Hi, this is just a quick post to let you know that everyone’s biopsies came out cancer-free, yay! We had three members of the family with suspicious lumps and bumps that needed removed and biopsied in the last couple of weeks. Although actually, now that I think about it, this isn’t just a quick post to let you know about our happiness about everyone getting negative results. This is a quick post to nag us all (you and me both) about getting our cancer screenings done!
For example, did you know that, “The American Cancer Society recommends people between the ages of 20 and 40 get a professional skin exam every three years – especially if they live in sunny climates. This recommendation jumps to once annually for people over age 40.“
Uh…oops. I…need to do that! I’m old! And I have blond/red hair! And I live in Tucson! And I am outside as much as possible because that’s what makes me happy! And before I lived in Tucson, I lived in Albuquerque! There’s not much atmosphere between you and the sun up there in Albuquerque. So yeah, I should go do that. Pronto.
Also, do your mammograms. The guidance is, “Women between 40 and 44 have the option to start screening with a mammogram every year. Women 45 to 54 should get mammograms every year. Women 55 and older can switch to a mammogram every other year, or they can choose to continue yearly mammograms.” Mammograms are fast and easy, somewhat uncomfortable, but not invasive. No prep, no IV, no nothing. Easy-peasy! It can’t get easier than this, so just go and do it.
Ok, yeah, it’s a bit uncomfortable. Sure, let’s talk boobs for a minute! For those of you who have never had a mammogram, how it works is you’re supposed to stick your boob into a machine between two horizontal plates so they can x-ray it without x-raying your entire chest. Big-boobed women always whine about mammograms because they have a lot that gets smashed flat into those machines. But think a minute about small-boobed women’s mammogram experience.
Some of us have boobs so small that they don’t stick out far enough to even get into the darn machine! So the technicians are tugging and tugging on our boobs, and we’re pushing up against that machine like we’re trying completely merge into one human-machine cyborg, but there’s still next to nothing sticking out far enough to get between those x-ray plates except one itty-bitty nipple. The technicians are frustrated and it feels like it’s your fault because you somehow aren’t woman enough with your little-boy boobs. Actually, all the technicians I’ve ever had were super sweet about it; I’m just joking here. Bottom line is, the mammogram appointment is not the most dignified moment of one’s day regardless of boob size, but just get it done and laugh about it afterwards.
And finally the important one that most people dread, but isn’t really all that bad – the colonoscopy. They used to say to get your first colonoscopy at age 50, but they’ve lowered that to 45 because the rate of colon cancer in young people is going way up. And don’t just rely on one of those “mail in a sample” tests they are advertising nowadays. Sure, those tests might (might) catch it if you have late stage cancer, but you want to catch it a long, long time before that. Trust me on that. My colon cancer treatment in 2020 was a living nightmare and I will never be the same again. A routine colonoscopy is a walk in the park on a beautiful day in comparison.
Also, the at-home colon cancer tests are useless to protect you against getting cancer. Whereas colonoscopy is not just a screening, it’s a protective measure! During your colonoscopy, the doctor will remove all the polyps that can turn into cancer. I had three polyps removed during my routine colonoscopy last week. That’s 3 polyps that could become cancerous, that weren’t there a couple of years ago during my previous colonoscopy. The doctor was able to remove them right then and there, during the colonoscopy. So it’s not just a screening! It’s an important cancer preventative measure.
As my regular readers remember, I could have died because I didn’t do my first colonoscopy until age 53, at which point, I had a tumor and it had started to spread into lymph nodes – stage 3 colon cancer (with no symptoms). So do your colonoscopies early! Once you’ve done your first one, they will be able to tell you when you need your next one. It may not be for another 10 years if you were all clear with no polyps. I do them a lot more often than that, of course, now that we know I’m such a high risk.
Ok, I’m going to quit nagging you now. But one more note – this post is not a comprehensive list of all the common and recommended cancer screenings out there. It’s just the 3 I felt like talking about this morning. You know how to google. Figure out what your priorities are for your age and risk factors, and make those appointments!
And here’s my accountability – John and I are going to get our skin cancer screenings done asap, right John?
“IMPRESSION: 1. Stable exam. No evidence of recurrent or new metastatic disease in the chest, abdomen or pelvis. 2. Additional findings as described.”
Those “additional findings” include liver cysts, kidney cysts, and nodes in my lungs, all of which sound scary but apparently do not look like cancer on the scan. They have several of my previous scans for comparison, which helps them understand what they are looking at.
