The Hard Question to Answer: How Are You Doing?

We ask this question of each other all the time, right? It shouldn’t be that hard to answer. But how often do we really answer this question honestly and with any kind of detail? My guess is pretty much never. We all say “great” or “good” and move on. It’s a pleasantry ingrained in each of us as an informal greeting and rarely do we really want to know if it’s anything other than the standard reply.

I’m always a little unsure of how to answer the question at first brush these days. I know people are caring and genuinely interested in knowing that things are ok, or at least ok enough. But I also assume that most people don’t want all the gruesome details…unlike my willingness to share them in recent posts. Yes, you’re welcome for that picture of the primary tumor mass. I will say that most have said “gross, but it was really interesting to see it after all this time.” So when someone asks these days, there is that moment of hesitation to gauge exactly how much detail do they really want to here. Some friends are frank about it, “no really, how are you really doing?” Others I can see that bit of blank stare combined with looking to the exits when I dive into a bit more of what’s really going on, and I realized I’ve misjudged the question. I do apologize, because I’m hyperfocused on every aspect of my physical and mental health these days that I tend to dive right in when someone asks. It’s ok to cut me off and say “no, that’s enough. I get the gist of it.” Really, I won’t be offended.

So How am I Really Doing?

With that said, some have asked what’s up since it’s been more than a few days since my last update. Delays usually mean that not a lot has changed or I just haven’t had anything come to mind that feels worth writing. Or in some cases I just haven’t felt the energy to get to or pick up a computer and put fingers to keys.

Today marks two weeks post surgery. I’d say time flies because in some ways that seems like a long time, but it’s also felt like a slow, trudging slog through a muddy bog getting through this recovery process. That sounds a bit ungrateful though. I spent 6 days in the hospital including the day of surgery. But the time I left the facility I was up and walking, albeit tenderly and often holding my stomach to minimize any movement. The drive home was all I could do to keep from doubling over in pain, heading straight for a couch after to rest and relieve the incision and gut pain.

Getting home I have kept up the personal charge to move as much as possible and have been making loops around the neighborhood on my familiar routes. At first my caretakers - read that as wife, kids and in-laws staying to assist us - didn’t let me leave on a walk without “company” each time. They were of course worried I’d exhaust myself or otherwise get hurt along the way without their oversight, and I can’t say there were all that wrong about the possibility. Each walk was a slow affair for several days, getting slightly better along the way, usually followed once again by some couch or recliner time to recover from the effort.

Really strange to go from cycling an extended mountain climb loop to a week later barely graduating from a walker to make it around the block.

But that was a week ago, and now a week later I’m starting each day with a longer walk and even getting on the exercise bike for a slow turn of the pedals to get the heart rate elevated a bit. I’m not setting any speed records and my fitness watch isn’t giving me much credit, but I’m doing it. And then still laying down for a bit after to recover. I really don’t have any choice about that last part as my body throws up the white flag.

More Lessons in Patience

While I am happy with the progress I’ve already made, I’m also trying to be smart about how hard I push things. I’m avoiding the foods they tell me to avoid, eating small amounts but more frequently, and not lifting anything I don’ have to and nothing over 20 pounds. It’s pretty easy to remember not to do those things, because frankly it still hurts to get up out of a chair or from laying down because everything done to the core is still in the early processes of healing. I can push, but only so hard. Some things just take time.

Some days I get up feeling a bit stronger. In fact the other day after a 4:30am waking, which is pretty typical, I was drenched in sweat and had that feeling of when you break a fever. You know that exhaustion of having been drained of energy but somehow feeling somewhat better, even refreshed? I had some hope that day I had turned a corner in healing even though I hadn’t been experiencing any fever or awareness of any infection. I got up again later that morning energized and determined I had turned a corner. I went out for a walk and did a bunch of activities with high hopes and expectations, only to come back midday and collapse into the deck chair to spend much of the rest of the day paying for the exuberance.

Sure I was doing better, but only just a bit from the day before. Gotta appreciate the small steps and not get over confident. Healing takes time. I have to keep repeating that to myself.

How Do You Feel?

This is perhaps the most common variance on the typical question, for those that are perhaps more curious on the current state or of recovery. Maybe not, but that’s how I hear it. It’s another tough one to answer. Short answer is, I don’t feel that great. It does still hurt, and not just along the midline cut from sternum on down. It hurts all over my abdomen where everything was poked, handled, bruised, scraped and cut. All those internal sutures and abrasions still give me a lot to endure while they try to recover. I get sharp pains on my right side below my long right along the diaphragm and liver that last for half a day at a time. You know that sensation you get when you run really hard when you haven’t in forever and it’s more than just a stitch in the side? Yeah, like that but it doesn’t subside.

On a humorous note, in my doctor’s visit yesterday I explained this pain that has cropped up several times with an effort to be thorough and perhaps seek a remedy. Her response, summarized was essentially “Well duh, it’s gonna hurt. We had to work hard there and cut into all kinds of things. It’s going to take time to heal.” Ok, she may have been a little more clinical than that, but that’s the essence of it.

