – even though nothing had really changed. After I knew I was ‘clean,’ and on the trial, I started thinking like a healthy person again. Suddenly, I realized my best days could be ahead of me, and not behind me. Nothing physically had changed, but mentally, things were better. The way I walked, the speed I walked, the way I slept all changed, even though nothing had changed. I can’t say enough how oddly the mental part of this disease operates.
So after getting the all-clear on the lungs, we had to schedule a flurry of doctor’s appointments. The first was this past Wednesday, and we arrived at the Clinic at 11:15 for blood work – I commented to Katie, “I wonder how many times I’ve been stuck with needles in the past nine weeks?” Seriously, it’s got to be in excess of 100 times in 60-odd days – maybe more. Then we had to jet over for an EKG, then down to the basement to the coolest damn place I’ve ever seen, nuclear medicine.
Let’s be honest, I’m a sucker for really official-looking notices of danger. As the tech walked me down the hallway, there were signs that looked like fallout shelter warnings, and the biohazard symbol from “28 Days Later,” and then there was a sign about some kind of field-or-another as I was on my way to be injected with Technetium-99.
IT’S A RADIOISOTOPE THAT EMITS GAMMA RAYS. That’s when I realized that I was about to become a superhero. Gamma rays? That’s Bruce Banner! Or Peter Parker! And field stuff? Oh yeah, that’s Jon Osterman, about to become Dr. Manhattan. I admitted to the tech that, frankly, I was totally stoked about being injected with this shit.
“Well, then, you’re going to LOVE this,” she laughed, as she filled out a card. My ID card – my card that notifies law enforcement that it is in fact my NUCLEAR BODY that is setting off their delicate sniffers of atomic particles. Card-carrying Atomic Man? Oh, helllllllll yes!
When I came back out to the waiting room, grinning ear to ear, Katie rolled her eyes. That did not improve when I attempted to fire particle beams from my fingertips in the hallway. Also, much to my disappointment, that did not actually work.
So, I was high on my nascent superpowers when we went to lunch on the Clinic’s rooftop terrace. Frankly, it’s a minor miracle I didn’t attempt to use my potential powers of flight (or at least, jumping real high) while we were up there.
After lunch, we went over to the Taussig Cancer Center. Everytime I am in the waiting room it gives me pause, because I’m not sure if I look as sick as most of the other people there, and I deny it – or if I am looking at the ghosts of Christmas future. It’s not exactly the line for the Millennium Force.
We met with the docs, and there was a problem – one of my blood clotting counts was too high – my blood was too thin by about 2 percentage points to get on the study. They sent me out for a re-test on the blood, and the bone scan (the raison d’etre behind my nuclear injection earlier). I fell dead asleep during the bone scan, much to the tech’s surprise – she said most people get nervous and fidgety. I suppose if I had been any more awake, I might have been, too.
After bolting over there, we dashed back to Taussig to meet with Dr. R and Nurse L again. By this point, my mind was playing games again – preparing myself to accept the fact that I’m not on the trial, and facing more uncertainty. So imagine my delight when Nurse L comes in with her hand in the universally-accepted position of high-five. My blood count had come back down. I was within the trial range by exactly three-tenths of a percentage point.
So now that it was ‘game on,’ we had paperwork to go over, forms to learn about, pills to get, etc. Seriously, we had a tote bag full of information about the drug, and samples of stuff to deal with the side effects. So right there, on the second floor of Taussig, at 5:30 p.m., I took my first dose of The Stuff. Last night, I took a second dose. In another hour, I’ll take dose number three. So far, no side effects. I am not sure if that is a testament to how my superhero body does a great job of warding off unpleasantness – or if I am on the placebo. Time will tell. I sort of wish I would feel some side effects just to know for sure… but by the same token, I’m not in the business of rooting for unusual ‘movements,’ nausea, fatigue, blisters, mouth sores, etc. So I’m just praying that whatever is happening, it’s the right thing.
I go back to Cleveland on Tuesday for a brief check-in to make sure there’s no underlying weirdness happening that I’m not sensing. But for right now, life is good. Really good. And that’s about all any of us can ask for.
The past two or three weeks have been a case study in how the mind is so often a more powerful influence on health than the body.
In my last post on Memorial Day weekend, I had just come back from the Clinic, where a CT scan had identified a couple of troublesome spots on my lungs. Well, we waited from the scans on May 26, through to the night of June 7 – Rogers’ graduation night – when I got a call at 10 p.m. from my nurse, who said I had been accepted into the trial. Acceptance meant that an independent radiologist had confirmed that the spots on my lungs were, in fact, not cancerous.
It would be almost impossible for me to summarize my feelings during that interim period where we didn’t know anything about the suspicious spots on the lungs. It wasn’t so much a feeling of fear, as it was a feeling of weight, especially as I read through some stuff the Clinic’s cancer library had about survival rates for recurrence on the lungs. In a lot of ways, I was mentally adapting to the possibility things may not get better.
But after Nurse L’s phone call, everything changed – even though nothing had really changed. After I knew I was ‘clean,’ and on the trial, I started thinking like a healthy person again. Suddenly, I realized my best days could be ahead of me, and not behind me. Nothing physically had changed, but mentally, things were better. The way I walked, the speed I walked, the way I slept all changed, even though nothing had changed. I can’t say enough how oddly the mental part of this disease operates.
So after getting the all-clear on the lungs, we had to schedule a flurry of doctor’s appointments. The first was this past Wednesday, and we arrived at the Clinic at 11:15 for blood work – I commented to Katie, “I wonder how many times I’ve been stuck with needles in the past nine weeks?” Seriously, it’s got to be in excess of 100 times in 60-odd days – maybe more. Then we had to jet over for an EKG, then down to the basement to the coolest damn place I’ve ever seen, nuclear medicine.
Let’s be honest, I’m a sucker for really official-looking notices of danger. As the tech walked me down the hallway, there were signs that looked like fallout shelter warnings, and the biohazard symbol from “28 Days Later,” and then there was a sign about some kind of field-or-another as I was on my way to be injected with Technetium-99.
IT’S A RADIOISOTOPE THAT EMITS GAMMA RAYS. That’s when I realized that I was about to become a superhero. Gamma rays? That’s Bruce Banner! Or Peter Parker! And field stuff? Oh yeah, that’s Jon Osterman, about to become Dr. Manhattan. I admitted to the tech that, frankly, I was totally stoked about being injected with this shit.
“Well, then, you’re going to LOVE this,” she laughed, as she filled out a card. My ID card – my card that notifies law enforcement that it is in fact my NUCLEAR BODY that is setting off their delicate sniffers of atomic particles. Card-carrying Atomic Man? Oh, helllllllll yes!
When I came back out to the waiting room, grinning ear to ear, Katie rolled her eyes. That did not improve when I attempted to fire particle beams from my fingertips in the hallway. Also, much to my disappointment, that did not actually work.
So, I was high on my nascent superpowers when we went to lunch on the Clinic’s rooftop terrace. Frankly, it’s a minor miracle I didn’t attempt to use my potential powers of flight (or at least, jumping real high) while we were up there.
After lunch, we went over to the Taussig Cancer Center. Everytime I am in the waiting room it gives me pause, because I’m not sure if I look as sick as most of the other people there, and I deny it – or if I am looking at the ghosts of Christmas future. It’s not exactly the line for the Millennium Force.
We met with the docs, and there was a problem – one of my blood clotting counts was too high – my blood was too thin by about 2 percentage points to get on the study. They sent me out for a re-test on the blood, and the bone scan (the raison d’etre behind my nuclear injection earlier). I fell dead asleep during the bone scan, much to the tech’s surprise – she said most people get nervous and fidgety. I suppose if I had been any more awake, I might have been, too.
After bolting over there, we dashed back to Taussig to meet with Dr. R and Nurse L again. By this point, my mind was playing games again – preparing myself to accept the fact that I’m not on the trial, and facing more uncertainty. So imagine my delight when Nurse L comes in with her hand in the universally-accepted position of high-five. My blood count had come back down. I was within the trial range by exactly three-tenths of a percentage point.
So now that it was ‘game on,’ we had paperwork to go over, forms to learn about, pills to get, etc. Seriously, we had a tote bag full of information about the drug, and samples of stuff to deal with the side effects. So right there, on the second floor of Taussig, at 5:30 p.m., I took my first dose of The Stuff. Last night, I took a second dose. In another hour, I’ll take dose number three. So far, no side effects. I am not sure if that is a testament to how my superhero body does a great job of warding off unpleasantness – or if I am on the placebo. Time will tell. I sort of wish I would feel some side effects just to know for sure… but by the same token, I’m not in the business of rooting for unusual ‘movements,’ nausea, fatigue, blisters, mouth sores, etc. So I’m just praying that whatever is happening, it’s the right thing.
I go back to Cleveland on Tuesday for a brief check-in to make sure there’s no underlying weirdness happening that I’m not sensing. But for right now, life is good. Really good. And that’s about all any of us can ask for.
Thursday, June 16, 2011
Happy Birthday to Mark!
Happy Birthday to Grandma C! She shares her birthday with her great grandson.
We were back in Cleveland Wednesday for Joe to have a few more tests and meet with Dr. R and Nurse L to actually start the drugs! We made it just in time and I dropped Joe at building R for his 11am blood draw then parked the car. I meet him in the J building and we headed to his EKG then to Neuro Med for the prep for the full body bone scan. He had radioactive iodine injected into his veins. It makes him slightly radioactive for two days. He has to flush twice after using the bathroom. He had many jokes about Dr. Manhattan and the card to he carries incase he sets off alarms radiation detectors that Homeland Security has at airports.
After the prep we had lunch on the Rooftop.
We went back to building R to meet with Dr. R and Nurse L. We were told there was a slight problem. The blood work done earlier had a result that was 2 units higher than stated in the study parameters. It was determined they were going to draw blood again in hopes of better numbers. We had a small window of time to get it done and get back to building J for the bone scan. It was close and we had less than 5 minutes to make it. We would have not been 3 minutes late if we did not have to wait for elevators. Joe had the bone scan done and even got a nap in during the process. I was very jealous because I had been trying to catch a nap all day in the different waiting areas.
Again back to building R in hopes that the blood work results were better. Nurse L gave Joe a high five and he made it by .5. After one last hurdle, 3 good pressures 2 minutes apart, Nurse L released us from the exam room for a few minutes while she worked with the pharmacy to get the drugs. She had asked them to stay longer in hopes Joe could still get the medication. Once back in the exam rooms she went over the dosage, the tracking of side effects and management of side effects. Joe took his first dose then (1 hour before eating or 2 hours after) and we were on our way much later than we planned but all worth it.
We started home and stopped to eat an hour after Joe took his pills.