This marks 4 years in remission, and I have 3 more to go in order to be declared “cured”.
Today is my 4-year anniversary of my cancer surgery, and I am still in remission. It’s been a rough road but I am very grateful to be alive today.
I’ll have another set of scans done in a couple of weeks. We are only doing the scans yearly now, which is nice. For some cancers they consider you “cured” after 5 years, but in my case it’s 7 years. So, three more years to go!
I had another CT scan this week. As usual, my results are great…No cancer found! Yay! Double Yay!! But as usual, there’s just enough worrisome bits that I never quite feel like I can let down my guard. The little spots on my lungs? They aren’t growing and aren’t thought to be cancer. All those liver cysts, some of which are quite large? Just harmless cysts. Not cancer. No cancer anywhere. And yet, why is my white blood cell count abnormally low and continuing to drop? Why are my neutrophils low? Why is my calcium high? And why is my CEA cancer marker slowly climbing? It’s still low, below the reference range, but why has it been creeping up?
I am superstitious. I have a superstition that goes something like; if I’m too optimistic, the universe is going to laugh and prove me wrong. People like me touch wood a lot. “The weather is perfect…knock on wood.” “Everything is going great…knock on wood!!” I’m the sort of person who imagines that we will die the day after our life insurance lapses. But if our lives are heavily insured (ie. expecting the worst), then we won’t die. It’s sort of a complicated version of Murphy’s law.
My superstition is all a bunch of bullshit, obviously. But the cancer could come back. I’ve been tenaciously and determinedly keeping myself as ready as possible for the very real possibility of a cancer reoccurrence (or more accurately, a discovery of “cancer-never-went-away-and-we-just-didn’t-realize-it”).
But something happened to me over the weekend that has made me wonder if maybe I am ready to start walking down the road labeled “no cancer” even though I don’t have the ability to distinguish between “not yet cancer” and “no cancer”.
Laura visited this weekend. And in addition to having a lovely time, as I always do when I get to see my kids, I also had a bit of an eye opening discussion with her. Laura works for an amazing consultancy, a large national (or international?) firm that truly walks the talk. This is the sort of progressive, employee-oriented firm we all wish we could work for. And she’s very well qualified to work for such a firm. She has two master’s degrees; an MBA and one in data analytics. She’s doing very well in her career.
I was congratulating her, and I must have said something about how I would have loved to have been able to work for a company like hers. And she said, why not? I could. I could work, in fact, for her company.
No way? No freaking way. I don’t have an MBA, I’m not a data scientist or a programmer, what would they do with me? This consultancy has clients like Google and Facebook and all those big names. What would I have to offer them?
My career seems disjointed and fragmented to most people. Life coaching, environmental science, planning, management, a little of this, a little of that. My resume has periodic 3-year gaps. Except I have always been coaching. I have been steadily coaching since 2001, without any breaks whatsoever. But my past employers have always completely discounted my life coaching, like it’s some weird hobby. They’ve eyed it with suspicion – at best.
But Laura says, oh not at all. Apparently her colleagues don’t all have MBA’s and they’re not all programmers and data scientists. She said I could be in the business advisory services group. She said many of her coworkers are actively working on getting coaching certifications. Really? They are? I was certified 22 years ago.
Which brings me to another issue. I’m old! Right? Isn’t it the culture of the youth? Does anybody even hire anyone past age 40 nowadays, much less past 50? But no, she says her company prides themselves on being “multi-generational” and she has plenty of coworkers older than me, even though her company is dynamic and not some old dinosaur.
I don’t know. Maybe I’m not old and washed up, foggy-brained and out-of-touch, with a fragmented resume, unable to make even half of what I made in my prime. Could I still be in my prime? Most of my friends – many of whom are fellow cancer survivors – are in their early 70’s. They’re happily retired baby boomers. Part of me feels right in there with them. And yet – I’m not in my 70’s and I never retired. I was just in the midst of a job change when cancer and a pandemic threw me off track. Presumably, I could work another decade. Maybe I’m only 2/3 of the way through my career? Is it time to start back up again?
How would it feel to interview with a bunch of young faces looking at the dates on my resume that start out with the number 19? Degrees in 1993 and 1999, and coaching certification in 2001. I’m not used to being the old one in the room. I’ve never actually worked for someone younger than me. I’m at the age where that’s going to start happening now. But you know what? I think I’m fine with that. If they are.
Laura made some suggestions about some refresher training, and she’s been helping me with the newer business terminology. The tables are turned and my daughter is now my mentor. Maybe that’s what makes me old!
