Monday August 5: More Good News, an Expected Tragedy, and When is the Bounce Back Exactly?
More good news is that the MRI I had 7/26 also came back clean - no metastatic tumors found (or anything else of note other than some minor stuff that no one’s concerned about). I actually have my doubts as to whether they performed the correct scan, but for now I’m choosing to save that discussion for later. My blood work is better, though only white blood cell counts are back to normal (meaning risk of infection is normal). The hemoglobin (=energy, roughly) is inching its way back into normal territory but is not there yet. Their guess was it would return to normal September sometime.
We had a lovely northern Wisconsin trip with one notable exception: my father died, which was expected though of course no one ever knows when exactly that will happen. Feeling that various parts of him had died over the last few years and especially weeks and days, and being there in time to make him aware we were there in person, and that I was once again healthy and cancer free, made it easier. Still. There was a warmly affectionate and well-attended memorial for him that made it easier.
Who knows whether it’s the low hemoglobin, the 9 months of atrophy, the incredible assault on my body (with the very welcome goal of keeping me alive), the stress from all of that, the pushing myself to get better, the general angst of life, the fact that no pain-free day has gone by following surgery six months ago, or most likely, all of the above — but the reality is I’m not back to normal yet. I have limited energy, both physical and mental, and even when waking up after a good night’s sleep, I usually feel tired immediately. There are times when I want to lie down after having been up for two hours. I’m happy if I can last 6 or 7 hours during the day without lying down. I know the general trend is upward and look forward (without much patience lately) to fully bouncing back.
Still keeping my thoughts on those Mediterranean sunsets.
Saturday July 6: Good News Continues, Mostly
The really good news is that the CT scan came back clean - no metastatic tumors found (or anything else of note other than some minor pleural effusion that didn’t concern the oncologists). Though finding metastases was unlikely, it was possible and would have ben bad news indeed. Also had a little round of less than good news, though more in the annoying category than bad news. My blood work shows historical lows on white and red blood cells, as well as hemoglobin. The practical effect of that is that I’m still at risk for infection, and I’ll continue to be tired until my poor bone marrow can recover from the 12 chemo rounds and start cranking out blood cells at a normal pace again. Also I have to keep the port in for as long as two years. A drag but a minor one.
Heading to the farm Monday, to arrive Tuesday since I wasn’t sure I could deal with an all-day drive at this point. Can’t wait.
Saturday June 22: It's Been a While Again, and The End of the Tunnel
Starting more or less now, we're in a different (but much better) slog of getting back into normal shape with normal stamina, and normal thoughts and activities. So much of my life for the last 8 months has been measured in two week cycles. I'm working on adjusting my thinking away from that. The overarching feeling in our household at the moment is being tired - too tired even to be super exuberant at this outcome we were hoping for.
What's next on the medical plan, you ask? A CT scan 6/29 and follow-up with the oncologist 7/1. I'm planning to ask the oncologist when the port removal will be. Sounds like the standard protocol is to keep it in, just in case, for a while. A little reminder.
My timeline for getting back to work is to start a limited part-time era in July (not to include vacation at the farm), ramp it up to near or full-time in August, but with limited client interactions so as to keep the stress levels lower, then our excellent September vacation, then we hope more or less back to normal Oct 1, a nice one-year milestone from the diagnosis in 2018.
Oh yes, "our excellent vacation". In late September, to celebrate 30 years of marriage and the end of this terrible 8.5 months, we're taking a trip to Corsica and Paris. I can't wait to open our balcony door in Corsica and watch the sun set over the Mediterranean. Breakfast on the terrace in Paris will also be nice, I'm sure.