No side effect issues yet. I almost hope we see something so we can maybe have some idea if we have the placebo or not.
Happy Birthday to Grandma C! She shares her birthday with her great grandson.
We were back in Cleveland Wednesday for Joe to have a few more tests and meet with Dr. R and Nurse L to actually start the drugs! We made it just in time and I dropped Joe at building R for his 11am blood draw then parked the car. I meet him in the J building and we headed to his EKG then to Neuro Med for the prep for the full body bone scan. He had radioactive iodine injected into his veins. It makes him slightly radioactive for two days. He has to flush twice after using the bathroom. He had many jokes about Dr. Manhattan and the card to he carries incase he sets off alarms radiation detectors that Homeland Security has at airports.
After the prep we had lunch on the Rooftop.
We went back to building R to meet with Dr. R and Nurse L. We were told there was a slight problem. The blood work done earlier had a result that was 2 units higher than stated in the study parameters. It was determined they were going to draw blood again in hopes of better numbers. We had a small window of time to get it done and get back to building J for the bone scan. It was close and we had less than 5 minutes to make it. We would have not been 3 minutes late if we did not have to wait for elevators. Joe had the bone scan done and even got a nap in during the process. I was very jealous because I had been trying to catch a nap all day in the different waiting areas.
Again back to building R in hopes that the blood work results were better. Nurse L gave Joe a high five and he made it by .5. After one last hurdle, 3 good pressures 2 minutes apart, Nurse L released us from the exam room for a few minutes while she worked with the pharmacy to get the drugs. She had asked them to stay longer in hopes Joe could still get the medication. Once back in the exam rooms she went over the dosage, the tracking of side effects and management of side effects. Joe took his first dose then (1 hour before eating or 2 hours after) and we were on our way much later than we planned but all worth it.
We started home and stopped to eat an hour after Joe took his pills.
No side effect issues yet. I almost hope we see something so we can maybe have some idea if we have the placebo or not.
Thursday, June 9, 2011
Tuesday, May 31, 2011
Here is the basic results from the 2 days at the Clinic last week. If you read Joe's post of the day it is hard to believe we were both experiencing the same thing because I felt much better that it appears he did about it all.
Thursday- blood drawn and CT Scan. The blood draw and CT took maybe 20 minutes total but the IV of the CT Scan contrast and the liquid Joe had to drink took 90 minutes. It was in the basement of the R building and freezing, even more for Joe with the cold contrast.
Nice evening with Joe's cousin and his wife and daughter.
Friday- The appointment was for 9. We got there in plenty of time and even called back 20 minutes early. First the nurse took some vitals. The a medical fellow came in and did a history and physical exam. Either what he did or did not say or the way he was acting but we did not have a warm feeling about it. Very medical with no personality.
Finally Nurse Laura stopped in and she was great. Joe and her spoke on a phone a few times and she was asking for updates and remember so much about the personal part of the conversation. Very warm personal conversations... just the type of person you want for this.
Finally Dr. R came in. He is a nice guy too... but Nurse Laura appeared to have all the logics questions I had. He explained Joe's scans and what it all means.
In order to be part of the study there has has to be no sign of malignancy. Joe's scans showed 3 spots on the lungs that are a concern. One of the spots was there is March and showed no size difference (20-30% of the population have spots that mean nothing), a second spot was believed to be part of the rib showing up (CT scans take an image every 5 mm so what was before and after those 5 mm look like it was part of the rib), the third spot is what is questioned. Again because of the 5mm and where it is it could still be part of the lung arteries. It was not seen in the March scans.
Joe's scan are to be looked at by an independent board of radiologist to determine his eligibility of the study.
The study is this. There is a drug pazopanib that is already FDA approved to be use with Renal Cell Carcinoma (RCC) once the cancer has shown up in other parts of the body (mostly the lungs). Now they are studying the adjunct part. That means if a patient is given pazopanib after a tumor is removed but before RCC is detected elsewhere does it keep RCC at bay more so than those not taking pazopanib? This is a double blind study- could get active drug or get placebo- no one knows. It is for the trade name Votrient from GlaxoSmithKline. The total people to take part will be 1500; at the Clinic about 30. Joe would have to have regular appointments with the doctors in either case for more scans.
The standard of care is scan to look for growth so if Joe is not able to take part in the study we just watch the spots and have scan just as often as he would if part of the study (which could be no different if he is given the placbo). If the spots of concern do show RCC growth then Joe would most likely be started on one of the 6 drugs used to treat it including pazopanib.
Nurse Laura gave us some paperwork to read and stop back and ask question and sign to give consent to share Joe's scan if we wanted to go forward. We did all that. I might suggest that reading Tina Fey's Bossypants in an oncology area waiting room may not be a good idea. Not many people look happy there...but then maybe they all need to read it. I was also laughing while in the exam rooming when waiting.
Nurse Laura also explained to look at this as a chronic decease like diabeties. She said many of the patients take 1 of the drugs for years and don't have issues. She said Joe can drop out at any time, they will work with us on managing the side effects as well.
This is going to be a whack a mole game. We just beat it back each time it pops up.
Thursday- blood drawn and CT Scan. The blood draw and CT took maybe 20 minutes total but the IV of the CT Scan contrast and the liquid Joe had to drink took 90 minutes. It was in the basement of the R building and freezing, even more for Joe with the cold contrast.
Nice evening with Joe's cousin and his wife and daughter.
Friday- The appointment was for 9. We got there in plenty of time and even called back 20 minutes early. First the nurse took some vitals. The a medical fellow came in and did a history and physical exam. Either what he did or did not say or the way he was acting but we did not have a warm feeling about it. Very medical with no personality.
Finally Nurse Laura stopped in and she was great. Joe and her spoke on a phone a few times and she was asking for updates and remember so much about the personal part of the conversation. Very warm personal conversations... just the type of person you want for this.
Finally Dr. R came in. He is a nice guy too... but Nurse Laura appeared to have all the logics questions I had. He explained Joe's scans and what it all means.
In order to be part of the study there has has to be no sign of malignancy. Joe's scans showed 3 spots on the lungs that are a concern. One of the spots was there is March and showed no size difference (20-30% of the population have spots that mean nothing), a second spot was believed to be part of the rib showing up (CT scans take an image every 5 mm so what was before and after those 5 mm look like it was part of the rib), the third spot is what is questioned. Again because of the 5mm and where it is it could still be part of the lung arteries. It was not seen in the March scans.
Joe's scan are to be looked at by an independent board of radiologist to determine his eligibility of the study.
The study is this. There is a drug pazopanib that is already FDA approved to be use with Renal Cell Carcinoma (RCC) once the cancer has shown up in other parts of the body (mostly the lungs). Now they are studying the adjunct part. That means if a patient is given pazopanib after a tumor is removed but before RCC is detected elsewhere does it keep RCC at bay more so than those not taking pazopanib? This is a double blind study- could get active drug or get placebo- no one knows. It is for the trade name Votrient from GlaxoSmithKline. The total people to take part will be 1500; at the Clinic about 30. Joe would have to have regular appointments with the doctors in either case for more scans.
The standard of care is scan to look for growth so if Joe is not able to take part in the study we just watch the spots and have scan just as often as he would if part of the study (which could be no different if he is given the placbo). If the spots of concern do show RCC growth then Joe would most likely be started on one of the 6 drugs used to treat it including pazopanib.
Nurse Laura gave us some paperwork to read and stop back and ask question and sign to give consent to share Joe's scan if we wanted to go forward. We did all that. I might suggest that reading Tina Fey's Bossypants in an oncology area waiting room may not be a good idea. Not many people look happy there...but then maybe they all need to read it. I was also laughing while in the exam rooming when waiting.
Nurse Laura also explained to look at this as a chronic decease like diabeties. She said many of the patients take 1 of the drugs for years and don't have issues. She said Joe can drop out at any time, they will work with us on managing the side effects as well.
This is going to be a whack a mole game. We just beat it back each time it pops up.
Posted by Joe on his FB 5/28/11
Well don’tcha know I’m caught in a trap.
I can’t walk out,
Because I love you too much, baby.
Elvis Presley, ‘Suspicious Minds.’
We really don’t KNOW anything. Where we are, where we’re going. We don’t KNOW anything for sure, except that there are ‘suspicions.’
After a day of tests, and a morning of appointments, we don’t KNOW one more thing than we knew going in. What we have in the place of knowledge is suspicion, assumption, and uncertainty. If you know me well enough to be reading this, you know that if there’s one thing I deal poorly with, it’s that trifecta.
Way back on March 31, at Wood County Hospital, a CT scan was done of my chest. On that scan, radiology identified an extremely small ‘nodule’ on my lung. This Thursday, I had CT scans done again in a freezing cold basement at Cleveland Clinic. The nodule was still there. It hadn’t grown in two months, which is good. But its mere presence could, maybe, possibly, in some context indicate a spread of the cancer.
Maybe.
Might.
So now, my scans go off to an independent radiologist to determine whether the nodule is, indeed, suspicious or not. Please note – he won’t be determining if it’s actually cancerous. Just suspicious, or not.
If it’s not ‘suspicious,’ I’m a great candidate for a pretty promising trial of a medicine already used for people with recurrence of kidney cell carcinoma. If it is ‘suspicious,’ I don’t qualify for the trial, but will begin the ‘standard of care’ for recurrence. Maybe. Because it might not actually be recurrence. It might just be suspicious.
Yesterday was the first day I actually considered the fact seriously that this might come back. With apologies to the Replacements, “You can call me Hymie, You can call me Sam, you can call me Stupid, ‘cause that’s prob’ly what I am.” But I had completely convinced myself that I knew what was going to happen next. Dr. K got all of the cancer. Dr. R, my new oncologist and Nurse W – both of whom serve on national kidney cancer boards, and are literally the best in the world – would get me on the trial, the trial would work, and I, Joseph Boyle, would beat the odds.
I reiterate, for my sake as much as yours, that this may still be the case. Maybe.
But it might not. And even if it is, I know a lot more about the treatments they are using with increasing success, and in some cases, have blasted the cancer into complete remission.
I’m trying as hard as I can to bottle up the mights and maybes, to just live it one day at a time, and not get worked up about anything until something is actually known, which would be June 7, at the earliest. But I just can’t explain how difficult it is to keep my mind from going to those places. I know people mean well when they say ‘cheer up,’ and ‘stay positive,’ but it is just not that simple for me – it never has been.
Many of you have been praying, along with me, for a miracle. The more I think about it, the more I think Katie hit it on the head the other day: Catching this when we did, as such a fluke, was a miracle. Ending up in Cleveland with the best surgeon in the country for the removal; and getting an oncology team that specializes in precisely my kind of cancer… well, that’s rather a miracle, too. But I can’t help but to feel a bit greedy for another one, the big one, and I’m sort of ashamed by that. I want the big miracle; I want the cure. I honestly keep waiting for that appointment when they say that they have no idea how it happened, but I’m clean.