My kids have always kept me young. They’ve introduced me to newer music, kept me up to date with the changing social norms (non-binary!) and now Laura’s helping me with career strategy. I’m lucky to have kids I can learn from as I claw my way back from the brink of being old.
First of all, today is my dad’s 80th birthday. Happy birthday, Dad! Unfortunately he is spending his birthday getting over covid. At least he is past the worst of it. It’s a big sigh of relief that he and my mom are both recovering, even though his celebration of his 80th will have to be delayed.
I also have very good news on the cancer front. There is a new test called Signatera, which is a method for detecting a potential reoccurrence of cancer. Cancer cells release DNA which circulates in the bloodstream. The new method analyses the DNA from your specific tumor and then looks for that specific DNA in a sample your blood. It can give an idea of how much cancer might be circulating before it has grown tumors that are big enough to spot on a scan.
It’s an early warning system for people who know the specific DNA of their tumor. Signatera is a new test, so they were not routinely doing it 2 1/2 years ago when I had my tumor out. By the time I first heard about the test (on Facebook) about a year ago, I figured it was too late for me to do the test.
During my oncology visit in March, my doctor suggested we do the test. I didn’t understand how that would be possible, but apparently tumors are routinely kept. I thought that sucker went out in the garbage 2 1/2 years ago! My doctor’s office contacted my previous medical team in Boston, and located my tumor. When they were ready, they had me come in and do a blood draw at the Tucson office this summer.
Then we waited, and waited.
I had been told to expect that we would find small amounts of circulating tumor DNA, so the first test would be a baseline. We would then repeat the test over time and watch to see if the circulating DNA was going up or down. So I was expecting the “good news” of a low baseline, and then hopefully it going down even lower over time.
When I got a negative result in the mail yesterday, I was momentarily confused. Obviously, when you’re looking for cancer, negative results are great. But I had trouble believing it, since I had been told to expect a baseline value that would hopefully be low. Did the test even work? Was it a meaningful negative result, or just some sort of null?
They told me I would see a low value, not a zero value. I guess they probably wanted to make sure I didn’t panic if the test found small amounts of circulating cancer DNA, because that would not be unusual. Maybe they didn’t think to mention that it could be a very, very low value of zero.
I’m calling this more evidence for NO CANCER! Not only are they not seeing any tumors during my scans, they aren’t even seeing any cancer tumor DNA floating around in my blood. I am hesitant to get my hopes up too high because I want to stay emotionally strong and ready for the worst should that ever happen. But for now it looks like…I might be doing really well!
Of course I’ll still need to keep scanning, and I assume we will do the Signatera test again too. Meanwhile, it’s such a relief to be consistently getting negative results!
My CT scan results were essentially unchanged from before, which is good news.
They are still watching a few very small nodules in my lungs, which have not grown, and are probably not cancer, but they can’t tell for absolute sure. They are too small to biopsy and are likely just scars from some sort of lung irritant, like the time I had pneumonia when I was a child.
There are also still cysts in my liver, which is fine as long as they are just cysts and not cancer. Some people just have liver cysts for no apparent reason. My theory is I’ve taken too many over-the-counter painkillers, like Tylenol, for a lifetime of migraines. I made that up, so don’t quote me on that. But I know that stuff isn’t good for you. At any rate, as long as they’re just cysts and not cancer tumors, it’s fine and don’t need to do anything about it.
They also did blood work. My white blood cell count is still low and slowly dropping; they don’t know why, but they are now thinking that it may just be normal for me. I would be more comfortable if I could see an up and down pattern. They were low before we discovered my cancer, rose slightly after treatment and have been slowly dropping since. My doctor says not to worry because even though my white blood cell count is low, the differentials (the percentages of the different kinds of WBC, such as neutrophils and lymphocytes , etc.) look fine, and apparently that’s what matters. I’m not entirely convinced, but worrying won’t help anything.
My CEA (Carcinoembryonic Antigen), which is a general cancer marker and not particularly accurate – is still very low (low is good). It is ever so slightly rising over time, but well within expected variation. I would like to see it moving around up and down, rather than just slightly up over time, but it’s still very low and considered fine. Again, I don’t like the pattern, but the absolute number is quite good.