Tuesday May 7: It's Been a While, and Light at the End of the Tunnel
I've just been recovering from the surgery mostly, and as advertised started the second and with luck final round of chemo on April 1, in a nice gesture from the gods: "just kidding". Nope, they weren't kidding. I'm halfway through chemo round 2 now, 3 down and 3 more to go assuming the side effects aren't too troublesome. The peripheral neuropathy is certainly annoying, and ditto the general knockdown in energy and the cold hypersensitivity, but in the end the calculation re: "insurance chemo" is pretty clear: keep going until you can't. I believe I'm 100% cancer free right now but am willing to take the hit in the name of insurance against a recurrence. (Hey that rhymes)
I finally got the nerve to ask my oncologist a direct question about the future, and learned something. It turns out that in something like 30-40% of cases like mine, the cancer recurs because even the combo of chemo and HIPEC (the surgery) might leave a few stray cancer cells. Given my generally healthy self (and a renewed interest in being as healthy as possible), I should easily be in the 60-70% of people for whom it will never recur. Basically 2:1 odds in my favor on average (the oncologist, who necessarily has a different view than the average person, said "pretty good odds"), and I should be on the high end of that. So that's good news (in context), and I plan to do whatever I can to stay in the good group.
Even in the worst case, we can repeat the chemo+surgery+chemo pattern that was so successful this time, if needed several times. That surgery would still be brutal but considerably less brutal than the February one since they wouldn't need to slice open the old abdomen from sternum to below the belly button, and take out pieces of me.
There has been a certain "heads down, one foot in front of the other" aspect to my life since the surgery that is now morphing into the kind of happiness you get contemplating an upcoming vacation, and a strong desire to put all of this behind me forever. The Zen master is still there somewhere but is mostly resting up while I recover. In the end I'm fragile still on multiple fronts but at my core so happy to see the light at the end of the tunnel. Visitors (all of you in particular) have been very helpful in keeping up the old spirits. Thank you all for that and the thousand other kindnesses.
That the last chemo (and port removal, a nice symbolic milestone) is now weeks and not months away is something that makes me increasingly happy as that milestone approaches. That medical science has advanced enough in my lifetime to turn what would have been a nightmare of treatment and probable death sentence 50 years ago into an unpleasant 8 months of treatment followed by a return to normal life is amazing and makes me very happy. Many, many people have it a lot worse than me. People, it turns out it's going to be OK after all.
Friday Mar 15: Ow
Turns out major surgery is hard. I don’t recommend it for the faint of heart. A month later, there are plenty of side effects and recovery is still incomplete and ongoing, and yet I feel so much better than I did a month ago. The last month has been long, sometimes difficult days, one after another, with no vacation breaks.
On the plus side, the surgery went extremely well, but was highly involved and has an extensive recovery period. In addition to removing various hunks of my abdominal anatomy, leaving 10 separate incisions to heal, the surgeons believe they have removed not only the primary tumor (in the appendix) but all metastatic tumors, leaving behind only a “pepper spray” of micronodules on the abdominal wall that the subsequent chemo bath may already have destroyed.
Also I got to come home from the hospital after 6 days and not 10-14 as advertised.
In what amounts to insurance, I’m scheduled to have 6 more doses of chemo starting 4/1 once I’ve recovered from the surgery, ending sometime around early July. The prospect of yet more treatment is daunting (especially the way I feel now) but at the end, the expectation is that I’ll be cancer free and will enter “surveillance mode”. I’m a little shell shocked now but that phrase “cancer free” certainly sounds good.
The slog continues, but summer is coming and I expect an upward trajectory.
Thursday Feb 14: St. Valentine Special
It’s an exciting day here at Crystal St. I have my chart of the 11 timed surgical prep things I need to do at various points in the day. We’ve got all of the clear liquids, the laxatives, the antibiotics, the steroids, the cleaning wipes for my chest and abdomen. All in all, very romantic.
I should get a call today from Rush with tomorrow’s surgery time, though the nurse who called yesterday to see if I had any questions said it looked (tentatively) like the surgery is scheduled for 9:30, which if true would mean the surgery would likely complete by 7:30 PM (!). By the way, I got official confirmation yesterday that I have no blood clots in my legs. Good to know.
We had a nice visit to the Garfield Park Conservatory this week. I love going there on a snowy, cold and grey winter day because inside it’s tropical-feeling, very humid and mostly warm. Also as you can see, so unlike the inside of our house visually.
