A quick update for those who might stroll by here: I had a routine follow-up CT scan at Hopkins yesterday, and it was all clear! The doctor said I'm doing very well. Great news on an anxious day. Don't have to worry again for another 3 months.

I saw my friend Charlie Phlegar last night, and he encouraged me to continue with the blog. It's very rewarding to know that my musings are meaningful to other people. So here I am, in Christiansburg visiting my parents early Monday morning with the latest news.

On the health front, I don't think I've made much progress since the last report. The neuropathy in my fingers and feet has not diminished much if at all, though I have resumed acupuncture sessions to try to address it. I'm not sleeping as well as I'd like, and my energy level and vitality is still not what I'd like it to be (though whose is??). I've become a fan of caffeine like most of the rest of the western world, which I had never been before. And I have to keep an eye on how much I eat, and especially, drink.

But, so what? Almost all of time I feel well enough to be happy. Ok, maybe a little crabby sometimes. But pretty happy! I've resumed playing golf, at my usual mediocre level; actually got in 5 rounds last week, and I walked the full 18 holes on 2 of them. So I think anyone who plays 5 rounds of golf in a week is disqualified from receiving any sort of sympathy. And I'm really enjoying playing again, with my friends Eddie, Dana, and my nephew Jeffrey last week. So that's been really great.

On one round with Eddie, we hooked up with this bro on the 10th hole:

He's 90! He could actually hit the ball pretty consistently, over 100 yards a couple of times. We found him to be quite an inspiration... Though we couldn't understand anything he said. Didn't stop him from talking, though.

The golf bug has unfortunately usurped my other favorite waste of time, I mean pastime, that being creating art. I haven't done much lately, though I did produce this abomination:

News flash: doing portraits is hard! Mouths in particular. I'm going to try to find Judith, my art teacher, and see if I can wrangle a few pointers. She accompanied me to the supply store recently, and I am now equipped with all the paraphernalia I need to start painting at home. I want to get started soon, though I am daunted at the prospect. My early attempts have been far less successful than my endeavors with drawing, yes, even worse than the portrait above.

Last, but best, I have been doing some traveling and seeing lots of people, as well as seeing folks who have looked me up on their travels. It's an impressive list: Mike Barry, Mark and Mimi Corrigan, Bill Huyett, Anne and Ben Philbrick, Glen and Sonja Camp, Pete Wheeler, Maryellen and Betsy Demaret and Kent Langenwalter, Kathryn Peyton, Andy Fertick, and my neighbors Andy Storch and Jonathan Cool. OK, I traveled 50 feet to see them, but they make the list even more impressive. Among other things, I was able to see baseball games in DC and Boston on consecutive nights, which was great fun:

Isn't summer great?! Makes me wonder why we don't declare the whole year summer and travel and visit friends all the time. I guess they call that retirement.

Dan and Carly left yesterday for their adventures, Dan to Costa Rica (!) and Carly to camp near Harrisonburg, and Alex is living and working in DC for the summer, so Allison and I have the place to ourselves for a few weeks. Looking forward to some drinks on the deck, movies, and even some music. If I can stay up past 8:00.

On a more somber note, I do have to go to Hopkins next week for a CT scan to see if there are any new traces of cancer. I don't really even want to think of what that could be like... I'm dreading the trip. But I'm fully expecting good news.

Mentally and emotionally I'm still in about the same place: not really believing this all happened to me. I can remember pretty much every detail, but remembering it is so, so far from actually experiencing it; I guess it's like remembering sex versus actually having sex - though that's maybe not a good analogy. Nonetheless, it is hard to believe I went through all of that... it's like I had cancer, but mine wasn't real cancer. I hope I will come to think of it as just the bad year that I had, that I don't have to worry about anymore. And I do hope that I will continue to feel better physically.

I am still planning to make a video about my whole experience. I've written a draft script, and I have young man in mind for doing the production who would be great. I just have to sell him on the idea. Maybe if I posted his email here and all of my readers contacted him...  Hmmm, I think that's too sleazy even for me. I would use the video to contact cancer support organizations and offer to talk to their patients; if I can encourage and make a difference for cancer sufferers I would be very interested in doing that.

Still thinking about what else I might do with the rest of my life. Maybe teach again, or volunteer, or look for a business opportunity. As usual, I have lots of ideas but no real conviction - yet. Not during golf season, anyway.

Finally, I have decided to have a birthday party! It's August 13th in Great Falls, and I'm very excited about it, even though I'm only expecting about 8 people to come since it's in the heart of the vacation season. If you are reading this and you'd like to come, let me know and I will contact the event staff; I do have some influence with them. I will also try to plan other events around the party, like a golf outing and a happy hour or dinner so that more out-of-towners might come enjoy the full ambience of a Northern Virginia summer. It promises to be a once-in-a-lifetime experience! Though thanks to my good fortune there will be chances for a few more! See you soon.

