We have all heard the metaphor that life is like a roller coaster. It has its ups and downs. But really, lately I feel like my life takes Run Away Mountain at Six Flags and kicks its butt (that is an amusement park here in Dallas for you non-Texas readers). I have been happy, I have been sad. I have been feeling good, I have been wallowing in pain. I have been optimistic, I have been beaten down. Keep in mind that these changes sometimes don't happen over weeks but happen in the same day. "What do you expect considering what you are going through?" I have been told many times. I don't know. I have never been through anything like this before.
A week and half ago I went to my daughter's soccer game at 9am on a beautiful Saturday morning. I started to feel some pain come on. I took some pain meds and did my best to grin and bear it. However, by lunch time I was lying flat on my back on the couch unable to really get up. I had extreme pain in both knees, both hips, both shoulders, and both elbows. Strangely, my back really wasn't bothering me. Where was this pain coming from? Earlier that week I had my monthly massage and left there feeling really good. Now here I am unable to get off the couch. Talk about roller coaster. I ended up spending that whole day, literally until I went to bed, lying flat on that couch. I loaded up on the pain meds and tried to ride it out. Fortunately, college football was on to keep me entertained.
Given my current health condition I am trying really hard to listen to my body. I am keeping a pain log so that I have a record of what hurts and when and what I may have done to cause it, and how I treated it. Just looking for any pattern or trends that may help in my battle. But I couldn't make any real sense of this latest pain outbreak. It had these characteristics, but not those. It felt like this, but a little different. The best I can figure at this point is that I had a small reaction to a cold. I ran a low fever at one confirmed point and probably had at another also if I had taken my temperature. Pain meds that help with fevers seemed to give me more relief than others. That all seemed to indicate the cold scenario. But it wasn't conclusive. And one thing I hate is loose ends.
Then my mind goes down that dark path. What if this is my body shutting down? What if this the cancer taking over and I am on the start of the end? When I first met with the doc down at MD Anderson he felt it necessary to give me the prognosis of somebody with stage 4 lung cancer as I have. The typical patient lasts about 7 months. Here I am at about 8 months from the initial diagnosis. (Everybody join in and sing "Happy you lasted longer than the typical cancer patient with stage 4 lung cancer to you" to the tune of "Happy Birthday") Granted, he also said I am not the typical cancer patient. The next date he threw out there was 2 years. Is that how much I can expect? The last number he threw out was that some live 5-7 years. Better, but still not good enough. If the end is now about 4-6 years away then I am still missing way too much of my life.
How do I get my body back on top of this again? Is it even possible? I have lost about 30 pounds from my peak weight during chemo. I know it is strange that I actually gained weight during chemo, but I did. My bones are showing when I look in the mirror. My mind seems to still be good. I still have a belief that I can get back to where I was pre-noma. Just hope I am not fooling myself.
Tuesday, October 19, 2010
Thursday, October 7, 2010
Happiness: A Better Perspective
In a recent blog on Harvard Business Review, a blogger astutely observes:
What makes Josh a beautiful human being is *all* the emotions he exhibits, even when happiness isn't anywhere within his grasp. A while ago, when asked what attracted me most to Josh (enough to marry and stay married for 17 years), my reply was that Josh loves me for who I am, not who he wants me to be. He accepts all the crazy emotions, obstinance on certain topics, irrational arguments, overly cheery demeanor in attempts to bring everyone in the household up, slave driver tendencies...I could go on and on, but I'll spare you.
Josh has good reasons to not be happy right now. He's hurting most of the time unless he's taken enough pain medications to dull the aches. He's tired because he doesn't sleep well. He worries about why the pain is back after the "reprieve" during chemotherapy. The neuropathy in his hands and feet seems to be getting worse. Radiation has only slightly lessened the pain in his lower back and somehow just a few minutes under the beams doesn't seem at all adequate. Time without a visit to MD Anderson feels strange (the next trip isn't until November) and somehow out-of-routine.
But despite all this, he gets excited about working on the conversion of our back patio into dining room, pauses a TV show to really look at the nice living room and cabinets to gather ideas for that next project, and details out all the mistakes made in the construction of any cabinet. He challenges others with good questions and his own ponderings about the meaning of life. He throws the football with his son. He goes faithfully to his daughter's every soccer game and even helps out at practices more often than he really feels like doing. He smiles at and with me, encourages me.
I was talking with Josh this week and let him know that I wished I could switch places with him. For two reasons, really. One to take away the pain from him and bear it myself instead. Two to see how I would handle the situation as the fighter not the cheerer.
We're still on the long journey, the marathon with no known finish line. The quote from a Vietnam POW included in the aforementioned blog post provides great perspective: "You must never confuse faith that you will prevail in the end — which you can never afford to lose — with the discipline to confront the most brutal facts of your current reality, whatever they might be."