My doctor is going to look into doing a new blood test called Signatera. I had read about the new test, but assumed I couldn’t do it because it looks for DNA from your own particular tumor. Well, my tumor was taken out over 2 years ago. I assumed we were too late to do this new test. But apparently it is standard to keep a bit of everyone’s cancer tissue after surgery. Seriously – they store everyone’s cancer somewhere forever?! My doctor in Tucson is going to contact my doctor in Boston and get that info. Then once they have the DNA from the tumor that they took out of me two and a half years ago, they can look for that same DNA currently circulating in my blood.
Here is more information about the new test: https://www.natera.com/oncology/signatera-advanced-cancer-detection/
Our first signatera reading probably won’t actually tell us much because it won’t be zero. There’s always a few cancer cells floating around. We’ll need to see what it does over time. We just want the amount to be stable – not climbing. Climbing can indicate that the cancer has established itself somewhere and started growing.
Bottom line: they did not find any cancer, yay! Caveat: it’s never simple or straightforward. We are not out of the woods yet, but it is still looking good. There is no treatment we need to do right now; we are just watching and waiting. My next blood test will be whenever they are ready to do the new signatera test, and my next scan will be in 6 months.
I’ve been cheerfully posting about our various exploits in Tucson and Albuquerque, but the reality is, these last few weeks have been a bit of a struggle for me. Everything is fine, don’t worry. Everything is fine except my mood!
A few weeks ago we packed up and moved most of our personals and clothes back to Albuquerque to get out of the way of the remodel starting in Tucson. That was a lot of work and stressful. Once we got to Albuquerque I had to unpack everything and try to get organized. I didn’t have places to put everything because we didn’t bring all our furniture back. I brought back my clothes, but not the master bedroom furniture set to hold my clothes.
Then three days ago we drove back to Tucson again after having been in Albuquerque for about 10 days. I apologize to all my friends there who didn’t even know I was in Albuquerque. I’ve been too overwhelmed to keep up with everyone.
Now we are trying to finish packing up the house in Tucson. Everything that we didn’t already pack up and bring to Albuquerque, we are packing up to store in boxes in Tucson to get it out of the way of the remodel.
I don’t do well in the middle of house moves, remodels and similar transitions and upheavals. When my stuff is in a disarray, I’m discombobulated to the point of being nearly incapacitated. I need my structure, my routines, and my stuff that supports those routines.
So why do we keep doing this? Moving and remodeling, moving and remodeling. Do I forget how much I hate it? No, I remember, but I go ahead and do it anyway because I’m motivated by a sense of progress. And there’s nothing like a remodel for an in-your-face sense of progress!
I don’t know John’s motivation, but I’m guessing he’d rather create what he wants himself than pay twice as much for a house that isn’t to our taste. We tried to find a nice house at a higher price point that didn’t need remodeled – that was our original goal. But we couldn’t find anything we liked.
As we searched online and toured houses in 2020 we kept saying to each other, “This much for this? This isn’t worth that much! I don’t want to pay that much for this! Why is it so expensive?”
Many of the more expensive houses had been already remodeled, yes, but usually different sections of the houses were done at different times by different owners in different styles. Nothing flowed. Nothing felt like it maintained a consistent character.
That is not surprising, of course. It is expensive and invasive to remodel an entire house all at once. Most people just do a project at a time. A bit one year and a bit another year, rarely making it through the entire house before they move away. But after years of scattered, one-off projects, the houses often end up feeling disjointed. Or if the house had been recently flipped – remodeled all at once by an investor – invariably it was done in the currently popular color schemes (gray), in a muddled “transitional” style, using low-cost materials.
Nothing we saw felt like somewhere we would want to live. It wasn’t until we started looking at less expensive houses in the more modest (older but not old enough to be cool) neighborhoods that we started liking what we saw – except what we saw was – potential.
We both loved this house from the moment I spotted it on the internet.
It had been partially remodeled several times in the past, and was indeed a mishmash of styles with some serious issues (like nowhere in the kitchen for a refrigerator). Yet it still maintained enough of its original look and feel for us to picture what direction we could take it. More importantly, it was cheap enough that we would have the money to do it. There had been no upgrades done recently except air conditioning and a few other things we were happy with, so it was basically a blank slate. We struggle with the remodel process, but we’re going to love it when we’re done.
Meanwhile, as if life wasn’t complicated enough, we’re going to Seattle for a month! Seattle? Yep, nearly a year ago we reserved a small and surprisingly affordable guesthouse in Seattle for the entire month of August. It was a reaction to the tropical mosquitos that swarmed Tucson in August and September last year after unusually wet monsoon rains. Plus, ever since my cancer scare, we’ve been trying to do bucket-list fun stuff and not wait for retirement.