Today is the three month date since my surgery. I decided to mark it with a new blog post.

First, a health report. I’m recovering nicely from the surgery and cancer. My weight is pretty steady at 150, about 20 lbs less than “normal”; I like being thin, and hope to stay about here. I’m still on a few medications: a sedative to help me sleep, a mood elevator, and a blood pressure drug, but I’m off opiates after almost a year of daily use. I plan to get off the sedative and the elevator over the next few months if I can. My energy level is maybe about 85% of what it was before all this mess, and it gets a little better every day. I can eat anything I want, and my digestion is pretty good as long as I don’t eat a lot of fat or sugar. On the down side, my fingers and toes still have some numbness and it’s possible they may never fully recover; that would be a bit of a drag. Finally, I have some pain and stiffness in my neck and shoulder, a result of a year of lying around and having terrible posture, but I’m in physical therapy and it’s getting better steadily. So, I’d say things are going pretty well with the recovery.

I did have a period of feeling depressed from about weeks 4-8, so I went to see a psychiatrist at Cancer for Life. He told me that all pan-can patients get depressed, that there are documented changes to the brain chemistry, and he prescribed the mood elevator. I don’t like the side effects, but it has helped me with greater energy and initiative. So, most of the time I feel pretty good, though I’m very groggy in the mornings and I never really feel fully energized.

I’m very fortunate that I haven’t had to work during this debacle, so I’m trying to use the time fruitfully and have a lot of fun. I started an art class a few weeks ago, and I am really enjoying doing drawings in pencil and charcoal; this is the best one so far:

Soon the class will start working with paint, which should be great. 

I’m also trying to exercise every day, either walking a few miles in the woods or riding my bike on the paved trail. I did 18 miles on Wednesday, and I was proud of that. Next Saturday I’m starting golf lessons; I’ve played a couple of times since surgery, but I was awful, and I’ve wanted to have some help with my swing for a long time, so I think it’s a great time to take lessons. And, I still watch a lot of sports, especially Caps hockey, which Allison and I have really come to enjoy together. Game 2 tonight!

I do want to go back to work at some point, Not sure what I want to do; perhaps teach again, or do some sort of volunteer work, or maybe even go around and talk to cancer sufferers. It would be nice to start making money again, but I don't know how likely that could be. I'm giving myself another few months to try to decide.

The fact of having had cancer still dominates my thoughts and feelings. I’m stunned when I recall the past year (the anniversary of my diagnosis is next week); how scared I was, how lousy I felt, and how it hung over me like a sword every minute of every day. And now, seemingly, it is all over. I know I’m incredibly lucky to have beaten it. It’s very hard for me to understand all this and find any perspective on it. I don’t feel like I’m describing this very well; but what I’m trying to say is that emotionally I’m a very different person than I used to be, and I can’t help but think about it all the time. 

Last night I sat at a bar while Carly was at the mall and I had a burger and a beer. It was the first time I’d done that in over a year, and it was the best beer I’ve ever had.

I got very emotional over my plate of greasy fries and smeared ketchup, and almost shed a few tears in my glass of amber ale. I know now that life is full of wonderful little things, like cheeseburgers and walks in the woods and sunrises and great novels and perfect 8-irons, and much, much more. Not to mention really big things like friends and children and lovers. I feel so fortunate and so grateful to be where I am today.

(At least I did when I came out of my food coma. I was in such a daze from all that fat, as well as the alcohol.)

I firmly believe that all the support I from friends and family was vital to me in winning this battle. The only bad part of getting well is that I am less inclined to reach out to people, and people are not as quick to contact me. So if you are reading this, please know how much you helped me, and don’t hesitate to get in touch with me any time. I will always be happy to hear from you.

Mainly posting this to mention that I just posted a new comic strip on the other blog, here: http://rickstrailnotes.blogspot.com/2016_02_01_archive.html

I'm gradually recovering. Still feeling discomfort when I eat, but my strength and energy are slowly returning. I'm trying to get out and exercise every day. I need to start getting off the narcotics soon, too.

I'm feeling in a weird place emotionally. Not sure how to get my hands around what I've been through the past 10 months. Sometimes I'm elated, sometimes embarrassed and guilty; sometimes manic and sometimes drained and lethargic; and lots of feelings of uselessness as I watch life go on around me and I've been replaced for the things I used to do. I feel an urgency to figure out what to do with the rest of my life, though I'm not really ready to get started. Just trying to stay patient. And I'm still stunned to not be living every moment with wondering how many days I have left.

Here's the stuff I want to do again the most...

1. Golf
2. Have a cold draft amber ale
1. or a glass of pinot noir
3. Tell my story to people with cancer
4. Ride my bike
5. Eat a great meal at a good restaurant
6. Ski
7. Be warm

I'm not sure how much longer I'll keep up these blogs. Haven't felt like I've had much to say anymore. Time to stop writing and start to get out and doing. Almost time, anyway.