"Happy" people are some of the dullest people I know. And yet happiness is the state to which so many of us doggedly aspire.I have often talked (both here on the blog and within in-person conversations) about enjoying the "Happy Josh" and enjoying when Josh is in his "happy place." While maybe aspirational, how limiting.
What makes Josh a beautiful human being is *all* the emotions he exhibits, even when happiness isn't anywhere within his grasp. A while ago, when asked what attracted me most to Josh (enough to marry and stay married for 17 years), my reply was that Josh loves me for who I am, not who he wants me to be. He accepts all the crazy emotions, obstinance on certain topics, irrational arguments, overly cheery demeanor in attempts to bring everyone in the household up, slave driver tendencies...I could go on and on, but I'll spare you.
Josh has good reasons to not be happy right now. He's hurting most of the time unless he's taken enough pain medications to dull the aches. He's tired because he doesn't sleep well. He worries about why the pain is back after the "reprieve" during chemotherapy. The neuropathy in his hands and feet seems to be getting worse. Radiation has only slightly lessened the pain in his lower back and somehow just a few minutes under the beams doesn't seem at all adequate. Time without a visit to MD Anderson feels strange (the next trip isn't until November) and somehow out-of-routine.
But despite all this, he gets excited about working on the conversion of our back patio into dining room, pauses a TV show to really look at the nice living room and cabinets to gather ideas for that next project, and details out all the mistakes made in the construction of any cabinet. He challenges others with good questions and his own ponderings about the meaning of life. He throws the football with his son. He goes faithfully to his daughter's every soccer game and even helps out at practices more often than he really feels like doing. He smiles at and with me, encourages me.
I was talking with Josh this week and let him know that I wished I could switch places with him. For two reasons, really. One to take away the pain from him and bear it myself instead. Two to see how I would handle the situation as the fighter not the cheerer.
We're still on the long journey, the marathon with no known finish line. The quote from a Vietnam POW included in the aforementioned blog post provides great perspective: "You must never confuse faith that you will prevail in the end — which you can never afford to lose — with the discipline to confront the most brutal facts of your current reality, whatever they might be."
Tuesday, September 28, 2010
You've got to love morphine
Thanks to the proper dosage of pain meds I have been able to find, as Anna calls it, my happy place. Unfortunately, I had to bump it up to some of the big boys. But between the morphine and the Celebrex, I am now for the most part pain-free. And that allows me to be happy.
I finished my sixth session of radiation today and the doc seems to think that the relief should start coming anywhere from the seventh to the tenth round. I just hope it comes. I haven't had any side effects as of yet and that is good. I will start trying to wean myself off the pain meds to test the waters sometime between the 8th and 10th session.
Not much else to report. I don't have another appointment down at MD Anderson until November 10th and that allows for an uninterrupted string of weeks at home. Feels kind of weird. Not complaining though. Hopefully the tumors are behaving themselves and that will lead to many more weeks at home.
I finished my sixth session of radiation today and the doc seems to think that the relief should start coming anywhere from the seventh to the tenth round. I just hope it comes. I haven't had any side effects as of yet and that is good. I will start trying to wean myself off the pain meds to test the waters sometime between the 8th and 10th session.
Not much else to report. I don't have another appointment down at MD Anderson until November 10th and that allows for an uninterrupted string of weeks at home. Feels kind of weird. Not complaining though. Hopefully the tumors are behaving themselves and that will lead to many more weeks at home.
Thursday, September 23, 2010
Happy place
I asked Josh last night where his smile went and what it would take to bring it back. His answer, "I don't know." When I ask, rather often and hoping for a positive answer, how his day is going or how he's feeling or how he slept, his common answer is a monotone "OK" or that sound you make when you put your hand out, palm down and shake it a bit...something like "eeh."
I feel like the wife on City Slickers (we haven't had a movie reference here in a while so thought I'd include one).
Here's proof:
(Josh's mom and my folks all partook in the whirlwind weekend as well.)
But alas. Throughout the game, Josh rarely smiled, did little cheering, and spent much of the time standing near the concessions since his son couldn't see well and had decided it was better to watch the game via the TVs up in the concessions area. The night before spent "sleeping" on an air mattress instead of a bed did nothing good for his back pain, so he spent the majority of Saturday feeling really lousy. Our two days (one up and one back) driving 17-20 hours through the night I'm sure didn't help either, even though we split up the driving fairly evenly (at least on the way home). Sleeping in a minivan is not ideal for almost anyone (the kids did amazingly sleep soundly).
I miss the "happy Josh." I see glimpses of that side of him occasionally and celebrate those times, doing what I can to extend that moment of life, however brief. In the meantime, I resist the natural urge to follow him down and instead continue to cheer-lead, smile, cajole, hug, comfort. I wish I could do more to help.
