I have had a few people ask me if I’m okay, since I haven’ t posted in a while. Rest assured, I’m doing well. In looking back, I guess it HAS been a while. 

Over Christmas we had a nice visit to Maia’s parents in Colorado. I spent most of the time resting and continuing to recover. It’s always great to hike through the Garden of the Gods in Colorado Springs, and see the Paterson and Bernthal clan.  I’m happy to report that the pain has improved a lot! I’m off of all of the pain meds now, not even needing Tylenol. After having over a year of pretty constant pain, it’s interesting how quickly I have starting taking “no pain” for granted.

I’m definitely still in a recovery phase, trying to take stock of what the effects are.  With the surgery and radiation, the back of my tongue has scarred/stuck to the floor of my mouth on one side (it sounds more dramatic than it is). I’m doing regular speech therapy and swallow exercises to stretch the tissue and strengthen the tongue. I have a series of about 15 exercises that I’m supposed to do 10 times each, and repeat this 3-5 times a day (so 15x10x = 750 exercises a day!). When I last saw my speech therapist I told her I expected the frequency of exercises would decrease soon. She wasn’t impressed. She told me to expect to continue to do them for the next two years. Apparently the scarring post-op and post-radiation takes a long time to fully declare itself. I told her that since I’m a doctor, surely the “usual” approach doesn’t apply to me. Her response was something along the lines of an eye-roll and side-eye at the same time... 

My taste is coming back. As predicted, sweet and salty were the first. Spicy food is out for now, and acidic foods are a challenge. The radiation damaged my salivary glands, so things like chips and crackers take some sipping of a beverage to be able to eat them. I also have to keep my body and neck moving – I seem to get stiff really fast. I know things will continue to evolve over the next year or so, but I’m still improving. I’m noticing that I get tired more easily than I did before, too. I’ll be fine until I’m not, and then Ihave to crash. Over time, I hope that I can predict this better.

I am officially back at work, helping out on pall care for a few shortened days last Thursday and Friday. This ends a four-month hiatus from working as a physician. I’ve never taken so much time away! I wasn’t sure how I’d feel about coming back - it was emotional driving into the Regions parking ramp, and a bit nerve-wracking to be back on the wards. Thankfully I could still find patients, restrooms, etc. I was pretty wiped out after the first day. The 2nd was better. I’m starting back working on palliative care, and I still have a few more weeks before I’ll do a 7-day stretch in the hospital (my usual schedule). One of the biggest challenges is going to be easing in, rather than jumping back in to the same schedule and workload. I am fortunate to have really supportive colleagues – the expectations and pressures are all my own. You would think that I would be better about regulating myself after years of working with CLL. But there are so many interesting things to do, and saying no is hard…

In terms of next steps cancer-wise, the hope is that I am cured. I’ll have a PET scan in March looking for residual cancer. If that’s negative, I’ll be in for regular scans (every 6-12 months) to monitor for any signs of recurrence. In the meantime I will (reluctantly) continue all of my speech and swallow exercises. I will also likely back off quite a bit on how frequently I’m posting to Caring Bridge. So assume that no news is good news!

Thanks to everyone who has been following along and offering words of encouragement. It’s going to take time to understand how all of this has affected me, and my family. But we appreciate the love and support. It has made a difficult time easier on us.