Eleven days since my surgery, another surreal chapter in my cancer story. I'm doing very well, my wounds are healing nicely, my appetite is slowly coming back, and my energy level is gradually increasing. I'm impatient with the pace, of course, but really I couldn't hope for things to be going better.

A few notes from surgery and my stay in the hospital:

• The surgery took about six hours. Of course for me it was instantaneous! I was pretty groggy when I came out of it, but I will always remember waking up to "we were able to get it all"!
• For the next three days they woke me every four hours to take blood and measure my vitals. My blood pressure was sky high, but the blood sugar readings quickly came back to normal. Amazing what just 25% of a pancreas can do. But don't check into a hospital to get some rest!
• On Saturday night,trying to get back to sleep, I apparently hit my pain pump way too many times. So by Sunday morning I was overdosed on Dilaudid, one of the worst experiences of my life. My heart was racing, and whole body was tingling fiercely, and worst of all, I was having gruesome hallucinations that I couldn't stop. I'll spare any more details, but it was a horrible day. By Monday morning it was basically over.
• When you have a very sore abdomen every move you make is a jolt of pain. Fortunately I was able to get reasonably comfortable again by about Tuesday. I am glad I put in all those years of running and cycling, they were worth it after all. Most of the muscle pain is just about gone.
• I saw legions of doctors, nurses, and aides, and all of them were wonderful. Their kindness was so impactful, and I will always be so grateful to Hopkins and the quality of people they employ. 
• Now that I know what the surgeon actually did I can see why his reputation is so strong. It's remarkable that I have recovered so much just 11 days after major surgery.

So, where am I today? Basically I'm still elated to be cancer free! But I do have lots of issues and questions that I still have to deal with. First, my neuropathy (numbness and tingling in my hands and feet) is worse than ever. In another week or two I will look into possible treatments, like medications or acupuncture. My GP told me it should get better within a year or so, but I'm concerned since it seems to be getting worse. Second, my blood pressure; it has returned to normal under the two medications I'm taking, but I will have to keep an eye on it. Third, blood sugar; so far nothing but good news on that front. And last, but most worrisome, is that they may recommend that I do more chemotherapy to make sure all of the cancer is gone. They are going to have to make a pretty strong case, because the last thing I want to do is more chemo, especially when my fingers and toes are still bothering me so much. I think it is a pretty standard recommendation, unfortunately.

As I said several times since last May, throughout the treatment period I tried to stay as uninformed as possible about my situation; when I did learn things they usually made me more upset and anxious. Now that I do know the full extent of the cancer and to what degree the odds were against me, I can only describe where I am today as a miracle! I believe the key factor was that I was able to tolerate 12 rounds of the nasty chemo regimen, which ultimately killed almost all of the cancer. And then of course, the skill of the surgeon was critical. On the spiritual side, I believe the support and love from so many of you family members and friends was crucial to my optimism and humor. No one can measure these things, but I know that they really, really mattered. I am so grateful... to be cancer free, to have wonderful people around me, and to be looking forward to many years with my family.

Finally, words can't express how grateful I am to Allison. I don't know how she did it, but I do know that no one could have done it as well. I am a very lucky man.

What's next? I don't know. Stay tuned.

Feb 2, 2016

Hello,

Rick is doing very well and he will be going home today, earlier than originally expected. He has had some rough patches (Sunday was "the worst day of my life" when he had a few issues with some medications), but overall, he is recovering beautifully. He has his first solid food this morning in almost a week and his digestion seems to be going okay. He is in some pain and is overall pretty tired so we are going to hold off on any visitors until next week. We do have a home nurse lined up to help him during the day. We return to Hopkins on 9/15 to get a check-up and develop a plan for the coming months.

Thanks for everyone for their messages. He got them all and these truly brightened his days here!

I think this is my last post since I am no longer needed here - and that is a good sign for all of us -:)

Allison

Hello everyone,

Just wanted to let you know that Rick is doing very well. He was moved out of ICU today into a regular hospital room where he will spend the balance of his stay here (7-10 days).  His vital signs all look good and the nurses have begun to slowly unhook him from the various monitors, IVs, etc. He is in quite a bit of pain and very tired but is managing well with the help of a variety of medicines. The doctors and nurses here have been awesome, and he is receiving wonderful care here at Hopkins.

He would love to have some visitors this week, starting on Monday, so let me know if you plan to come as he can't have more than 3 people in the room at one time, and he will need some breaks to rest and recover. He can't eat or drink yet and this will be carefully monitored (he is literally allowed only 10ccs of water per hour right now) also no food please.

He sends his love to everyone and he is so grateful for all your support (he dictated that part to me!). Me too as I know he loves hearing from you all.

Allison
703-407-7193