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Archive for May 2014

Getting Back To Work

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I’ve been feeling remarkably well all things considering. Just over a week from surgery, the biggest effects I’m recovering from are:

  • I still have stitches in my head, though I’m expecting those to come out in the next few days.
  • I have to take 4mg of Dexamathasone every six hours. That’s a steroid (the NFL would ban me) that’s been really hard on me. It’s raised my blood pressure, given my insomnia and made me feel anxious at times, has started to affect my appetite in unattractive ways, and is starting to throw in some acne just for fun. Can’t wait to get off this stuff.
  • My right leg strength, flexibility, and mobility are all pretty good. And the sensation in that leg is improving though still affected. I had the first of what will likely be only three physical therapy sessions on Friday where the therapist assessed me and gave me a bunch of exercises to do to help reestablish my sense of proprioception (awareness in space) of my leg and foot.

After the PT Friday, I got a chance to visit work again for the first time. It was terrific getting to see so many friends again. I truly enjoy working at Neo Columbus and am looking forward to getting back to full time. The initial guidance from the surgeon was to tell them I’d be out 4-6 weeks. Well, I’m actually already diving back in, though mostly from home for a bit and not yet full time.

While there, I did our normal Friday Lunch and Learn talk for the group. These are typically about something technical that we use at work (a ruby gem we might be using and finding value in or how we’re trying to improve our javascript testing capabilities), but I took the opportunity to talk about gliomas and my recent experience.

Gliomas Lunch and Learn from Mike Doel on Vimeo.

Written by mdoel

May 18, 2014 at 10:54 am

Posted in Uncategorized

Post Surgery Update

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My surgery on May 8 went well, spending just under about 80 minutes total in the operating room. I don’t remember much of that as the anesthesiologist went to work quickly. I woke up in the recovery room and spent a couple hours there before being transferred to the Neuro Critical Care unit where I was soon reunited with Julie and my sister Deb.

Somewhat surprisingly, it wasn’t the craniotomy itself that was the most uncomfortable – it was the after-effects of having been intubated. My throat was very sore and I had to master ice chips before graduating to jello. I also had these cool wraps for my lower legs that had air bladders to inflate and deflate over time to simulate circulation. I could feel it happening on my left leg, but not my right leg. This was really the first sign of something we expected – much of the sensation below my knee in my right leg is now gone. Maybe it will come back over time. We’ll see. Fortunately, I have reasonable strength and flexibility in the leg.

Late in the afternoon on Thursday, we were thrown for an emotional loop. We were visited in the room by Dr. Mohammed Hamza – a Neuro Oncologist. His specialty deals with chemo-therapy treatments for cancer patients. He asked if we had seen the MRI that had been taken just prior to my surgery. We had not, so he brought it up for us. In the process of showing it to us, he highlighted enhancements in the imagery that were revealed. He indicated that this was suggestive of a higher grade tumor, possibly even a grade 4, instead of the lower grade tumor we had come to expect. At least, I think that’s what he told us, because both Julie and I found it difficult to concentrate on actual words after hearing from him that he thought it might be high grade. He emphasized that we needed to wait to see the final pathology, but it was difficult to hear him and not start thinking of the worst.

The next morning, the hospitalist’s assistant  – a nurse practioner – was one of the first to visit us. She was in a no-win position. She had seen his initial notes, but had neither the experience he had nor the pathology we were waiting for to give us any of the answers we wanted. It was very stressful. She was quickly joined by Dr. Praveen Dubey who is a radiation oncologist. His role would be in providing radiation treatments for me as part of an ongoing treatment plan. He had the experience to answer our questions. And we had had enough time to formulate a bunch of them since first seeing Dr. Hamza. Still, the overwhelming feeling coming out of our conversation with him was to prepare for the worst. We started telling a few close friends, but didn’t want to worry the kids until we had a more complete picture. That was a difficult decision.

Also on Friday was my first attempt at getting out of bed. The physical therapist walked with me up and down the hall. I did better than I expected given that I couldn’t feel the lower half of my right leg very well. But I managed to walk a few hundred steps and not stumble in any significant way. 

Later that day, the I was transferred out of Neuro Critical Care and into a step-down room in the Brain and Stroke unit of Riverside Hospital. That meant I got a roommate (Dave) and less regular unprompted evaluation (down to once every 4-6 hours instead of once per hour). By Saturday morning, they concluded I was doing great and ready to head home to wait for the pathology results.

Yesterday was Mother’s Day and I managed to get around pretty well. I put in over 4000 steps for the day and even managed to do the dishes and cook a pot roast. Julie and Deb weren’t entirely comfortable with my level of activity all the time, but I was happy to be up and moving.

Today, right about noon, we got a call with the pathology results. And after almost two days of feeling resigned to being told it was high grade, Dr. Hamza’s office called to tell us that it was a grade 2 oligo-astrocytoma. That’s a low grade “mixed” glioma of astrocyte and oligodendrocyte cells. We still have much research to do on this, but this is unquestionably good news compared to what I had been expecting after the first visit with Dr. Hamza.

There are many next steps to come. These include scheduling physical therapy so I can get better control over my movement. It includes follow-up appointments to get my sutures out of my head and meetings with Dr. Hamza, Dr. Dubey, and Dr. Robert Caveliere of the OSU James Cancer Center (2nd opinion) to better understand what my treatment plan is like. I may still end up with some combination of chemotherapy and radiation therapy, but at this point, I don’t think we’ll know until the end of the month. 

