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.

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).
Barbara: Go and find your smile. (she says to Billy Crystal's character, her husband Mitch)
Mitch: What if I can't?
Barbara: We'll jump off that bridge when we come to it.
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.

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.

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."

Friday, September 10, 2010


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!
Plan of action is to attack it with some radiation. Doc wants to do 10 days of radiation in a row but each session only lasts about 15 minutes. I now have to decide if I want to live in Houston for 2 weeks or if I should just get it done up here. Easier to get it done up here but probably trust MD Anderson a little more to do it right. Decisions, decisions....

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.

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.