I feel like the wife on City Slickers (we haven't had a movie reference here in a while so thought I'd include one).
Barbara: Go and find your smile. (she says to Billy Crystal's character, her husband Mitch)Unlike Mitch, Josh doesn't think an adventure involving horses and cows would bring his smile back. I thought maybe the trip to Michigan we just returned from would put a smile on Josh's face that lasted more than just a day. We not only got seats 15 rows up on the 20 yard line behind the Michigan bench for the football game on Saturday, but also got a behind-the-scenes tour of Crisler Arena (and got to meet Coach Beilein, the basketball coach) and The Big House (including the $85K/year, 3-year commitment new luxury suites) AND got to spend 20 minutes playing on the field, kicking field goals, punting, throwing, running the length of the field, doing handstands on the big "M" in the middle, etc.
Mitch: What if I can't?
Barbara: We'll jump off that bridge when we come to it.
Here's proof:
(Josh's mom and my folks all partook in the whirlwind weekend as well.)
But alas. Throughout the game, Josh rarely smiled, did little cheering, and spent much of the time standing near the concessions since his son couldn't see well and had decided it was better to watch the game via the TVs up in the concessions area. The night before spent "sleeping" on an air mattress instead of a bed did nothing good for his back pain, so he spent the majority of Saturday feeling really lousy. Our two days (one up and one back) driving 17-20 hours through the night I'm sure didn't help either, even though we split up the driving fairly evenly (at least on the way home). Sleeping in a minivan is not ideal for almost anyone (the kids did amazingly sleep soundly).
I miss the "happy Josh." I see glimpses of that side of him occasionally and celebrate those times, doing what I can to extend that moment of life, however brief. In the meantime, I resist the natural urge to follow him down and instead continue to cheer-lead, smile, cajole, hug, comfort. I wish I could do more to help.
Pain, pain go away!
I guess that super-hero Halloween costume I have been designing will have to be put on the back burner for now. The ability to fly, climb walls, or shoot lasers from my eyes due to the radiation that I have been submitting myself to just has not materialized. In fact, it hasn’t even lessened the pain in my lower back.
After three treatments, the pain is just as prevalent as before. I have grown weary of the chronic pain that starts in my lower back and shoots down the leg of its choice. I tire at the ache that I feel in my right shoulder. The numbness in the front half of both my feet because of the chemo-induced neuropathy is just plain old. Because my children sometimes read this blog, I will Disney-ify my pain rant language. Chronic pain sucks!!
It really affects my work productivity. I don’t sleep as well. And, as Anna will testify to, it really affects my mood. I was hoping for some quick relief from the radiation sessions, but I guess I may have set my hopes too high. Now my thoughts shift to the more drastic: will it work at all? Because this is a one shot deal. Due to the toxicity I can’t have this procedure done again down the road. This is our one shot at eliminating the cancer in the back and returning me to feeling once again like a 39 year old should feel.
I shudder to think that if it doesn’t work that I am condemned to live out my natural life with this back pain. Or the alternative of upping the pain meds until my liver or my stomach give out.
But I tell myself, "Just chill." I am not even one third of the way through the treatment yet. Give it time. Let the photon beams do their job. I was just so wanting there to be some progress by now.
After three treatments, the pain is just as prevalent as before. I have grown weary of the chronic pain that starts in my lower back and shoots down the leg of its choice. I tire at the ache that I feel in my right shoulder. The numbness in the front half of both my feet because of the chemo-induced neuropathy is just plain old. Because my children sometimes read this blog, I will Disney-ify my pain rant language. Chronic pain sucks!!
It really affects my work productivity. I don’t sleep as well. And, as Anna will testify to, it really affects my mood. I was hoping for some quick relief from the radiation sessions, but I guess I may have set my hopes too high. Now my thoughts shift to the more drastic: will it work at all? Because this is a one shot deal. Due to the toxicity I can’t have this procedure done again down the road. This is our one shot at eliminating the cancer in the back and returning me to feeling once again like a 39 year old should feel.
I shudder to think that if it doesn’t work that I am condemned to live out my natural life with this back pain. Or the alternative of upping the pain meds until my liver or my stomach give out.
But I tell myself, "Just chill." I am not even one third of the way through the treatment yet. Give it time. Let the photon beams do their job. I was just so wanting there to be some progress by now.
Tuesday, September 21, 2010
Diary of a superhero wannabe
1 pm, September 21, 2010
Subject myself to two six-million volt photon beams of radiation. One through stomach and another through the back. Hope to induce superhuman characteristics similar to Spiderman or Superman. At a minimum, hope to eliminate the pain in the L5 vertebrae of my lower back by killing the cancer present there.
1:30 pm, September 21, 2010
Feel normal. Attempts to climb walls or jump over our house fail. Enter dark closet to see if I glow. Also fails. Maybe it just takes a little more time to kick in. Will schedule fourteen more rounds of radiation at Texas Oncology to see if I can't hasten along the development of superhero powers.