For now, the short term plan is getting enough rest to properly heal while slowly incorporating other activities to get me back to as normal as I can. The original prognosis called for me to be out of work for 4-6 weeks. Given how good I feel already, on day 4, it’s hard to see how I won’t be back at least part time sooner than that. But I’m not going to jeopardize my health and rush back.

Finally – I want to thank all of you again for the love and support you’ve provided over the last days and weeks. It has been so overwhelming. Julie and I had many visitors in the hospital. My sister flew in from California to help out. I’ve gotten so many cards, letters, and prayers from people – many I don’t even know and from states far afield. Prayer really does help and I have been the beneficiary of it. Even if you are not a spiritual person or a follower of Christ like I, please do know that you all have acted in a Christ-like manner to us. The warmth of your embrace and your positive thoughts, prayerful or otherwise, is appreciated more than you can possibly know.

Written by mdoel

May 12, 2014 at 8:21 pm

Posted in Uncategorized

The time draws near

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We’re in the home stretch leading up to my surgery now. Much of the time, it still feels not quite real. I’m still mostly asymptomatic, and yet I’m about to let some guy open my skull with a drill and cutting tool (“like they do a jack-o-lantern” as my friend puts it) and get to work cutting the bad stuff out – or at least as much as is possible without doing too much other damage. And yet just three days ago I ran 13.1 miles. Is this really about to happen?

ImageJulie has put a sign on our bedroom door. It’s a line from one of her favorite country songs and she uses it to count up our time together since that initial seizure. It makes me happy to see it and is one of many ways that people have shown their feelings for me. I especially like that she’s left room for so many tick marks. I truly have been so blessed along the way by your warmth and compassion. I’ve received dozens of cards and way too many people to count telling me that they’re praying for me. I feel them and thank you. Whether it was driving me to/from work or arranging a surprise Skyline Chili lunch that included current and former colleagues at work, my friends and family have made me the beneficiary of more love and kindness than anyone really deserves.

I particularly want to call attention to those who have provided support and love to my family. This whole thing is more difficult on them than it is on me – not because I am special or unique. I believe this is true all of the time. The family is burdened – emotionally, physically, logistically – just as much, if not more, than me. And yet it’s me who gets the lion’s share of the direct support. So, for those of you who have expressed kindness and said a prayer for them, know that I am even more grateful for that as I am for what you’ve done directly for me.

The 13.1 mile run I referred to earlier was the Cap City Classic here in Columbus. It was the culmination of a “Run for God” ministry that our church participates in. As you might expect, it’s a combined physical and spiritual journey that helps you get closer to God and I highly recommend it (particularly if the class is led by my friend Ben Reed). At the start of the class, we were asked to pick a word to focus on for the duration of the class. My word was “humility”. It’s been unreal how strong a role that word would come to play in my life since January.

It began with a run where I spent time thinking of how runners demonstrate humility in celebrating personal records, even for folks in the back of the pack. Runners are also forced to make themselves aware of their own limits lest they risk injury.  These initial thoughts carried through to conversations I had with colleagues around town who had agreed to let me talk to them about what separated good consultants from poor ones. The message was consistent. The best consultants were those who showed up ready to learn from their clients before arrogantly suggesting solutions.

I gave a talk on humility at the Columbus Ruby Brigade. It wasn’t really good and I felt humbled by my lack of preparation. And then a few days after that, Jim Weirich passed away. Jim was one of the people in my life who best demonstrated what true humility was. I was forced to reassess my understanding of the word. The joy, openness and approachability Jim showed to everyone dramatically changed how I came to understand it.

And now I find myself in a situation where my understanding shifts yet again. Yes, humility is not thinking too highly of oneself. And yes it’s making everyone you come into contact with feel special. But it’s also about making yourself vulnerable and recognizing your dependence on the help and service of God and others.

I am the first born son of a first born son – for seven generations. My mom told me that more times than I could possibly count as I grew. Whether it was her intention or not, the message in my mind was clear. Be proud of who you are and be an independent and responsible person. Up to a point, it’s hard to find fault with that. It’s very much made me into the kind of person I am. But it’s not really a message of humility. To be truly humble requires you to embrace your dependence on others.

By far, the biggest adjustment for me in the last 6+ weeks has been this forced dependence. It’s frequently uncomfortable and not very natural to me. But it has been a gift. I never would have considered a brain tumor a blessing. But the things I’ve learned by going through this process have helped me to understand that I’m a better person, and closer to what God wants of me, when I attempt to be truly humble, in all subtleties of the word. I’m not sure it’s possible to be completely successful, but I know I have to keep trying.

And so it is that I now think about what’s about to happen in the coming days and weeks. I can’t help but again reflect on the love I’ve received and the wisdom I’ve gained. And I will very soon be stripped bare of any semblance of independence – at least for awhile. Humility is coming whether I want it or not.

The prayers you all say for me and my family warm my heart. My prayers are for discernment of God’s purpose in my life and for peace of mind, love, and support for my family and friends.

God bless you all and thanks again for everything you’ve done up to now and everything you continue to do.

Written by mdoel

May 7, 2014 at 1:47 am

Posted in Uncategorized