I know that, with time, over the next few days, my blood pressure will come down and my mood will improve. And my situation is by no means dire right now. It’s my mind that’s playing games with me, and I have to rediscover the peace I had after the surgery, and then after the blood clot. First and foremost, writing this is the last I am planning on talking about any of this for at least this long weekend. Writing is my therapy, and I just kind of needed to get this on 'paper,' and out there, and out of my life for a few days.
Thank you all again for your thoughts and prayers, and I hope you’ll keep them coming. I know God’s will shall be done no matter what, but I can’t help but think I’m meant to stick around for a while
Well don’tcha know I’m caught in a trap.
I can’t walk out,
Because I love you too much, baby.
Elvis Presley, ‘Suspicious Minds.’
We really don’t KNOW anything. Where we are, where we’re going. We don’t KNOW anything for sure, except that there are ‘suspicions.’
After a day of tests, and a morning of appointments, we don’t KNOW one more thing than we knew going in. What we have in the place of knowledge is suspicion, assumption, and uncertainty. If you know me well enough to be reading this, you know that if there’s one thing I deal poorly with, it’s that trifecta.
Way back on March 31, at Wood County Hospital, a CT scan was done of my chest. On that scan, radiology identified an extremely small ‘nodule’ on my lung. This Thursday, I had CT scans done again in a freezing cold basement at Cleveland Clinic. The nodule was still there. It hadn’t grown in two months, which is good. But its mere presence could, maybe, possibly, in some context indicate a spread of the cancer.
Maybe.
Might.
So now, my scans go off to an independent radiologist to determine whether the nodule is, indeed, suspicious or not. Please note – he won’t be determining if it’s actually cancerous. Just suspicious, or not.
If it’s not ‘suspicious,’ I’m a great candidate for a pretty promising trial of a medicine already used for people with recurrence of kidney cell carcinoma. If it is ‘suspicious,’ I don’t qualify for the trial, but will begin the ‘standard of care’ for recurrence. Maybe. Because it might not actually be recurrence. It might just be suspicious.
Yesterday was the first day I actually considered the fact seriously that this might come back. With apologies to the Replacements, “You can call me Hymie, You can call me Sam, you can call me Stupid, ‘cause that’s prob’ly what I am.” But I had completely convinced myself that I knew what was going to happen next. Dr. K got all of the cancer. Dr. R, my new oncologist and Nurse W – both of whom serve on national kidney cancer boards, and are literally the best in the world – would get me on the trial, the trial would work, and I, Joseph Boyle, would beat the odds.
I reiterate, for my sake as much as yours, that this may still be the case. Maybe.
But it might not. And even if it is, I know a lot more about the treatments they are using with increasing success, and in some cases, have blasted the cancer into complete remission.
I’m trying as hard as I can to bottle up the mights and maybes, to just live it one day at a time, and not get worked up about anything until something is actually known, which would be June 7, at the earliest. But I just can’t explain how difficult it is to keep my mind from going to those places. I know people mean well when they say ‘cheer up,’ and ‘stay positive,’ but it is just not that simple for me – it never has been.
Many of you have been praying, along with me, for a miracle. The more I think about it, the more I think Katie hit it on the head the other day: Catching this when we did, as such a fluke, was a miracle. Ending up in Cleveland with the best surgeon in the country for the removal; and getting an oncology team that specializes in precisely my kind of cancer… well, that’s rather a miracle, too. But I can’t help but to feel a bit greedy for another one, the big one, and I’m sort of ashamed by that. I want the big miracle; I want the cure. I honestly keep waiting for that appointment when they say that they have no idea how it happened, but I’m clean.
I know that, with time, over the next few days, my blood pressure will come down and my mood will improve. And my situation is by no means dire right now. It’s my mind that’s playing games with me, and I have to rediscover the peace I had after the surgery, and then after the blood clot. First and foremost, writing this is the last I am planning on talking about any of this for at least this long weekend. Writing is my therapy, and I just kind of needed to get this on 'paper,' and out there, and out of my life for a few days.
Thank you all again for your thoughts and prayers, and I hope you’ll keep them coming. I know God’s will shall be done no matter what, but I can’t help but think I’m meant to stick around for a while
Sunday, May 22, 2011
Posted by Joe on his FB 5/21/11
RELAY FOR LIFE
My walking form right now is even worse than my running form ever was. I’m a little hunched in the shoulders to relieve pressure around the incision, and the further I walk, the more I bend over. Last night, as I slouched around the Bowling Green High School track during the Relay for Life, my gaze drifted down to the luminaries lining the track. I was taken aback when I saw the name on one of them – Dennis Hale, one of my favorite professors from BGSU, a guy who had a quick and easy smile, and whose care for his students shone through everything he did. A few steps later, the name of Chris Bartz, our Rogers athletic director’s wife. A few steps later, and the name Jackie Cocke, the grandmother of one of my oldest friends from back in GR. And on, and on, and on.
I was shocked at how many people I knew who had died from cancer – and as I made a second circuit of the track, I started running into a lot of people I knew. People who were wearing purple shirts. People who were survivors. It was a second shock – how many people I know who have survived cancer.
I’m not versed in the statistics, and frankly, the numbers don’t mean nearly as much as the qualitative data. We all know a LOT of people who have died from cancer, and we all know a LOT of people who have survived cancer.
UPDATES
• I went back to work for Thursday and Friday of this week. It was more than great to be back at Rogers. I missed the students and my colleagues terribly, and it was good to be doing something that felt normal. Standing in the hall and laughing with Brian, Eric, and Ron is better than percocet.
• Do not be fooled by my Nike+ updates that say I ‘ran!’ I am using my Nike+ to track my walking mileage, and trying to add a tenth of a mile to my distance each day. My pace is somewhere in the neighborhood of 27’30”. A few people have private messaged me with atta boys for getting out and running – but I’m not quite there yet!! Currently, I can walk about 6/10 of a mile before I’m gassed.
• The walking (and pain therein) is a big part of the reason for this next bit of news: This past week, I gave up my spot on the Normandy Institute this summer. The decision, once I took my heart out of the equation, and thought with my brains, was sort of a no-brainer – especially when they guaranteed that my student, Corey, would still be able to go and will be paired with a couple of great adult partners.
I really wanted to convince myself that I could do it, but reality won this round. The institute is less than four weeks away, and would require at least three miles of walking on each outing, up cliffs, across beaches in France, getting to the Metro, on the Metro, to the next place, etc. It’s a stretch for me to believe that I would be able to do that AT ALL, much less comfortably in this time frame. And then there was the complexity of the medical issues: What if I got cut? What if I took a spill? As good a reputation as the French health care system has, do I really want to risk a situation where I have to spend a week in a hospital overseas when my French is limited to finding restrooms, buying train tickets, and ordering lamb? So, in consultation with the trip’s organizer, we agreed it was a bad idea for me to take the trip this year after the blood clot complication. But should the institute’s sponsor choose to fund it again next year (which seems likely), I am guaranteed a spot. I’m at peace with the decision – I was exceptionally nervous about traveling in this condition. But I’d be lying if I said I wasn’t a little disappointed. I’ve wanted to pay my respects at Uncle Paul’s grave for so long, and this part of history is so resonant with me, that I wish badly I could go. So I’m praying for good health a year from now, and a wildly successful institute so the sponsor decides to fund it next year!!
• Between not going on the Institute trip, having to cancel our wedding shoots since I can’t even carry the freakin’ bag, and having had to resign my course at BGSU, all of a sudden my summer is a lot more free. For the first time in five years, our weekends won’t be dictated by other peoples’ weddings. We’ll be able to get up to the cottage more, over to Aaron and Kathy’s, and spend a little time in DC with Katie’s sister. I’m rather excited at the notion of being able to spend this summer almost exclusively with family and friends.
• We go to Cleveland Clinic this coming Thursday and Friday to get a battery of tests, and then meet with my oncologist. I’m hoping to get on a clinical trial for a drug that is intended to ward off recurrence. Thus far, nothing science has developed has reduced the 40-50% recurrence rate of renal cell carcinoma. I am all about whatever can improve my odds, and am praying that this might be part of my miracle.
• On praying: Since diagnosis, I have sort of formalized a prayer regimen every day for myself. But the past week, I’ve been kind of disappointed with myself, and feeling as if my faith is weak. When all of this happened, my prayer had an intensity that I’ve never felt before. Now, as life gets more ‘normal,’ I feel that my prayer is again becoming somewhat rote, and lacking the urgency it had when I was in crisis. It’s shameful, and I suspect, not unique to me, that faith and our relationship with God becomes so much more tangible at our darkest hours.
RELAY FOR LIFE
My walking form right now is even worse than my running form ever was. I’m a little hunched in the shoulders to relieve pressure around the incision, and the further I walk, the more I bend over. Last night, as I slouched around the Bowling Green High School track during the Relay for Life, my gaze drifted down to the luminaries lining the track. I was taken aback when I saw the name on one of them – Dennis Hale, one of my favorite professors from BGSU, a guy who had a quick and easy smile, and whose care for his students shone through everything he did. A few steps later, the name of Chris Bartz, our Rogers athletic director’s wife. A few steps later, and the name Jackie Cocke, the grandmother of one of my oldest friends from back in GR. And on, and on, and on.
I was shocked at how many people I knew who had died from cancer – and as I made a second circuit of the track, I started running into a lot of people I knew. People who were wearing purple shirts. People who were survivors. It was a second shock – how many people I know who have survived cancer.
I’m not versed in the statistics, and frankly, the numbers don’t mean nearly as much as the qualitative data. We all know a LOT of people who have died from cancer, and we all know a LOT of people who have survived cancer.
UPDATES
• I went back to work for Thursday and Friday of this week. It was more than great to be back at Rogers. I missed the students and my colleagues terribly, and it was good to be doing something that felt normal. Standing in the hall and laughing with Brian, Eric, and Ron is better than percocet.
• Do not be fooled by my Nike+ updates that say I ‘ran!’ I am using my Nike+ to track my walking mileage, and trying to add a tenth of a mile to my distance each day. My pace is somewhere in the neighborhood of 27’30”. A few people have private messaged me with atta boys for getting out and running – but I’m not quite there yet!! Currently, I can walk about 6/10 of a mile before I’m gassed.
• The walking (and pain therein) is a big part of the reason for this next bit of news: This past week, I gave up my spot on the Normandy Institute this summer. The decision, once I took my heart out of the equation, and thought with my brains, was sort of a no-brainer – especially when they guaranteed that my student, Corey, would still be able to go and will be paired with a couple of great adult partners.