I don’t have big life and death thoughts to share that I haven’t already. I’m so happy that Megan will be well supported tomorrow during the extremely long and emotional day. Amy’s thoughtful gifts for the hospital stay have already lifted my spirits. I’m grateful to live in an area where very good medical care exists and to have had such a positive experience (in context) with literally everyone I’ve interacted with at Rush. I’m grateful to have a surgeon who has performed this operation successfully hundreds of times. I’m thrilled to have our excellent son staying with us. It was truly great to see both (Chicago) sides of the family this week. Well wishes from friends are pouring in, and visitors in the 10-14 (or so) day recovery in the hospital are lined up. (Please coordinate that with Megan.) And the outcomes from the surgery are generally very good. I know I’ll be in rough shape tomorrow evening especially and also probably most of the weekend at least, but I know there are lots of options they have at the hospital to help me through that. I’m feeling ready, or as ready as I can be.
Saturday Feb 9: Onward
So I apparently passed both tests, clearing me for surgery. I say “apparently” because there’s nothing official from a physician in my record for the blood clot screening. However, the tech who did it say “no clots in either leg”, and since those kinds of scans are apparently easy to interpret, I’ll run with that one. The stress test yesterday was wildly comprehensive, featuring a nurse, a cardiologist and an ultrasound tech, 10 minutes on the treadmill and three separate echocardiograms, one before, one just after I got off the treadmill, and one after heart rate recovery. All results are normal, with a small and apparently not significant finding of “rare PVCs”. I got a score of 9 (I hope of 10) and an indication that I’m at low risk for a “cardiac event”.
I’ll confess that I was a bit cast down earlier in the week since there were so many question marks and opportunities for things to go wrong. There may also have been some of that “why me” mood. I feel I’ve worked hard so far and it has for sure been hard, but now I have the real challenges ahead. With positive test results a lot of that has cleared away and my mind moves toward getting ready.
A surprise extended visit from Gavin starting today also has lifted my spirits greatly. It will be so nice to have the nuclear family all together at home.
Now it’s on to the prep for the surgery, which is again comprehensive, and then Friday’s surgery.
Tuesday Feb 5: Let’s Get Real
Megan and I met with the surgeon and three of his minions today. Surgery is scheduled for a week from Friday, the 15th, which means I get to do a bowel prep as a romantic gesture on Valentine’s Day. It’s contingent on me passing a stress test, and I also have to have my legs checked for clots. Both of those are scheduled this week (Thu and Fri). I get to stay in the hospital for up to two weeks following surgery depending on progress in getting my digestive system back on track and “disease burden” (i.e., how much cancerous material they find). The good news is that instead of the two surgeries I had heard my oncologist mention, it’s only one. The bad news is that it’s very likely they’ll want me to do 6 more rounds of chemo once I’ve recovered from the surgery. All in all, it’s sobering but hey, if it makes me better I’m all for it.
Tuesday January 29: Hey Look, It Worked!
So I got two pieces of good news this week following the CT scan yesterday. The first one, from my oncologist, was that the pulmonary emboli from November (you remember, the ICU stay and all) were gone, and more importantly, that the nodules that had metastasized from the appendix were nearly gone. The second piece of good news came following a cross-disciplinary meeting with a radiologist, surgeon, GI doc, and my oncologist. The summary: “We just discussed your case. The recommendation is to meet with Dr. Pappas to discuss surgery since the cancer responded so well to chemotherapy.”
Meaning… less savory options like more of the same chemo or a different, more aggressive, kind of chemo are now off the table and we’re going straight to a finish line of sorts. Not that future chemo is off the table, but a great sign for the near future. That phrase “since the cancer responded so well to chemotherapy“ makes me very happy. I have a consultation with the surgeon in a week, on Tuesday 2/5, and will of course know more after that. I haven’t really processed all of this yet but for now, deep relief and gratitude are the prevailing emotions.