John grew up on the lakes of Minnesota, and I’ve always wanted him to experience the Puget Sound, where I raised my kids. Plus the northern Cascades have some of the best hiking in the country. And August is the only month in that region that isn’t rainy.
So far, the timing of our August reservations in Seattle seems to be working out perfectly for the remodel in Tucson. With luck, a lot of the most disruptive parts of the remodel will happen while we’re gone. Our floor tile is due to arrive soon, so we’re hoping our contractor can get the floor tiled in August. That is an invasive job and we will be happy to not be there for it!
Our kitchen cabinets are not expected to arrive for another 6 weeks, so that’s unfortunate. We’ll be back from Seattle by then, so after a quick stop in Tucson, we expect to spend September in Albuquerque, while the kitchen is being done.
Except I’ll need to go back to Tucson for my CT scan in the middle of September. I could get scanned in Albuquerque, but it’s important to me to stick with my current oncologist and radiologist. I will stay in a hotel for my scan if the house is too torn up. I’m always stressed when I’m getting scanned, so I’ll do whatever works to make it not too miserable.
There are actually some really beautiful resorts in Tucson that are nearly empty and quite affordable in September. No one visits Tucson in September! Summertime family travel is over by then, but escape-the-winter travel hasn’t started up yet. Tucson in September is still super hot, while the rest of the country is beautiful (well, I think Tucson is beautiful in September too, but I’m biased.)
Other than the trip out to Tucson for my CT scan, we plan to be in Albuquerque this fall until the remodel is done in Tucson. Well, not done-done. Just the most invasive stuff done. After the floors and kitchen are done we can reoccupy, and then we expect to be plugging away at a variety of smaller projects for quite some time.
So anyway, while I was in Albuquerque unpacking, I was also simultaneously packing for our trip to Seattle. It’s a multi-stage trip, with a stop in Tucson, then up to Boise to see Callan and Chirstina, and then on to Seattle, then back to Boise, then Tucson, and ending in Albuquerque (then back to Tucson, then back to Albuquerque, then back to Tucson…).
I sure wish I was one of those people who can pack a couple pair of pants, 3 tops, and a toothbrush, and be on my way. Noooo. Nope, not me. I have a bag that’s labeled “Tucson and Boise” and then two more larger bags labeled “Seattle”. Seattle is going to require a certain amount of gear because we’ll be camping, kayaking, and bicycling, as well as a variety of urban activities.
Plus there’s a bag for Biska with her toys and food dishes and leashes (and Benadryl in case she tries to eat another bee). And I have a bag labeled, “office” because this is only partially a vacation. We’re still trying to work part of it. I still have a few clients (over the phone). And we’ll be overseeing the remodel. John will have some meetings to attend by phone. We are hoping he won’t have to fly to Albuquerque mid-month, but it is possible.
Plus the rest of life goes on and we need to keep up with it all. I still have to keep track of the rentals; make sure the rent comes in and the landscaper gets paid, etc. Then there’s all the utility bills at both of our houses. And I have some online volunteer activities. It’s all fine, but it can get to be a lot to juggle when my life is in disarray, even in a good way. I am exhausted and depressed.
There is a little nagging worry in the back of my brain that wonders why I’m so exhausted. John is working harder than me, doing most of the packing while also working full-time. Yes, we’re doing some packing and life is a little chaotic right now, but is that really reason to be so completely exhausted? I can’t quite shove out of my brain a concern that my cancer might be back. I really want to live life to the fullest while I can. I try not to think about that too often, but part of me is aware – because it’s true – that one of these days a routine CT scan could suddenly cause my life to tilt out of wack again. I’m trying not to think too much about my upcoming cancer scan in September. But I know it’s coming up soon.
Hopefully our trip to Seattle will be relaxing and engrossing and exactly what we need, as the remodel progresses back in Tucson. A month seems like such a long time to be gone, but it will be good to be in one spot for an entire 4 weeks in a row – something we haven’t done in awhile. When your vacation encompasses a longer period of stability than your regular life, you gotta wonder.
The other day a friend of mine in one of my zoom meetings asked me where I was, and I said, “Uh,” and I looked up and turned to look at the window before answering, “Tucson.” Because – for a second there, I couldn’t remember.
Every year we try to go to Utah around Memorial Day or soon thereafter for John’s birthday. We noticed that a weather front was forecasted to come through, right in the middle of the weekend. But we decided to go anyway. John has gotten quite busy at work and didn’t see another good time. I’ve also gotten the remodel started with a big cement pour coming up soon after we were scheduled to get home. So off we went.