1:45 pm, September 21, 2010
Do notice a slight lessoning of pain in my lower back. In the words of Shrek: "That'll do, Donkey. That'll do."
Subject myself to two six-million volt photon beams of radiation. One through stomach and another through the back. Hope to induce superhuman characteristics similar to Spiderman or Superman. At a minimum, hope to eliminate the pain in the L5 vertebrae of my lower back by killing the cancer present there.
1:30 pm, September 21, 2010
Feel normal. Attempts to climb walls or jump over our house fail. Enter dark closet to see if I glow. Also fails. Maybe it just takes a little more time to kick in. Will schedule fourteen more rounds of radiation at Texas Oncology to see if I can't hasten along the development of superhero powers.
1:45 pm, September 21, 2010
Do notice a slight lessoning of pain in my lower back. In the words of Shrek: "That'll do, Donkey. That'll do."
Friday, September 10, 2010
Update
I finished my last battery of tests from MD Anderson and here are the results.
- Tonsils. Tested negative in both for cancer. YEA! (but kind of already suspected it so not surprised)
- Head MRI. Turns out I have a brain and, better yet, it seems to be okay. No evidence of disease. YEA!
- Chest CT scan. Primary tumor is stable. One mass grew a tiny bit and the other shrank a tiny bit. YEA!
- Back MRI. They did find a slightly larger metastatic mass there on the L5 vertebrae. This is what is causing my back pain. BOO!
Tuesday, September 7, 2010
Another Trip to MD Anderson
Today is Tuesday and this evening I will once again hop on I-45 heading south. I think I will start lobbying for a high speed rail to be constructed between Dallas and Houston. On my plate for tomorrow I have a full day of tests along with a side or two of waiting around. Two MRIs, a CT scan, and a chest X-Ray to look at my insides again to either confirm or deny what I feel is going on inside me. I will end the day with another round of accupuncture. Thursday is the appointment with two docs to read the results of the tests. Hopefully, Thursday is a good day.
Thursday, September 2, 2010
Not Just Yet
I get asked quite often how I am doing. Seems like an appropriate question to somebody in my condition. Most of the time my response is a simple, “Fine,” or “Alright.” I have never been one to up and spill my troubles so casually. I’ll give status reports and summaries of doctor’s appointments, and sure, if pressed, I will probably go a little deeper. But to tell you truly how I am feeling would take a Herculean effort to get it out of me.
I am afraid. I am truly and deeply scared. I am afraid I am going to leave my wife without a husband, my kids without their father. I am afraid that I won’t be able to hug and kiss them and gaze into their beautiful faces. I am afraid that there is going to be so much life left to live by my loved ones and that I will never get to be a part of. I am afraid that the pain my body is feeling indicates that the tumors are growing. I am afraid that this cancer is going to overcome this body no matter how hard I fight it. I am afraid of the pain and suffering of loved ones caused by my death.
I accept that I will die someday. Just not so soon. Please, not just yet.
I am afraid. I am truly and deeply scared. I am afraid I am going to leave my wife without a husband, my kids without their father. I am afraid that I won’t be able to hug and kiss them and gaze into their beautiful faces. I am afraid that there is going to be so much life left to live by my loved ones and that I will never get to be a part of. I am afraid that the pain my body is feeling indicates that the tumors are growing. I am afraid that this cancer is going to overcome this body no matter how hard I fight it. I am afraid of the pain and suffering of loved ones caused by my death.
I accept that I will die someday. Just not so soon. Please, not just yet.
Wednesday, September 1, 2010
Thanks to the family up north
Want to say a quick thanks to the whole Van Sligtenhorst clan that reside up north. Our family had a great vacation up there and a wonderful family reunion. In fact, my kids are already trying to make plans to come up again next year. It was great to reacquaint with some and put faces to others that I had only met on Facebook. I also especially want to thank you all for your prayers and support during these trying times. It has been difficult at times and it is very comforting to think about all the people I have in my corner. With time and distance it is easy to become disconnected. This may sound weird but I know that even though we are family, you treated us like family. Not some blood relations that you haven’t seen for 20 years and live way far away. You welcomed me and my family back with open arms and love. Thank you.
All are welcome to come to Texas whenever you like. I would recommend you avoid the summer months. If you thought it was warm during the reunion, you would melt in Texas in August. Oh, and for those I talked about the rest of our vacation in Niagara Falls, you were right. The Canadian side of the falls is better.
All are welcome to come to Texas whenever you like. I would recommend you avoid the summer months. If you thought it was warm during the reunion, you would melt in Texas in August. Oh, and for those I talked about the rest of our vacation in Niagara Falls, you were right. The Canadian side of the falls is better.
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