Wednesday January 16: Chemo 6
Just a quick note to say done with the hospital outpatient part of the sixth infusion. I once again have my ball of chemo now until early afternoon today Wiped out Monday but a little better Tuesday, now feeling it more on Wednesday. A CT scan is scheduled for 1/28 now, with a medical team consult on my case scheduled for 1/29. Next steps could be surgery, or more of this same chemo, or a different one. I can get up to 12 doses of it (or even more), it turns out.
Had some great visits and family time since the last time. I have to be careful sometimes to remember I’m fighting this illness. Shooting up blood thinners in the skanky bathroom of a Devon Ave Indian place was a fun experience.
Monday December 31: Chemo 5
Just a quick note to say done with the hospital outpatient part of the infusion. I have my little ball of chemo in a fanny pack now until early afternoon Wednesday. Deeply tired after coming back but I think that was mostly the (now) uncharacteristic early wakeup. We had to leave the house at 7:20, if you can imagine. (These days I set my alarm for 9:30 or so, entirely so I can inject myself in time, and usually sleep that long no matter when I go to sleep. Luxurious in one way but also a reminder that I apparently need the rest for the big fight happening inside me.)
The low days probably start in earnest tomorrow afternoon. I should be “back” (feeling more normal) by end of the weekend.
Sunday December 30: I Am Grateful
Breathing. Walking. Digesting food and enjoying eating it. Sleeping normally. Going out to a restaurant. Being able to lift more than 8 pounds. Not being nauseous. Seeing, hugging and talking with my wife, son, family, friends. (Speaking of which: the boy just left our house. Boo.)
Who knows which of those things will leave me when, or which of the thousand possible complications and side effects will show up. In the meantime I'm truly grateful for all of the things that make life amazing at times. Time with same family, extended family, friends. All of the support lots of people have shown for someone who's down (but not out by any means).
No matter that my situation isn't great. The strange fact is that there are plenty of people around the world who would trade lives with me in a second.
Kate Bowler in the NYT, 28 Dec 2018 wrote:
The terrible gift of a terrible illness is that it has in fact taught me to live in the moment. But when I look at these mementos, I realize that I am learning more than to seize the day. In losing my future, the mundane began to sparkle. The things I love — the things I should love — become clearer, brighter. This is transcendence, the past and the future experienced together in moments where I can see a flicker of eternity.
- How Cancer Changes Hope, https://nyti.ms/2GHHfjG
In the end, I'm not happy to be part of this terrible club, but am happy for the life lessons and all of the life too: all of the sometimes mundane things that somehow make us all happy. I want Gavin to be here all the time but the truth is that I’d mostly just look at him without much new to say.
The slog continues through end of January when, after six (double) chemo infusions, the medical team will assess my progress, and then we'll see what happens next. Chemo #5 tomorrow - we have to leave the house at 7:30 which will be a stretch for us.
Sunday December 9: You Look Great (vs. The Slog)
So getting real for a moment, chemo is not super fun, nor is having pulmonary embolism, not to mention, say, cancer. They all add up to cumulative worry, random pains, tiredness, wacky schedule full of doctor’s appointment and worse, medications, reminders to exercise, eat at certain times, needing to inject myself (did I mention it was twice daily?), and other random strange things happening in the body that you chalk up to one of the above, TBD, or not ever determined because something else comes along to think about. There you have it, the slog I’m (we’re) in now, halfway through at least the first round of chemo. The pattern, the weekly rhythm, is established and there’s a bad week and a better week (one hopes). Seven more weeks or so of this. It feels like walking on a snowy, un-shoveled and hard to navigate sidewalk, for a long time.
There is also, of course, or maybe not of course but still, the Zen bright side and genuine happiness from all angles: visits with family and friends, endless offers of support from, say, 50 people, and of course my beautiful, excellent and immensely supportive wife, who lives with me and knows so well how to take care of me. Plus it’s still an experience (horrific at times but at least interesting), it’s still life, and I can enjoy a bagel brunch, a sunny day, reading, laughing, a nice hot shower, being able to walk and drive and be a sort of normal human, with the best of ‘em. So even in the slog there are bright moments and in general my positivity (which you can bet I’m recording daily and charting) is at 4 out of 5.