I really wanted to convince myself that I could do it, but reality won this round. The institute is less than four weeks away, and would require at least three miles of walking on each outing, up cliffs, across beaches in France, getting to the Metro, on the Metro, to the next place, etc. It’s a stretch for me to believe that I would be able to do that AT ALL, much less comfortably in this time frame. And then there was the complexity of the medical issues: What if I got cut? What if I took a spill? As good a reputation as the French health care system has, do I really want to risk a situation where I have to spend a week in a hospital overseas when my French is limited to finding restrooms, buying train tickets, and ordering lamb? So, in consultation with the trip’s organizer, we agreed it was a bad idea for me to take the trip this year after the blood clot complication. But should the institute’s sponsor choose to fund it again next year (which seems likely), I am guaranteed a spot. I’m at peace with the decision – I was exceptionally nervous about traveling in this condition. But I’d be lying if I said I wasn’t a little disappointed. I’ve wanted to pay my respects at Uncle Paul’s grave for so long, and this part of history is so resonant with me, that I wish badly I could go. So I’m praying for good health a year from now, and a wildly successful institute so the sponsor decides to fund it next year!!
• Between not going on the Institute trip, having to cancel our wedding shoots since I can’t even carry the freakin’ bag, and having had to resign my course at BGSU, all of a sudden my summer is a lot more free. For the first time in five years, our weekends won’t be dictated by other peoples’ weddings. We’ll be able to get up to the cottage more, over to Aaron and Kathy’s, and spend a little time in DC with Katie’s sister. I’m rather excited at the notion of being able to spend this summer almost exclusively with family and friends.
• We go to Cleveland Clinic this coming Thursday and Friday to get a battery of tests, and then meet with my oncologist. I’m hoping to get on a clinical trial for a drug that is intended to ward off recurrence. Thus far, nothing science has developed has reduced the 40-50% recurrence rate of renal cell carcinoma. I am all about whatever can improve my odds, and am praying that this might be part of my miracle.
• On praying: Since diagnosis, I have sort of formalized a prayer regimen every day for myself. But the past week, I’ve been kind of disappointed with myself, and feeling as if my faith is weak. When all of this happened, my prayer had an intensity that I’ve never felt before. Now, as life gets more ‘normal,’ I feel that my prayer is again becoming somewhat rote, and lacking the urgency it had when I was in crisis. It’s shameful, and I suspect, not unique to me, that faith and our relationship with God becomes so much more tangible at our darkest hours.
Thursday, May 19, 2011
It should come as no surprise I’m not the writer Joe is. I use him as my copy editor on the important things.
Joe’s pain is much better. He has increased his walking to a mile a day. No cane or walker. He can start driving when the Percocet is no longer taken.
He is up and down the basement steps a few times a day (we have a one story house). He has done dishes a few times, made his own lunch, helped with dinner and folded laundry. Just about to the point where he can help with more housework but also well enough to go back to work. That said…
Joe went back to school today (but I expect him to be very tired when he gets home) I’m sure he will write more about it. This morning was the senior class awards ceremony in which the Boyle family scholarship was awarded. Last year when Joe won BCSN Teacher of the Year it came with a $10000 endowed scholarship in his name.
The blood work is still not coming back with a constant level. Joe takes the Coumadin each day and the dosage changes depending on the most recent INR. I had to remind him once to not eat salad (greens can effect IRN levels). The transition from Coumadin control done by the Cleveland Clinic has been transferred to his local doctor. During this whole blood clot issue Joe's general practitioner left the practice he was at so it took a little longer to get local care set up. We are happy with his new internist.
The Coumadin thins the blood- which we want so blood can still move while the body works on dissolving the clot-but it means he has a chance of bleeding. Because of that he can’t use a strait razor. I can’t wait for his electric razor to arrive from Amazon so he can shave and be done with facial hair.
We have settled into the new “normal”.
Joe’s pain is much better. He has increased his walking to a mile a day. No cane or walker. He can start driving when the Percocet is no longer taken.
He is up and down the basement steps a few times a day (we have a one story house). He has done dishes a few times, made his own lunch, helped with dinner and folded laundry. Just about to the point where he can help with more housework but also well enough to go back to work. That said…
Joe went back to school today (but I expect him to be very tired when he gets home) I’m sure he will write more about it. This morning was the senior class awards ceremony in which the Boyle family scholarship was awarded. Last year when Joe won BCSN Teacher of the Year it came with a $10000 endowed scholarship in his name.
The blood work is still not coming back with a constant level. Joe takes the Coumadin each day and the dosage changes depending on the most recent INR. I had to remind him once to not eat salad (greens can effect IRN levels). The transition from Coumadin control done by the Cleveland Clinic has been transferred to his local doctor. During this whole blood clot issue Joe's general practitioner left the practice he was at so it took a little longer to get local care set up. We are happy with his new internist.
The Coumadin thins the blood- which we want so blood can still move while the body works on dissolving the clot-but it means he has a chance of bleeding. Because of that he can’t use a strait razor. I can’t wait for his electric razor to arrive from Amazon so he can shave and be done with facial hair.
We have settled into the new “normal”.
Saturday, May 14, 2011
Life, moving forward
Posted by Joe on his FB 5/21/11
I feel a bit like a pretender as I write these blog posts. “Cancer survivor” is not a badge I feel that I have earned; in all honesty, despite the inconveniences and annoyances of the past six weeks, the pain I have had to bear is not that heavy compared to others. So I write this today not as someone who claims to have all the answers – hell, I don’t even think I have many of the right questions yet – but just as a person who is on a journey, and seeing some things for the first time, and remembering others that had been long forgotten or ignored.
Many of you may have seen these things already, and my observations will mean little to you. I hope you’ll think of me like someone just moving to your hometown – the things I note may be obvious to you, and they will almost certainly be naïve in some cases.
The polite thing to do here is to give you the quick and easy rundown of what’s happened, so we’ll start with that: Sunday, May 8, I was sprung from Cleveland Clinic and came home. Since then, I’ve been building strength in my left leg, and endurance to walk on it for longer. It’s been getting a lot better – they sent me home with a walker, and I’ve ditched that. Friday, I went to Kroger with my mom and was able to walk (albeit very slowly) from the car, to the bakery, and back out to the car. It may not sound like much, but it was pretty sweet for me. I also have a new primary care doctor, whom I like personally, and trust professionally. It looks like I’ll be trapped in these compression stockings through June, but then will be able to be barelegged and barefoot, as I prefer to be, throughout the rest of the summer. More on that barefoot business later. I will be on blood thinners – rat poison – for about a year, during which I will have to be exceptionally careful to not to get cut or bruised. Specifically, I am forbidden from being on ladders or roofs. I can't imagine either of these shall be a problem.
Medically, my known future includes weekly blood draws, a return to the Clinic in late May to meet with the oncologist to begin a clinical trial on anti-recurrence drugs, and an August appointment with the vascular people.
That’s the boring stuff. What I’m excited about is that life itself seems to be slowly getting off ‘pause,’ and back in a new kind of action. Next week, I’ll begin my return to work on Thursday and Friday. I just can’t overstate how excited I am about that – not only do I miss the kids and my friends terribly, I miss the routine and the excitement of not knowing what every day is going to bring. I’m sad that I’ll only get a couple of weeks of school before coming home for summer. My summer plans are sort of in flux right now, and I’ll explain more about that in later posts.
If you were looking for a brief update on my condition, that was it! You don’t have to read anymore! If you’re into reading some stuff that’s spiritual on the border of hippy-dippy, feel free to read on.
###
Still with me? Cool – but don’t feel you have to be.
Less than an hour after doctors used the “C” word to describe what was in my body on March 31, Fr. Mark was at my bedside and encouraged me to dig deeper – that cancer, physical cancer, sort of is what it is. But what’s important is to tackle the spiritual cancer. Even at that point, Father identified exactly what my spiritual cancer was, and has always been: Fear.
So, from the day of diagnosis, I’ve been grappling on and off – and sort of grasping in the dark for answers – with fear and its consequences. This past week, I read two books that helped me further understand both my specific fears, and fear’s opposite, love.
I’ll start with the second book, “Dealing with Cancer.” My friend Colin’s mom sent me this book just a day or so after I got back from the Clinic. At first blush, it’s something that would probably not be my cup of tea. The author, Myron Eshowsky, is a modern-day shaman – which, in my mind, conjured up some kind of crazy-ass dude in a loincloth jumping around a fire yelling ‘Oonga Boonga!” To be fair, there is a little of that in here. But it’s much deeper.
Eshowsky’s central premise is that we’ve got it wrong in the Western world when we say we’re ‘battling cancer,’ or ‘going to war with cancer,’ or even when we say we are ‘beating cancer.’ Eshowsky takes the position that this visualization is completely wrong.
Cancer is part of all of us; you, me, anyone. All of us have cancer cells in our body. But only some of us have the cancer cells actually take root, replicate, and raise a ruckus in our bodies. So declaring war on cancer is sort of… declaring war on yourself. Eshowsky encourages the reader to confront the cancer; to understand what the conditions were that allowed the cancer to decide to put its roots down, and to sort of negotiate a truce with the cancer, rather than defeat it on the field of battle.
For me, as a guy who counts Churchill, Teddy Roosevelt, and Dwight Eisenhower as idols, this idea of peace-making with a deadly enemy is almost anathema – especially since our doctors, our society, and our friends all use the same verbiage: “You’re gonna beat this thing!” “You’re gonna win this fight!” “You’ll win this battle!”
So as I’m reading the book, and it starts making sense to me, I’m having to reprogram my brain – having to reframe my concept of my recovery. So, the history junkie in me starts realizing that what Eshowsky is saying is kind of like the difference between the Treaty of Versailles and the Marshall Plan. After World War I, we enforced a brutal peace, and felt like we won for a little while. But we never addressed the underlying problems – and it led to an inevitable resurgence of conflict that caught us off guard, and was even more deadly than the first fight. We learned that lesson after World War II, and the Marshall Plan approached the end of the war far differently. In the simplest terms, the Marshall Plan built peace through partnership.
With that vision in my head, it was easier to take deeper steps into Eshowsky’s method. And this is probably where all of this gets a little weird for most of you, and I’ll not even share the weirdest parts.
Eshowsky encourages people to take a ‘shaministic journey’ to sort of ‘meet’ their cancer and learn what it is, and where it comes from. He encourages the journeyer to envision themselves descending below ground, and meeting a ‘spirit animal,’ and then traveling to find and meet one’s cancer and find out why it is working against us.