Day one of our Utah trip was challenging. We were barely underway when our navigation started warning us about a double accident on the freeway between Phoenix and Flagstaff. Estimated wait times climbed as we approached Phoenix. By the time we were in Phoenix, wait times were estimated at nearly two hours and still climbing. We stopped at a park in northern Phoenix to decide what to do. There really wasn’t a good way around the accidents. But we did not want to sit on the freeway for two hours. We decided to find a café with an outdoor patio and order lunch.
By the time we finished our excellent lunch at a little Greek café, the freeway ahead was nearly clear. We had only been underway for a few miles when suddenly I had a sinking feeling, followed by panic – did I leave my purse behind?
When we left the Greek café, our hands were full; I juggled Biska on a leash in one hand, and her water dish in my other, trying not to spill the water. John had gathered up the trash for the garbage can as well as our drinks and leftovers to take back to the van. My purse had been sitting on the chair behind me. Did I leave it there?
We had eaten outside on the patio, and it wasn’t even a contained patio. It was just a few tables out on the far edge of the sidewalk. People were walking through the whole time we were eating. Surely if I left my purse it wouldn’t still be there.
John exited the freeway to get turned around, and I frantically searched for the phone number for the café. The woman on the phone sounded dubious, but suddenly she said, “I see it!”, and she nearly hung up on me in her haste to dash out and save my purse for me.
We drove back and I ran in for my purse, which she had set by the cash register. She gently admonished me, as she handed it to me, saying that even though it was a good neighborhood, she was surprised it was still there.
I was relieved and also felt foolish and frustrated. I am having much more difficulty tracking things since I had chemo two years ago. I know everyone has trouble as they get older, but for me it was very sudden.
I am also having trouble with proprioception, which is my sense of where I am relative to my surroundings. Because of that, I bump into things a lot. I’ve always been that way, in fact one of my coworkers in Santa Fe teased me for being “fond of walls” because I would misjudge and bump into corners sometimes. That was before chemotherapy. But I’m much worse now, and I am usually banged and bandaged up from minor household incidents; bruises, burns and cuts.
I recently hit not one but both of my feet on the open door of my dishwasher (which I don’t leave hanging open unless I’m actively unloading it). First I hit my left foot and a week later I hit my right foot. And the day before we left for Utah I burned my forearm while making bread for the trip. Bumbling and forgetful – lovable maybe, but decidedly frustrating too.
After we collected my forgotten purse, we continued on our way, the freeway slow but moving through the canyons heading to Flagstaff. Our only incident was an old guy in a pickup truck towing a utility trailer, suddenly decided to change lanes right into us. We couldn’t believe he didn’t see our huge van, but apparently he didn’t. John had to swerve and sound his horn. I saw the old man’s surprised look through the window as he swerved back into his own lane. I think the poor guy nearly had a heart attack. I nearly did too.
So two near misses and the day was only half through. What next?
What came next was a twisty gravel road as we headed into the mountains. John and I have been on dozens of twisty mountain roads together. I often find them nerve wracking, but on that day my nerves were already shot. First my lost purse, then our near accident with the old guy in our lane – there was too much adrenaline already circulating in my system.
One minute I was happy looking at the scenery, and the next moment my brain was inexplicably shouting at me that the road was ending at a cliff and we were driving off the edge! Before I even understood what was happening I started screaming. Poor John braked and looked at me. What in the world was wrong?
I had lost my mind, that was what was wrong. I was frantically trying to get out of the van. John was already driving quite slowly due to the nature of the road, so it only took him a second to stop. I leaped out and ran to the other side of the road – and back again – suddenly unsure of what I was afraid of. There was the road in front of us. Yes, it descended quite steeply and we hadn’t been able to see it until we crested the rise. But this was nothing new for me. I’ve been driving mountain roads my whole life.
I was embarrassed and discouraged. What is becoming of me? I’m a life coach, so I know the techniques to use for anxiety, such as breathing deeply and slowly. But this had happened far too fast for any intervention technique. I had no idea it was going to happen to me and no time to do any slow, deep breathing or anything else – at least not until I suddenly found myself standing in middle of the road. And by that time, I was fine again.
I guess it was a panic attack. For some reason, I always thought people knew when those were coming on. I thought they built up and it would be possible to intervene. But this was incredibly sudden and unexpected. The entire episode only lasted a few seconds. It was over before I had even understood what was happening, much less have any time to practice slow breathing, or make any attempt to override the irrational reaction. It just happened too fast.