One thing I’ve noticed (that I appreciate) is that many people who haven’t seen me in a while, or not since the diagnosis, mention that I look great. (Gratifyingly, these are almost always women.) I think this is because they’re not sure what to expect and they see someone who looks normal. Though family visits right after my ICU stay might not have fallen into that category. It surprises me sometimes because I feel normal (at least in the weeks when I’m seeing visitors), though I understand it’s a compliment and a positive thing.
Tomorrow is chemo round 4 of 6 (early, they want us there well before 9 if you can imagine the rudeness) and the slog will continue with a likely sinking into the low-energy, glazed eyes territory for a few days next week. Hoping to come back as usual during the weekend.
Thursday November 29: Long Time No See, Part 2
I think you all know this, but for the record…
Not the best week last week. That “not feeling so good” in the last post was probably a symptom I didn’t yet understand. Spent 2 days in the ICU following an episode of blood clots Monday that culminated in pulmonary embolism. Fortunately the 3 clots weren’t large enough to do what the ICU doc called a “crazy” procedure to “bust the clots”.
I couldn’t do the usual Thanksgiving, instead resting at home on doctors orders. On the plus side, had a surprise visit from the boy and nice visits from lovely family.
I’m now on blood thinners (twice a day self-injections, not super fun, probably will need to be on them for at least 6 months) and feeling better than last week for sure.
Though the chemo round I had Monday (see post-infusion shot walking to the parking garage) is making me very tired now — this is the typical bottom out day — and I’m sure the embolism doesn’t help anything. Slept almost 13 hours today.
I’ll update more later.
Wednesday November 14: Long Time No See
Hey there. I’m doing fine. Sorry I haven’t updated this in a while.
I decided to maintain this “private” blog for a smaller audience since I feel due to us handing out this link to many people that there are now too many people reading the other (original) blog to want to spill more embarrassingly transparent thoughts on cancer. ( I am a boy, after all, and a Crowell to boot.) So please don’t share this link with anyone; I want it to be only family and truly close friends. I’ll put everything I post on the other blog on this one too, so you can just use this link instead from now on.
Chemo round 2 was indeed rougher than round 1, and I can foresee that trend continuing, but oh well, the feeling that chemo’s not so bad after all couldn’t really have lasted. By “rougher” I mostly mean that I got more tired, the rebound took longer, and I’m pretty sure I’m not going to rebound as high this time, since I haven’t yet and it’s day 10. The good news is that I still have 12 days left before the next round to see what I can do.
Having said all that, I’m pretty good. We’re still learning and adapting (another key characteristic needed for this little journey). For example I now have an excellent (actually super dorky) pair of ski goggles that I bought because the wind was getting behind my sunglasses and was unpleasant at best to feel on a cold day. Funny (“funny”) when your eyes immediately hurt from being outside. I’ve been learning to wear a glove to touch anything cold: anything in or recently in the fridge, metal doorknobs, shampoo that was too close to the glass brick window. Well, I don’t wear a glove for that last one but I’ve moved them away from the glass brick.
No real peripheral neuropathy, so I’ve been playing more piano. Also I started back to work this week, which has been interesting and (probably no surprise to anyone else) more challenging that I thought. I get tired a lot more easily and can’t do anything sustained for more than an hour at best. So learning how to do that as well. Fortunately my boss is very understanding and supportive, and I can basically make up what I want to do.
In a shocking development, we are now owners of a small microwave. All these years without one, but prior to getting the microwave, if I wanted, say, milk on cereal, I had to let the milk warm up before using it, tedious at best. Now: zap! And I have some nice lukewarm milk. Entering the 21st (really 20th) century for real.
Had a great dinner on 11/11 (a favorite day of mine, as you might have guessed) of polenta and ratatouille cooked by JGC, and enjoyed JJG’s company.
That’s kind of it. Always love hearing from anyone on this list.