I know what you’re thinking, and it’s probably not very far from what I was thinking. So last night, after saying my rosary, I’m sitting on the couch, and attempting to drift toward sleep, and I start going through his method to enter a trance. Well, what happened was I fell asleep. And then had a dream that, in large part, was exactly what he described as what happens in the trances.
In my dream, I met my dog Emerald, and she was with me at the grocery. There, we ran into a girl I had a crush on a long, long time ago. She was at least six and a half feet tall in the dream (larger than life, tellingly). I tried to say hey, and she sort of smiled, and walked away. Rejection at my most vulnerable time. Left alone. Scared.
Scared. Fear. Fear of being alone. Fear of being rejected. Later, when I woke up with a start, everything started clicking for me. For the first time, I was realizing what my really, really deep fears entail: Being rejected for who I really am. Being rejected by her so long ago was a scar I didn’t even realize I had – something I had kept down for a really long time. Obviously, it worked out for the absolute best over time! But it was a wound I had never even thought of, and hadn’t considered how deeply it wounded me at the time, and how it changed the way I approached life ever after that.
The dream went on, and if possible, got weirder. My youngest son and I were on a four-wheeler, and being chased by jaguars. I drove faster and faster, but the jaguars kept pace with us. I had to slow down to take a turn, and a jaguar cub caught up with us and jumped on the back. I told the jaguar to calm down, that we weren’t the enemy! That we didn’t want to hurt him, and the jaguar calmed down and said he didn’t want to hurt us, either. Somehow, we ended up driving off with the jaguar into a field being plowed. When I woke up, I had this really peaceful sense – that the jaguar was the cancer – that it didn’t want to hurt me, but that these wounded and fearful parts of my soul were scary to it, and it fought back.
At 2 a.m., it all seemed pretty profound, and I wrote it all down so I’d remember it in the morning. I know it all seems fruity as hell, and I’d be the first to make fun of me had the experience not been so powerful in the middle of last night. Addressing this fear, these fears I didn’t know consciously that I had; addressing wounds I had hidden for years under a protective layer of good humor and stiff upper lip… it feels something like progress on the spiritual side.
###
OK, if you made it through that, congratulations. If you’re still with me, this will be the easy part. Promise.
The other life-changing book I read this week was Chris McDougall’s “Born to Run.” Coming back to the spiritual side, Father had asked me a few times throughout all of this – didn’t you notice the past few years how ‘busy’ you were? Working the school day – teaching the BGSU class – participating in youth group – getting ready for the France trip – doing the Tunisia trip – thinking about going back for the Ed.D. or Ph. D. – kids involved in everything – and running, running, and running. One night on the phone when I was in Cleveland, after Doctor Number One had said I likely wouldn’t be able to run the way I used to anymore, I told him flat out that running filled the hole left by drinking. Tearily, I told him, running’s the only thing I do for ME. It’s the only FUN I allow myself to have anymore. It was in that phone call that I realized running was the only thing from which I really derived a personal, internal joy anymore.
When I got home, I had a stack of books to read through. One was “Born to Run.” My friend Cheryl had seen it at Target, and picked it up for me before the whole blood clot thing. Soon after, my friend (and running buddy) Elizabeth told me I absolutely HAD to read this book. But it wasn’t until I was on the couch with a swollen leg that I actually had the time to do it.
I’m not going to even attempt to describe this book in any words other than life changing. Reading about these other runners – and WHY they ran, and how the single most important factor in their distance careers was the LOVE they had for community, and JOY they got from being part of the race… it just rang incredibly true to me.
I guess you could say it gave me something new to shoot for when I’m done. I’ll probably never run a 50 or 100 mile ultra like the people in the book – being down to one kidney does present a few physical limitations – but I now have a goal I never would have imagined before. When I crossed the finish line of my first half-marathon – the race that started the series of events that led to my cancer diagnosis – just about the first words out of my mouth once I could talk, were “I know I’m never gonna run a full marathon now!” But that is now my goal – I’m not just going to run again, I WILL run a marathon in the next two years. I don’t care about my time, I don’t care about any of that, I just want the joy of running with my friends.
Central to the book is the idea of ‘running naked,’ that our bodies were designed to run, and it may in fact be the evolutionary trait that allowed us to survive. It takes it further by saying that running barefoot, in the most minimalist sense possible, frees us to run healthier and further. Unencumbering ourselves, making ourselves freer, gives us joy. And joy helps us run.
I think that message brings it all together with the shamanistic voodoo, and everything else. This process is all about finding the things within me that need to be resolved, that need to be let go, and living life more simply from here on out. Money problems? They’re gonna come and go. Old hurts? They are real, they were bad, and now they can go away. Rich greedheads ruining our country? Nothing I can do about it. Union versus management bullshit at work? It just doesn’t matter, not one damn bit. All of these things that I have literally spent nights awake worrying about… not only don’t they matter. They were quite literally killing me.
Listening – REALLY listening to my kids? Loving every single minute with my wife? Laughing with friends? Spending every minute I can doing what I do best, teaching in a classroom? Feeling grass between my toes? And running through my town, not with a grimace of pain, not to beat a clock, but with a stupid smile on my face just because I can do it?
That’s what I was born to do. That’s what I’m living for.
I feel a bit like a pretender as I write these blog posts. “Cancer survivor” is not a badge I feel that I have earned; in all honesty, despite the inconveniences and annoyances of the past six weeks, the pain I have had to bear is not that heavy compared to others. So I write this today not as someone who claims to have all the answers – hell, I don’t even think I have many of the right questions yet – but just as a person who is on a journey, and seeing some things for the first time, and remembering others that had been long forgotten or ignored.
Many of you may have seen these things already, and my observations will mean little to you. I hope you’ll think of me like someone just moving to your hometown – the things I note may be obvious to you, and they will almost certainly be naïve in some cases.
The polite thing to do here is to give you the quick and easy rundown of what’s happened, so we’ll start with that: Sunday, May 8, I was sprung from Cleveland Clinic and came home. Since then, I’ve been building strength in my left leg, and endurance to walk on it for longer. It’s been getting a lot better – they sent me home with a walker, and I’ve ditched that. Friday, I went to Kroger with my mom and was able to walk (albeit very slowly) from the car, to the bakery, and back out to the car. It may not sound like much, but it was pretty sweet for me. I also have a new primary care doctor, whom I like personally, and trust professionally. It looks like I’ll be trapped in these compression stockings through June, but then will be able to be barelegged and barefoot, as I prefer to be, throughout the rest of the summer. More on that barefoot business later. I will be on blood thinners – rat poison – for about a year, during which I will have to be exceptionally careful to not to get cut or bruised. Specifically, I am forbidden from being on ladders or roofs. I can't imagine either of these shall be a problem.
Medically, my known future includes weekly blood draws, a return to the Clinic in late May to meet with the oncologist to begin a clinical trial on anti-recurrence drugs, and an August appointment with the vascular people.
That’s the boring stuff. What I’m excited about is that life itself seems to be slowly getting off ‘pause,’ and back in a new kind of action. Next week, I’ll begin my return to work on Thursday and Friday. I just can’t overstate how excited I am about that – not only do I miss the kids and my friends terribly, I miss the routine and the excitement of not knowing what every day is going to bring. I’m sad that I’ll only get a couple of weeks of school before coming home for summer. My summer plans are sort of in flux right now, and I’ll explain more about that in later posts.
If you were looking for a brief update on my condition, that was it! You don’t have to read anymore! If you’re into reading some stuff that’s spiritual on the border of hippy-dippy, feel free to read on.
###
Still with me? Cool – but don’t feel you have to be.
Less than an hour after doctors used the “C” word to describe what was in my body on March 31, Fr. Mark was at my bedside and encouraged me to dig deeper – that cancer, physical cancer, sort of is what it is. But what’s important is to tackle the spiritual cancer. Even at that point, Father identified exactly what my spiritual cancer was, and has always been: Fear.
So, from the day of diagnosis, I’ve been grappling on and off – and sort of grasping in the dark for answers – with fear and its consequences. This past week, I read two books that helped me further understand both my specific fears, and fear’s opposite, love.
I’ll start with the second book, “Dealing with Cancer.” My friend Colin’s mom sent me this book just a day or so after I got back from the Clinic. At first blush, it’s something that would probably not be my cup of tea. The author, Myron Eshowsky, is a modern-day shaman – which, in my mind, conjured up some kind of crazy-ass dude in a loincloth jumping around a fire yelling ‘Oonga Boonga!” To be fair, there is a little of that in here. But it’s much deeper.
Eshowsky’s central premise is that we’ve got it wrong in the Western world when we say we’re ‘battling cancer,’ or ‘going to war with cancer,’ or even when we say we are ‘beating cancer.’ Eshowsky takes the position that this visualization is completely wrong.
Cancer is part of all of us; you, me, anyone. All of us have cancer cells in our body. But only some of us have the cancer cells actually take root, replicate, and raise a ruckus in our bodies. So declaring war on cancer is sort of… declaring war on yourself. Eshowsky encourages the reader to confront the cancer; to understand what the conditions were that allowed the cancer to decide to put its roots down, and to sort of negotiate a truce with the cancer, rather than defeat it on the field of battle.
For me, as a guy who counts Churchill, Teddy Roosevelt, and Dwight Eisenhower as idols, this idea of peace-making with a deadly enemy is almost anathema – especially since our doctors, our society, and our friends all use the same verbiage: “You’re gonna beat this thing!” “You’re gonna win this fight!” “You’ll win this battle!”
So as I’m reading the book, and it starts making sense to me, I’m having to reprogram my brain – having to reframe my concept of my recovery. So, the history junkie in me starts realizing that what Eshowsky is saying is kind of like the difference between the Treaty of Versailles and the Marshall Plan. After World War I, we enforced a brutal peace, and felt like we won for a little while. But we never addressed the underlying problems – and it led to an inevitable resurgence of conflict that caught us off guard, and was even more deadly than the first fight. We learned that lesson after World War II, and the Marshall Plan approached the end of the war far differently. In the simplest terms, the Marshall Plan built peace through partnership.
With that vision in my head, it was easier to take deeper steps into Eshowsky’s method. And this is probably where all of this gets a little weird for most of you, and I’ll not even share the weirdest parts.
Eshowsky encourages people to take a ‘shaministic journey’ to sort of ‘meet’ their cancer and learn what it is, and where it comes from. He encourages the journeyer to envision themselves descending below ground, and meeting a ‘spirit animal,’ and then traveling to find and meet one’s cancer and find out why it is working against us.
I know what you’re thinking, and it’s probably not very far from what I was thinking. So last night, after saying my rosary, I’m sitting on the couch, and attempting to drift toward sleep, and I start going through his method to enter a trance. Well, what happened was I fell asleep. And then had a dream that, in large part, was exactly what he described as what happens in the trances.