I’m not sure if my chemotherapy did some damage and I am simply different now, or if I am actually continuing to get worse. In which case, I suppose I should seek medical assistance. If I’m not getting any worse, I can probably learn to live with my new, less reliable, post-chemo brain. If I am getting worse, why would that be? Is there something even scarier than cancer in my future?
I used to imagine that we could somehow just steel ourselves and be tough, and override any irrational tendencies of our minds. That was hubris. We are way more at the effect of our minds than we would ever want to admit to ourselves. If our minds aren’t working right, there’s not much we can do about it. It’s not about strength of character. This just isn’t in our control.
This is hard to describe, but there’s a thing where we look down on people for what their minds do to them. We arrogantly think highly of ourselves because we aren’t like them. But it’s so unfair because it’s not their fault.
I’m realizing on a new level that to a great extent we do not get to take pride in – or blame for – who we are.
CLEAN SCANS! NED! (No Evidence of Disease.) Whoo-hoo! I didn’t know how much I was worried until I got my results. “No evidence of recurrent or metastatic disease within the chest, abdomen, or pelvis.“
I had been previously scanning every three months, and this time I went six. And I was dubious. It was a long time not to know what might be growing inside me. Every little twinge and pull and funny little pain…
John and I are planning a house remodel and planning trips for next year and in the back of my mind, I’m wondering…next year? That’s a long time from now. Anything can happen. Cancer, pandemic…we don’t know what next year will bring.
It’ll be several years yet before I’m completely out of the woods and by that time, as my good friend reminded me, I’ll “be old anyway”. LOL!
The report does mention “mild spondylitic changes involving the imaged spine.” That’s been noted before, and I believe it means arthritis. Fine, whatever. As long as it’s not cancer.
My scan was done just after noon today and my results posted in my patient portal less than 5 hours later. I could hardly believe it. Usually it takes several days. When I got an email message saying that there was a new message in my portal I figured it was some administrative glitch, like my visa rejected the charge (I haven’t hit my deductible yet this year, so it was out-of-pocket today).
I did not expect results this fast! I was almost suspicious – like did the radiologist actually look at my scans? I did notice that the cancer center was practically empty this morning, and I wizzed through the blood draw and IV and scan and everything in record time. Maybe they’re just finally not backlogged anymore. My whole cancer journey has completely coincided with the pandemic, so who knows what normal looks like.
I recently published a post that basically says, hey, look, some people who have a serious illness with a fairly high likelihood of dying relatively soon will actually want to talk about it. Or even do a little planning around the possibility of dying, prior to being certain they’re actually terminal. And that’s not abnormal, depressive, or harmful. And it will in NO way increase their likelihood of dying soon.
I included some rather startling data about my life expectancy in that post, and I’ve had some of you express surprise that my doctors are actually giving me such clear and blunt information about my cancer. The answer is a resounding no, my doctors are not providing useful information at all. My doctors have not been candid. All the data and cancer information in my blog is the result of careful research that John and I have done. I believe the data I’m publishing is accurate, based on the reputations of the science journals where it was originally published.
Only once did I have an actual meaningfully candid conversation with a doctor. The only doctor who was remotely straightforward with me was the guy who did my first colonoscopy screening and discovered the cancer. He told me as soon as I was coming out of anesthesia that I had cancer. He didn’t wait for the pathology report and he didn’t add any caveats. He said quite directly that it definitely was cancer and that I would need surgery. He also, surprisingly, agreed that I would be better off getting my surgery in a larger city, rather than Albuquerque, when I mentioned I had the ability to get it done in the Bay Area, or Houston, or Boston. He recommended Boston.
Since then, I’ve had almost zero guidance. I was completely unprepared for the severity of the surgery, the months and months of recovery, and the permanent damage (I am lucky not to have a colostomy bag, but I will never be the same again).
Not only was I not remotely prepared for the difficulty of the surgery, I was also entirely, pathetically – almost laughably – unprepared for the effects of the chemo. It was vastly worse than I had been led to believe. Not only was I far sicker than I expected, I also was not warned of the permanent damage it would cause. I have permanent nerve damage in my hands and feet which causes pain, tingling and poor coordination. I also seem to have developed something like ADHD. I get distracted and lose track of my tasks. I drop a lot of balls, and I never used to be that way.