Heather was visiting with some neighborhood ladies at a church group activity (Relief Society for those LDS) and talking to one about how i was feeling. She answered sagely as one that had been through significant surgery summed it up as “You feel like you’ve come a long way and much better, but crappy all the time.” That about sums it up.

And yet I don’t want to sound ungrateful for the healing and progress already made. I definitely am grateful for what the surgeon was able to do, and what she was able to avoid doing leaving many organs beat up but intact and in place. I’m grateful for otherwise good health and all my effort leading up to the surgery allowing me to be rebounding as well as I am. And of course I’m most grateful for the supportive family and friends that are helping me along the way so I can take the time and rest necessary to allow this healing to take place.

So What’s the Latest?

Yesterday was my first follow up with the surgeon after leaving the hospital. Just one day shy of two weeks, this is where they typically see if you are surviving at home, if your body is starting to recover and if any signs of infections or complications are raising their ugly heads. We started off with another chest x-ray before meeting the doc because I’d had some significant fluid and some air buildup around my lungs by the diaphragm because of the work done on and around the diaphragm.

I like my surgeon, mostly because she seemed qualified in every respect both from our discussions and my research into her background. But mostly I appreciate her frank demeanor and willingness to speak directly to our questions and wonderings. She even gave my wife that photo of the big tumor mass without being asked, because she knew from our previous visits I’d appreciate having that visual understanding of exactly what was in me.

My progress report from her was all positive. I’m recovering amazingly well inside and out. She was almost giddy in bringing in the comparative chest x-ray scans to show how in one week the pockets of fluid and air had completely vanished. To have that happen that quickly is not typical and I’d like to think my efforts to get upright and moving each day play a big factor in that.

There were many, many tumors they removed throughout my abdomen, but three primary masses that merited reported measurements. The biggie was 23 x 15 x 5 cm. Multiple separate tumor fragments around it measuring 12 x 10 x 3.5 cm in aggregate. The omentum resection measured 19 x 11.5 x 4.5 cm. The new liver masses removed measured 11.5 x 8.2 x 2.7 cm and 9.4 x 9.3 x 2.5 cm respectively. In short, they were pretty darn big too and overall that’s a lot, I mean a lot of tumor mass removed.

The pathology report came back stating the new large masses by my liver were of the same cancer type. That’s good news in that it wasn’t something completely new, but still unanswered is why they were growing so much quicker than the original mass. The deeper mutation report had not yet been completed. I think they didn’t do it and the surgeon had to submit another request so we are still waiting on that. The mutation report is pretty critical at this stage as it let’s us know if treatable mutations are present. There is only one other second tier drug currently available to try, but the mutation must be present for it to be worth jumping again into an oral chemo. From what I understand it’s another growth blocker that can only hope to suppress and slow the growth of the tumors that remain. Secondarily knowing what mutations are present are what we can use to see if any clinical trials exist for which I might apply and hope to be a candidate. She explained that we need to research those trials before starting me on any other treatment because being on another treatment could potentially disqualify me from a trial. So when we get that report, they present to the local Sarcoma specialist in their tumor conference for review, and possibly refer me to Sarcoma/GIST specialists if they see the benefit of traveling to seek that guidance.

So this appointment left us feeling good about some progress, but plenty of unanswered questions. About par for the course. They pulled the external staples out and lined the scar with steri strips to keep tension down for the next couple of weeks. Pulling the staples is of course not a pleasant process, but after all the poking, prodding and body function ugliness I’ve endured recently I considered it pretty minor. I realized as they were about to pull them out I had never counted them up. Twenty one staples. Not too shabby. A student was attending the appointment and was given the opportunity to pull about half of them. I restrained myself and joked I really wanted to let out a painful scream in jest and see what happened. The nurse thought it would have been hilarious. The student gave me a courtesy smile I think.

The Healing Journey Continues

So if you’ve caught the overriding message of this, it’s essentially that I’m in the thick of recovery, rebounding quite well, but still have plenty of healing road ahead of me to travel. Today is my first day without taking any pain pills. Nada, nunca, zip. So far at least. Last week I dropped the amounts I was taking. A few days ago I dropped of the scheduled dosages of just Ibuprofen and Tylenol and just took it as needed, which was about twice a day. As a result I’ve been feeling more of the general and specific pains, but it all feels manageable. I’d much rather deal with reasonable pain than keep running those drugs through my system. Today my energy has been lower and a bit more acutely aware of points of pain, but also I feel a bit refreshed without the dulling sensation that comes with pain killers.

I am moving around when I feel good, sitting up and trying to do a few things when feeling able, then resting when feeling the need. That typically equates to 2-3 naps a day. What a life eh? The back deck, the anti-gravity chair and the sun shade have become my close friends. We’ve been spending much time together this last week and I think the relationship will continue for a bit.

I’m a long ways from getting back around the Alpine Loop, but that’s my goal. If you haven’t seen the video of the ride two days pre-surgery, check out the video George made to document the effort and the message. Thanks my friend.

Oh, and today’s the last day to order t-shirts for the order we’ve been putting together. Thank you to all those that have supported me and this message with your kind donation and I hope you love wearing the shirt when it arrives. My good friends at YBA Shirts will be printing these up just as soon as I get all the order tallied and over to them.