In my dream, I met my dog Emerald, and she was with me at the grocery. There, we ran into a girl I had a crush on a long, long time ago. She was at least six and a half feet tall in the dream (larger than life, tellingly). I tried to say hey, and she sort of smiled, and walked away. Rejection at my most vulnerable time. Left alone. Scared.
Scared. Fear. Fear of being alone. Fear of being rejected. Later, when I woke up with a start, everything started clicking for me. For the first time, I was realizing what my really, really deep fears entail: Being rejected for who I really am. Being rejected by her so long ago was a scar I didn’t even realize I had – something I had kept down for a really long time. Obviously, it worked out for the absolute best over time! But it was a wound I had never even thought of, and hadn’t considered how deeply it wounded me at the time, and how it changed the way I approached life ever after that.
The dream went on, and if possible, got weirder. My youngest son and I were on a four-wheeler, and being chased by jaguars. I drove faster and faster, but the jaguars kept pace with us. I had to slow down to take a turn, and a jaguar cub caught up with us and jumped on the back. I told the jaguar to calm down, that we weren’t the enemy! That we didn’t want to hurt him, and the jaguar calmed down and said he didn’t want to hurt us, either. Somehow, we ended up driving off with the jaguar into a field being plowed. When I woke up, I had this really peaceful sense – that the jaguar was the cancer – that it didn’t want to hurt me, but that these wounded and fearful parts of my soul were scary to it, and it fought back.
At 2 a.m., it all seemed pretty profound, and I wrote it all down so I’d remember it in the morning. I know it all seems fruity as hell, and I’d be the first to make fun of me had the experience not been so powerful in the middle of last night. Addressing this fear, these fears I didn’t know consciously that I had; addressing wounds I had hidden for years under a protective layer of good humor and stiff upper lip… it feels something like progress on the spiritual side.
###
OK, if you made it through that, congratulations. If you’re still with me, this will be the easy part. Promise.
The other life-changing book I read this week was Chris McDougall’s “Born to Run.” Coming back to the spiritual side, Father had asked me a few times throughout all of this – didn’t you notice the past few years how ‘busy’ you were? Working the school day – teaching the BGSU class – participating in youth group – getting ready for the France trip – doing the Tunisia trip – thinking about going back for the Ed.D. or Ph. D. – kids involved in everything – and running, running, and running. One night on the phone when I was in Cleveland, after Doctor Number One had said I likely wouldn’t be able to run the way I used to anymore, I told him flat out that running filled the hole left by drinking. Tearily, I told him, running’s the only thing I do for ME. It’s the only FUN I allow myself to have anymore. It was in that phone call that I realized running was the only thing from which I really derived a personal, internal joy anymore.
When I got home, I had a stack of books to read through. One was “Born to Run.” My friend Cheryl had seen it at Target, and picked it up for me before the whole blood clot thing. Soon after, my friend (and running buddy) Elizabeth told me I absolutely HAD to read this book. But it wasn’t until I was on the couch with a swollen leg that I actually had the time to do it.
I’m not going to even attempt to describe this book in any words other than life changing. Reading about these other runners – and WHY they ran, and how the single most important factor in their distance careers was the LOVE they had for community, and JOY they got from being part of the race… it just rang incredibly true to me.
I guess you could say it gave me something new to shoot for when I’m done. I’ll probably never run a 50 or 100 mile ultra like the people in the book – being down to one kidney does present a few physical limitations – but I now have a goal I never would have imagined before. When I crossed the finish line of my first half-marathon – the race that started the series of events that led to my cancer diagnosis – just about the first words out of my mouth once I could talk, were “I know I’m never gonna run a full marathon now!” But that is now my goal – I’m not just going to run again, I WILL run a marathon in the next two years. I don’t care about my time, I don’t care about any of that, I just want the joy of running with my friends.
Central to the book is the idea of ‘running naked,’ that our bodies were designed to run, and it may in fact be the evolutionary trait that allowed us to survive. It takes it further by saying that running barefoot, in the most minimalist sense possible, frees us to run healthier and further. Unencumbering ourselves, making ourselves freer, gives us joy. And joy helps us run.
I think that message brings it all together with the shamanistic voodoo, and everything else. This process is all about finding the things within me that need to be resolved, that need to be let go, and living life more simply from here on out. Money problems? They’re gonna come and go. Old hurts? They are real, they were bad, and now they can go away. Rich greedheads ruining our country? Nothing I can do about it. Union versus management bullshit at work? It just doesn’t matter, not one damn bit. All of these things that I have literally spent nights awake worrying about… not only don’t they matter. They were quite literally killing me.
Listening – REALLY listening to my kids? Loving every single minute with my wife? Laughing with friends? Spending every minute I can doing what I do best, teaching in a classroom? Feeling grass between my toes? And running through my town, not with a grimace of pain, not to beat a clock, but with a stupid smile on my face just because I can do it?
That’s what I was born to do. That’s what I’m living for.
Tuesday, May 3, 2011
An update, live from Cleveland
Lord, take me where You want me to go;
Let me meet who You want me to meet;
Tell me what You want me to say,
and keep me out of Your way.
- Fr Mychal Judge
Throughout the events of the past five weeks, I have struggled mightily to stay positive, to trust in God's plan, and to sincerely believe that at some point, my life would return to something that would be different, but something I would recognize as "normal."
Yesterday was the first time I doubted all of those things, and just got angry. Here's the backstory:
Last Wednesday was just about the best day I have had since The Diagnosis back in March. I went to Youth Group at church, and it was great to be back with my friends and the students for the night. I had a dynamite talk with Deacon Joe Malenfant from Maumee about faith, healing, and recovery. I felt like I was really turning a corner, both psychologically and physically. Thursday, I was still full of it. I made a big pot of white chicken chili, frosted and decorated a birthday cake for Jophus that night, and spent two hours painstakingly lettering a prayer flag that mom's cousin Janet got for me. I was really wiped out at then end of the night, and noticed what felt li ke a muscle pull, and a bunch of pressure in what my sophomore history teacher artfully called the "doobie and clackers." I figured I pulled a muscle with all of the stuff I had done that day, and the awkward manner in which I had to do it because of the large belly incision. Friday morning, the pain was a little worse, and I decided to sit all day with the leg up, and iced, to bring down what I assumed was inflammation.
By Saturday morning, the pain had spread a little further north toward the belly, and in the afternoon, my intuition and that of a lot of my friends and family was that I had blown a hernia. So I sat around feeling sorry for myself that I'd have to have outpatient hernia surgery. But that day was J2's birthday party, and the next day was E's first communion. So I resolved to gut out the pain until I could get into my family doctor on Monday, and not miss these family events. I made it through J2's party, but by 10 pm the pain was getting more intense in my leg, and it hurt to stand on it. I fell asleep for y about two hours, and then at 0130, I woke up Katie with my moaning, and we took the sheets of the bed. My left leg was about half again as large as my right leg, and a sickening shade of purple.
For the first time in this whole journey, going back to the initial diagnosis of cancer on March 31, I had a real fear of imminent death. Katie called my dad to come over to stay with the kids, but as I tried to stand up - and couldnt bear weight on my left leg, I panicked more and more. I told her we needed to leave immediately or get an ambulance. She called our neighbor (and saint!) Bob, who came and sat with the kids while she drove me to the Wood County ER. Now, weird side note. We live exactly one mile from Four Corners, but we could hear bar noise all the way in our neighborhood. It was eerie, almost the sound of riot.
When we got to the ER, it looked like a riot must have happened downtown. A couple frat boys were in the waiting room swearing worse than anything I ever heard from sailors. A bunch of party girls were there because of a friend with alcohol poisoning or some such. The intake nurse, I think, had pity on us and moved me up in the queue. They quickly got me back to the exam rooms, and shot me up with morphine. The nurse said I was one of only two people "legitimately ill," and not suffering from "brown bottle syndrome." The ER doc said it was almost certain I had a blood clot in the leg, and called the Clinic for guidance. They were back and a forth with the Clinic from 0230 through 0500. The Clinic said they wanted me back there instead of at WCH, and arranged ambulance transfer for me. My dad came over, and rode in the ambulance with me. It was truly miserable- I had my last pain mess at 0610, and we hit the road at 0645. The driving rain made the trip slower, and I essentially went three bumpy hours strapped to a stretcher and off meds. I've never been so glad to get in a hospital as I was when we pulled in the port at the Clinics ER.
I wasn't in my room for too long before they sent me down for an ultrasound, which was incredibly painful as they jammed the sensor deep in the swollen flesh of my leg to get an accurate picture. What they found surprised them, and doubly surprised me; a clot extending from my pelvis down to mid calf. Absolutely enormous, as these things go. I met with my original surgeon, Dr K, and he told me the course of action - injected blood thinner, and then transitioning to coumarin. He was very optimistic, as always, and made me feel pretty good. As the pain management grew better, I felt pretty damn good as the day moved on, other than the leg. Then the vascular guys came in.
These two dudes just freaked me out. They said that the clot is so big, and my surgery so recent, that they can't eliminate it in the manner they would with a normal person. Therefore, the best we can hope for is to reduce it, and deal with the effects of having reduced capacity in that leg for the rest of my life. This will include wearing support socks virtually 24/7, and the end of running hard or over long distance, unless I am lucky enough to have the clot dissipate naturally.
Like I said earlier, I'm trying to accept that whatever happens is Gods will, and I'm trying to look at the bright side, and I'm trying to find grace, but to be honest, this really pissed me off and continues to make me sad, fearful, and angry. Running replaced a lot of unhealthy things in my life, and has become part of my self-identity for the past year, and to have it diminished at the least, and gone at the worst just makes me terribly angry, especially after the cancer problems. I feel like I can handle one major crisis, and recalibrate my diet, my lifestyle, and my expectations around it. But to get hit with a second major thing in four weeks just enrages me, especially when it can potentially take away one of the few physical pleasures I have allowed my self since quitting smoking, quitting drinking, changing my diet, and trying to grow in faith over the past ten years. I just wonder, what else? What more does God expect me to handle?
I'm still praying for a miracle, and I'm working my ass off here to do the things they tell me to do - they told me to get out of bed five times today, and I turned every out of bed into a fairly long and painful walk around the ward to get those veins moving and healthy. I'm counting again on the intercession of Blessed John Paul II - My cancer diagnosis came near the anniversary of his death, and this diagnosis came the very day of his beatification. I just know that his intercession is key to my recovery. Still. I guess as an asthmatic with bad knees who worked up to half marathons, I've beaten physical limitations before, I just hope I can again.