I don’t know why doctors are so cagy, and unwilling to give it to you straight. I gather it’s better than it used to be. I’ve heard that patients didn’t used to even be told that they had cancer. Patients didn’t want their families to know, families didn’t want the patient to know. Everybody knew and everybody pretended it wasn’t so. In my opinion, that’s nuts. It’s still that way in some places.
I can guess that one reason doctors don’t want to level with patients about the severity of treatment is they don’t want their patients to give up and refuse treatment. And for some people, that’s probably valid. However, I would have done better with my chemo treatments, and probably been able to stick with it longer, had I been more aware of what to expect.
Another reason, I’m guessing, is no one wants to give bad news, especially when it’s not for sure. It’s one thing to say, “yes, you have cancer” or “you are terminal.” But my odds are 50-50. What does that even mean? It’s almost meaningless. I might die, I might not. 50% – cancer free in 5 years. 50% – looks like I’m probably gonna die. It’s a complete toss up. It’s a complete unknown. How do you give that news? If you’re going to say, “I don’t know”, I guess you might as well not say anything at all, right?
I also get vague, sugar-coated answers from doctors – sugar coated to the extent of almost being not true. I’m not sure why I’ve had a couple of doctors give me generalized, overly optimistic odds. They’ll cheerfully name vague numbers better than 50-50, which might be true for an average of all colon cancers, but is definitely not true for those of us with lymph node involvement. Do the doctors not actually realize the devil in the details? Or are they just choosing to not mention that? I don’t know.
Advocates say you have to manage your own care, and it’s really true. It’s hard too, because a there’s a big learning curve. I knew next to nothing about cancer when I was diagnosed. There are several things I would have done differently during treatment if I had known then what I know now. But I just keep learning as much as I can as fast as I can, so I can make better decisions going forward.
Secondly, I want to thank you all for your supportive comments. You’ve sent me a couple of good, relevant articles that I’m going to pass along.
The first, sent by Laura, is a podcast about the 5 stages of grief.
We’ve all heard of the 5 stages of grief, right? Turns out it was originally the 5 stages of dying, not the 5 stages of grief. The original author of that theory was studying what people who were in the process of dying had to say about dying. The study found that people who are dying often really want to talk about dying, but the people around them, who aren’t dying, don’t tend to be comfortable with that. I guess there’s not really any big surprise there!
The second article is by Caitlin Flanagan and it made me both laugh and cry.
Her first paragraph reads, “Are you someone who enjoys the unsolicited opinions of strangers and acquaintances? If so, I can’t recommend cancer highly enough. You won’t even have the first pathology report in your hands before the advice comes pouring in. Laugh and the world laughs with you; get cancer and the world can’t shut its trap.”
Of particular concern to her was everybody’s insistence that she stay positive when she was going through a horrendous time in her life. The mandate to stay positive (and her failing attempts to do so) added enormously to her overall burden during that hugely challenging time.
Her main point is this:
“There isn’t a single bit of evidence that having a positive attitude helps heal cancer…I didn’t cause my cancer by having a bad attitude, and I wasn’t going to cure it by having a good one.“
Flanagan ends her article with a huge and transforming insight from her therapist.
“…over the years, many wonderful and generous women had come to her clinic, and some of them had died very quickly. Yikes. I had to come clean: Not only was I un-wonderful. I was also kind of a bitch.
God love her, she came through with exactly what I needed to hear: “I’ve seen some of the biggest bitches come in, and they’re still alive.”
And that, my friends, was when I had my very first positive thought. I imagined all those bitches getting healthy, and I said to myself, I think I’m going to beat this thing.“
Here’s the full article: https://www.theatlantic.com/health/archive/2021/08/caitlin-flanagan-secret-of-surviving-cancer/619844/ (If you want to read the article but encounter a paywall, let me know, I can send a “gift” article to you.)
So here’s the thing – I will not increase the likelihood that my cancer will come back by thinking or talking about the possibility of death. Nor will I increase my survival chances by trying to stay positive. I don’t have that power. And I don’t have that responsibility. And I don’t have that obligation.
I think our culture’s mandate that we all stay positive at all times, especially when we’re seriously ill, is one of the biggest roadblocks to our ability to talk about death and prepare for death. How does one think about and talk about death and simultaneously be positive? And how does one prepare for something without thinking about it and talking about it?
Since this is a heavy post with no pictures, I’m going to end by sharing a beautiful photo of Albuquerque at night, recently sent to me by an old friend of mine. I had to reduce the resolution for this blog, but hopefully it still shows up crystal clear. It’s a fantastic photo. (photo credit, Robert Hohlfelder, thank you).
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