It's not all doom and gloom here. I'm back on the same floor of the hospital, and I love the staff here. Most of them remembered me, and they're just some of the coolest people I have ever met. They are everything you expect not just of medical professionals, but as children of God. I am constantly amazed by them. The food is also pretty damn good, as far as hospital food goes. Katie has kept me flush with contraband Vernors, and cookies and cream bars. My room has STO this time, so I can watch the Tribe games. On Sunday, the whole floor was cheering when the Indians pulled out the walk off win against the Tigers. And later that night, there was muted clapping up and down the hall at midnight when the president announced bin Laden's demise. So there's kind of a sense of community here, which is nice if I have to be stuck here until next week. I also got a roommate today, a younger guy who sounds like he got kidneyjacked, too. He seems like an ok guy.
My love goes out to all of you,and I thank you again for your renewed prayers.
Lord, take me where You want me to go;
Let me meet who You want me to meet;
Tell me what You want me to say,
and keep me out of Your way.
- Fr Mychal Judge
Throughout the events of the past five weeks, I have struggled mightily to stay positive, to trust in God's plan, and to sincerely believe that at some point, my life would return to something that would be different, but something I would recognize as "normal."
Yesterday was the first time I doubted all of those things, and just got angry. Here's the backstory:
Last Wednesday was just about the best day I have had since The Diagnosis back in March. I went to Youth Group at church, and it was great to be back with my friends and the students for the night. I had a dynamite talk with Deacon Joe Malenfant from Maumee about faith, healing, and recovery. I felt like I was really turning a corner, both psychologically and physically. Thursday, I was still full of it. I made a big pot of white chicken chili, frosted and decorated a birthday cake for Jophus that night, and spent two hours painstakingly lettering a prayer flag that mom's cousin Janet got for me. I was really wiped out at then end of the night, and noticed what felt li ke a muscle pull, and a bunch of pressure in what my sophomore history teacher artfully called the "doobie and clackers." I figured I pulled a muscle with all of the stuff I had done that day, and the awkward manner in which I had to do it because of the large belly incision. Friday morning, the pain was a little worse, and I decided to sit all day with the leg up, and iced, to bring down what I assumed was inflammation.
By Saturday morning, the pain had spread a little further north toward the belly, and in the afternoon, my intuition and that of a lot of my friends and family was that I had blown a hernia. So I sat around feeling sorry for myself that I'd have to have outpatient hernia surgery. But that day was J2's birthday party, and the next day was E's first communion. So I resolved to gut out the pain until I could get into my family doctor on Monday, and not miss these family events. I made it through J2's party, but by 10 pm the pain was getting more intense in my leg, and it hurt to stand on it. I fell asleep for y about two hours, and then at 0130, I woke up Katie with my moaning, and we took the sheets of the bed. My left leg was about half again as large as my right leg, and a sickening shade of purple.
For the first time in this whole journey, going back to the initial diagnosis of cancer on March 31, I had a real fear of imminent death. Katie called my dad to come over to stay with the kids, but as I tried to stand up - and couldnt bear weight on my left leg, I panicked more and more. I told her we needed to leave immediately or get an ambulance. She called our neighbor (and saint!) Bob, who came and sat with the kids while she drove me to the Wood County ER. Now, weird side note. We live exactly one mile from Four Corners, but we could hear bar noise all the way in our neighborhood. It was eerie, almost the sound of riot.
When we got to the ER, it looked like a riot must have happened downtown. A couple frat boys were in the waiting room swearing worse than anything I ever heard from sailors. A bunch of party girls were there because of a friend with alcohol poisoning or some such. The intake nurse, I think, had pity on us and moved me up in the queue. They quickly got me back to the exam rooms, and shot me up with morphine. The nurse said I was one of only two people "legitimately ill," and not suffering from "brown bottle syndrome." The ER doc said it was almost certain I had a blood clot in the leg, and called the Clinic for guidance. They were back and a forth with the Clinic from 0230 through 0500. The Clinic said they wanted me back there instead of at WCH, and arranged ambulance transfer for me. My dad came over, and rode in the ambulance with me. It was truly miserable- I had my last pain mess at 0610, and we hit the road at 0645. The driving rain made the trip slower, and I essentially went three bumpy hours strapped to a stretcher and off meds. I've never been so glad to get in a hospital as I was when we pulled in the port at the Clinics ER.
I wasn't in my room for too long before they sent me down for an ultrasound, which was incredibly painful as they jammed the sensor deep in the swollen flesh of my leg to get an accurate picture. What they found surprised them, and doubly surprised me; a clot extending from my pelvis down to mid calf. Absolutely enormous, as these things go. I met with my original surgeon, Dr K, and he told me the course of action - injected blood thinner, and then transitioning to coumarin. He was very optimistic, as always, and made me feel pretty good. As the pain management grew better, I felt pretty damn good as the day moved on, other than the leg. Then the vascular guys came in.
These two dudes just freaked me out. They said that the clot is so big, and my surgery so recent, that they can't eliminate it in the manner they would with a normal person. Therefore, the best we can hope for is to reduce it, and deal with the effects of having reduced capacity in that leg for the rest of my life. This will include wearing support socks virtually 24/7, and the end of running hard or over long distance, unless I am lucky enough to have the clot dissipate naturally.
Like I said earlier, I'm trying to accept that whatever happens is Gods will, and I'm trying to look at the bright side, and I'm trying to find grace, but to be honest, this really pissed me off and continues to make me sad, fearful, and angry. Running replaced a lot of unhealthy things in my life, and has become part of my self-identity for the past year, and to have it diminished at the least, and gone at the worst just makes me terribly angry, especially after the cancer problems. I feel like I can handle one major crisis, and recalibrate my diet, my lifestyle, and my expectations around it. But to get hit with a second major thing in four weeks just enrages me, especially when it can potentially take away one of the few physical pleasures I have allowed my self since quitting smoking, quitting drinking, changing my diet, and trying to grow in faith over the past ten years. I just wonder, what else? What more does God expect me to handle?
I'm still praying for a miracle, and I'm working my ass off here to do the things they tell me to do - they told me to get out of bed five times today, and I turned every out of bed into a fairly long and painful walk around the ward to get those veins moving and healthy. I'm counting again on the intercession of Blessed John Paul II - My cancer diagnosis came near the anniversary of his death, and this diagnosis came the very day of his beatification. I just know that his intercession is key to my recovery. Still. I guess as an asthmatic with bad knees who worked up to half marathons, I've beaten physical limitations before, I just hope I can again.
It's not all doom and gloom here. I'm back on the same floor of the hospital, and I love the staff here. Most of them remembered me, and they're just some of the coolest people I have ever met. They are everything you expect not just of medical professionals, but as children of God. I am constantly amazed by them. The food is also pretty damn good, as far as hospital food goes. Katie has kept me flush with contraband Vernors, and cookies and cream bars. My room has STO this time, so I can watch the Tribe games. On Sunday, the whole floor was cheering when the Indians pulled out the walk off win against the Tigers. And later that night, there was muted clapping up and down the hall at midnight when the president announced bin Laden's demise. So there's kind of a sense of community here, which is nice if I have to be stuck here until next week. I also got a roommate today, a younger guy who sounds like he got kidneyjacked, too. He seems like an ok guy.
My love goes out to all of you,and I thank you again for your renewed prayers.
Monday, May 2, 2011
We have had doctors in and out today. We are bummed Joe will be at Cleveland Clinic for 7 days. He was just starting to feel like himself. Clot is really clots plural up and down left leg. He is looking great in the support stockings! We hope clots resolve completely on their own and reabsorbed in body and don't become fibroids that could be live long issues. Oral Coumadin will be started later today in place of IV Heparin. He is becoming a pin cusion with all blood draws to check the therapeutic level of the blood thinners.
Joe had some groin/leg pain Thursday. He thought it was Pulled muscle or a hernia. When he woke me at 2am Sunday and I felt the left leg swelling we knew it was more. I took him to Wood Co Hospital not even waiting for the neighbor to come over to be with the kids. They treated it as an expected blood clot. The ER doctors conferred with doctors at the Cleveland Clinic and they made arrangements for transport back to Cleveland.
Just an aside- the college student stupidy in the ER that night was high. Maybe it was the week before exam or just a normal weekend but e stories we over heard about fights that involved beer bottles breakingbon heads and requiring staples to students found past out on hoods of cars was enough to make me wary of ever letting the kids out of the house after age 13.
E was making her first communion Sunday morning (we also had had Joey's 6th birthday party Satursday afternoon) and Joe did not want to mess things up for Ellie. He asked his Dad to travel wiht him back to Cleveland. I left them at 6:30, went home to sleep a little (by that point Joe's Dad had releaved our neighbor and our BIL Aaron was at the house). E&J were awake when I got home and wondered what was going on. They crawled into bed with me, Aaron took J2's bed and we tried to go back to sleep. Not sure if every one else did because when I woke 1.5 later Aaeon was entertaining all 3 kids in the living room.
We made it to church for 10 am Mass. Ellie did a great job and we are so happy she was able to take part in her special day. My Mom was a wine distributor and was able to offer Ellie the Blood of Christ for the first time just as my Grandparents had for me.
After brunch, cake and presents at the house, I took a nap and got packed for a few days in Clevland.
When I got here last night Joe was so much better! Better than I had seen him before the surgery! It maybe in part to the Indians winning record!
I stayed for a few hours the went went to the hotel. After the Bin Laden News Joe was on Facebook a lot I told him to go to bed!
When I came back this morning he was in good shape. He was bummed he was not going to be in the classroom to talk about the current events. We joked about him lecturing to the others on floor. When he moved out of bed to the chair while they remade his bed he was in a lot of pain! Once he was back in bed and had pain mess he took a nap.
Betsy and Ben are here now on their way back to Maryland.
I have written this on the iPad in fits and starts so sorry if it is disjointed.
Just an aside- the college student stupidy in the ER that night was high. Maybe it was the week before exam or just a normal weekend but e stories we over heard about fights that involved beer bottles breakingbon heads and requiring staples to students found past out on hoods of cars was enough to make me wary of ever letting the kids out of the house after age 13.
E was making her first communion Sunday morning (we also had had Joey's 6th birthday party Satursday afternoon) and Joe did not want to mess things up for Ellie. He asked his Dad to travel wiht him back to Cleveland. I left them at 6:30, went home to sleep a little (by that point Joe's Dad had releaved our neighbor and our BIL Aaron was at the house). E&J were awake when I got home and wondered what was going on. They crawled into bed with me, Aaron took J2's bed and we tried to go back to sleep. Not sure if every one else did because when I woke 1.5 later Aaeon was entertaining all 3 kids in the living room.
We made it to church for 10 am Mass. Ellie did a great job and we are so happy she was able to take part in her special day. My Mom was a wine distributor and was able to offer Ellie the Blood of Christ for the first time just as my Grandparents had for me.
After brunch, cake and presents at the house, I took a nap and got packed for a few days in Clevland.
When I got here last night Joe was so much better! Better than I had seen him before the surgery! It maybe in part to the Indians winning record!
I stayed for a few hours the went went to the hotel. After the Bin Laden News Joe was on Facebook a lot I told him to go to bed!
When I came back this morning he was in good shape. He was bummed he was not going to be in the classroom to talk about the current events. We joked about him lecturing to the others on floor. When he moved out of bed to the chair while they remade his bed he was in a lot of pain! Once he was back in bed and had pain mess he took a nap.
Betsy and Ben are here now on their way back to Maryland.
I have written this on the iPad in fits and starts so sorry if it is disjointed.
Thursday, April 28, 2011
Happy Birthday Joey! Six years ago you made your mark on the world and the place will never be the same.
This will be Memorial Day weekend and our 12 year wedding anniversary weekend. Oh what fun!
Tuesday, April 26, 2011
Thanks to our friends M&C who bravely took our kids out for a while Friday. They took our 3 and their 2 kids for pizza and bowling. I'm told M was thrilled to have new shoes!
Happy Easter!You will not believe this!! Joe was sleeping on the couch the night the Easter Bunny came into the living room and hid the baskets for the kids! Joe did not wake up but was a little creeped out he was in the room with the Easter Bunny.
Sunday was a big day. We all went to Easter Mass Sunday morning after the kids ate a sugar breakfast of Easter candy and waffles with M&Ms. Joe's parents joined us at Mass to help with the kids and I was thankful to actually hear part of Mass instead of drawing robots at the request of a certain 2 year old. Once we got home Joe was ready for a nap so the kids and I went to see HOP. The sign over the pictures on the wall is a Thank You note E made for the Easter Bunny.
Monday was another big day for Joe. Our friend Heather (who should start a personal shopper business) took Joe shopping for a suit. The last suit he had was 1999- 12 years and -50 pounds ago. He found what size he needs but were not able to find what he wanted. They were limited to just Elder Beerman in BG. Joe and I will look again when he is up for longer drives.
Joe has been able to reduce his pain pills and even take care of himself during the day (I'm still working shorter days). He even fixed his own lunch (and left the dishes for me to do!). We have not heard from the drug trail people- they are suppose to contact us. I did speak with Dr. K's PA last week and he was going to check that process. The drugs (as much as I know now) will target the renal cell carcinoma cells that may still be else where in the body. While all 10 lymph nodes removed were all clean there is still a chance some little part is trying to set up home someplace else in the body (but we are thinking positive!)
Until Joe's driving restriction is lifted (2 more weeks) he will not be doing much other than watching baseball, watching movies and reading books for his National History Day Normandy Institute. On a good day he might walk up and down the drive way some.
No easy way to say this so just going to say it. We have not used the word "cancer" when talking to the kids about this and ask others to respect that. We have just told them there was something "icky in Daddy and the doctor had to take it out". M knows that Daddy has a boo boo and he needs to be careful when sitting with him. I even feel weird using the word "cancer" because we did not know it was renal cell carcinoma until it was all removed during surgery. Yes we knew it was possible but I'm thinking positive. I see someone who has cancer as one who has to endure chemo and radiation and all the negative side effects of it. I think we got off with much less than that. I hope to just have to deal with be married to someone with one kidney and the extra caution that is with it.
Thursday J2 turns 6! SIX! VI Hard to believe it has been 6 years since our bathroom became a birthing room. Those new to our stories just know that J2 was born at home in our bathroom. I would need a whole blog to tell that story.
Sunday E has her First Communion. We are looking forward to her special day.
Wednesday, April 20, 2011
Posted by Joe on his FB 4/19/11
I was waiting for him to say things in his own words because he is so good at it.-Katie
We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.
--T.S. Eliot, Little Gidding
Overwhelming. If there’s one word I keep coming back to the journey of the past three weeks, it is ‘overwhelming.’ I can’t describe a lot of what has happened physically, psychologically, and spiritually over the past few weeks without using that word.
The lab results confirmed what was suspected in the CT scans; that the football-sized mass of starboard kidney, tumor, lymph nodes, adrenal gland, and fatty tissue taken out of my abdomen was, in fact, cancerous. You hold out hope right until the word comes out of his mouth – I can’t even explain it. Inside, I knew it was – hell, they told me it almost certainly was! It was certainly no surprise, in the technical sense of the word. But for the word ‘malignant’ to actually be used – well, it’s overwhelming. Even when you know it’s probably not that bad.
The lab results also showed that the cancer had NOT spread to the adrenal, to the fatty tissue, to any of the surrounding lymph nodes. These are all, to put it mildly, good things. Overwhelming things, when one thinks about what it would have meant if these neighboring tissues had, indeed, been invaded by the carcinoma. And it’s overwhelming to think of what it could mean some day; microscopic bits of cancer may still be floating around my body. And some day, they may take root in another dark little corner of my abdomen. I’ll never feel it if it happens; spinning magnets will find it in a picture, and we’ll figure out the next course of action. Absolutely overwhelming.
By Thursday, I was overwhelmed in another way, too. I had an absolutely amazing care staff at Cleveland Clinic; in particular, a nurse named Caryn. I am absolutely convinced that Caryn had more than a little of Nana’s spirit in her. On Wednesday morning, I was writhing in pain. She asked where I would rate my pain on a scale of 1-10. I told her seven. Bullshit, she said, your face says nine or 10. Where some of the nurses had taken care of me, Caryn took command of my care. She got my painkillers changed, and life in hospital got just a little more tolerable. She brought me grape popsicles, and made me smile.
That Friday, I dipped again – an overwhelming crush of being weaned off of the painkillers, and a complete lack of sleep. And the overwhelming support of friends and family made it all right again. More on that in a minute. But there was light at the end of the tunnel – it was decided that Saturday would be my release day, and I was most assuredly done with being in the hospital. Saturday, Katie and my mom and dad came back, and I was sprung from the Clinic a little after lunch, slept most of the way home, and frankly, I remember little else from the massive doses of painkiller they threw down the hatch before the long drive home.
Overwhelming, too, has been a very real spiritual presence in my darkest moments. Father Mark, and our friend Dee, describe it as taking in a big breath of God. My friend Kate describes it as breathing in a purifying light, and exhaling darkness. Again, it’s difficult for me put into words, but I know it and feel it when it happens. Father Mark encouraged me to think of it this way: If we accept that there are only two equal and opposite emotions, love and fear; and then accept that God is love; then the only prayer that makes sense when we feel fear is a prayer for the presence of God, who is love. Whether it’s God, the human spirit, or however you choose to conceptualize it, it’s been a very real presence for me in a manner I can only describe as, well, overwhelming.
Overwhelming in ways I can’t describe has been the depth I have found in relationships with my family throughout the past three weeks. Intangible things, relationships are, and in our relationships is that common thread of love. The past three weeks have taught me just how deep my family’s love for me is. My cousin Marybeth visited me every single day, even when I didn’t know she was there sometimes! My mom and dad have just been there every step of the way, with support and encouragement, with laughs, and with score updates when I couldn’t get the Indians games at the hospital. My sister, I simply don’t know if I’ll ever be able to repay. She was at my side every day, and was a pitbull to chase off the legion of housekeepers, student nurses, and nurses’ aides when I had a meltdown. She was there for everything. And reconnecting in a deeper way with my friend, and my brother (and her husband), Aaron, is a gift indescribable. But most importantly, I learned something about marriage over the past three weeks. Just as the words ‘support and defend’ took on a new and deeper meaning for people in the military just after 9/11, so too did the ‘sickness and health’ part of our marriage vows since this all began. Katie has been stronger than I could ever imagine being if our roles were reversed; she seems to be in 100 places at once in managing the logistics of child movement, maintaining her career, and taking care of me until I’m mostly vertical again. I always felt like I couldn’t love her more after our Encounter retreat three years ago this month, but I was wrong. My love and admiration for her could not be stronger than they are right now.
Most overwhelming, though, has been the love and support from all of you. Your comments on FB and the blog, your phone calls, your letters, have buoyed my spirits when they needed buoying. Those of you who are cancer survivors, you simply can’t know how much your counsel and courage has meant to me. Those who visited me in the hospital – Kennedy, Tom, Brandon, Ross, Janet, Uncle Bob, Ginster, Rick, Bets, Danny, Christine, Erik, Kim, Jessie – I may not remember a lot of details from when you came, but I remember that you came, and that meant everything as my mind wandered into dark little corners. Since I’ve been home, the companionship during the day has made life not just physically easier, but psychologically easier as I’ve had someone to talk with every day, and keep my spirits high. I’ve had more laughs than one should have with Peters and Randy the past two days (Randy, my side still hurts from the flying phone incident), and I have no doubt that’ll continue with Aunt Eileen, Mike, and Lisa the rest of the week. The meals you all have made; the contributions my coworkers made in the form of gas cards that allowed Katie and Mom and Dad to make the trips out to Cleveland in the face of high gas prices; and my legion of prayer partners – well, I think the Dropkick Murphys may have put it best, “thethoughts and prayers of a million strong might keep this fool from dying.”
So has this been overwhelming? You’d better believe it. As Kate W. said the day we went out for the consult, ‘This is going to change your life.” I am just smart enough to know that I’m just seeing the beginning of those changes. There are so many things I hope never to take for granted again, and all of your love and friendship is damn near the top of that list. My friend Kristin always had a signature line from Walt Whitman, “I no doubt deserved my enemies, but I don’t believe I deserved my friends.” I feel that saying in my bones tonight.
Friday, April 15, 2011
Catheter removed- check
Walking the halls- check
Pain pump removed- check
Eating- check
One gnarly scar- check
At 1pm Thursday my schedule opened up so I took off for Cleveland. I did not tell Joe I was coming because I knew he would say no. Kathy has been with him most of the time and she knew I was coming. He was sleeping when I got there so I visited with Christine, Joe's cousin's wife, and Kathy. Friends Kim and Eric stopped by. Many stories were shared from Joe's BG News and Ft. Wayne Journal Gazette days.
Earlier in the day the bandages were removed from Joe's abdomen. Dr. W removed the bandages by ripping them off all at once causing Joe much pain. He also had made the 5 walks in the hall requested by the staff and trips to the bathroom.
The kids and I were planning to go out tonight but since it looks like Joe will be discharged Saturday we are going to wait. I'll make the trip on Saturday to bring him home. The kids will be disappointed but it will be better if it is just Joe and I. Three kids in the van for 2.5 hours when one has not had major surgery is hard so for the safety of all it will just be Joe and I.
No concrete pathology reports from Dr. K yet but someone from his staff checked on Joe and used phrases like "got it all" and "looks good". I hope to get firm results today.
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