The lighter side of life – staying in touch with friends and family by celebrating the ordinary.
(Warning: you may find this to be TMI – it’s not really possible to talk about colon cancer otherwise. Also if you missed my first cancer post, and you’re like, “WHAT? CANCER?” The first post is here)
We had our initial consultation with the surgeon this morning, but we still don’t know whether it’s colon or rectal cancer. It matters because the treatment protocol is different.
The protocol for rectal cancer is much worse, because the cancerous lesion can’t as easily just be snipped out. Rectal cancer protocol can involve many weeks of chemo & radiation, then several weeks of rest, then surgery, then several more weeks of rest, then more chemo & radiation. The whole thing can take almost a year, and I’d have a temporary colostomy bag for about 6 months. This all sounds terrible.
On the other hand, if it’s colon cancer, I could simply have surgery soon (in a couple of weeks) and then probably a round of chemo afterwards (depending on the pathology report). No colostomy bag, no radiation. I’d be done in two months.
It all depends on how far up the intestine the lesion is located. This morning my doctor attempted to make a clear determination of exactly where it is. If the cancerous lesion is 20 cm or more up in there, it’s considered colon cancer. If it’s less than 10 cm up, it’s rectal. Between 10 cm and 20 cm is borderline.
The doctor who did the original colonoscopy in Albuquerque called it “at approximately 16 cm”. He was using a flexible scope, and it’s hard to measure with a flexible scope. So this morning my doctor in Boston put a rigid scope up my butt, trying to get a look at the lesion and get a more accurate measurement of how far up there it is.
Turns out I have what he called a “tortuous” colon, meaning it curves around a lot. Lots of twisting and turning. (Initially it sounded to me like he was saying “torturous”, which, although the procedure did hurt, wasn’t all THAT bad.) Because of the twists and turns, he couldn’t get his rigid scope far enough up there to see the lesion. He did get far enough to see the first set of “tattoos”, which were at about 10-12 cm.
I’m like, “tattoos”? At first I though he was joking. But apparently the GI doctors who do colonoscopies leave marks in the colon when they see something suspicious or cancerous, to guide the surgeons. The marks are called tattoos. So yeah! I got my first tattoo a week and a half ago, and I didn’t even know it.
My doctor in Boston (actually, he’s in South Shore, which is just south of Boston), is tentatively recommending we treat it as colon cancer, not rectal cancer. He is also recommending that I switch to a new doctor, a colleague of his in downtown Boston, who works at a larger hospital.
He’s recommending his colleague for several reasons. First, my current doctor in South Shore is booked until mid-March for surgery, and his colleague could get me in faster. Secondly, the bigger hospital in downtown has fancier equipment, including a robotic surgery aid that allows for a smaller incision. Thirdly, the new doctor does more of these kinds of procedures, and my current doctor wants a second opinion because of the borderline location of my lesion.
The new doctor in downtown Boston will give us a second opinion regarding whether to treat it as rectal cancer or colon cancer, and he’s the doctor who will probably do the surgery. My current doctor said he would contact his colleague today, and I should hear from one or the other of them by Monday.
So far everyone we’ve encountered in Boston has been very nice. Except when driving. Bostonians get behind the wheel and instantly metamorphose into insane people. But in person, they are quite friendly and they talk a lot, a mile a minute, leaving me standing mute, dumbfounded, staring at them like I’m an idiot.
One of the first nurses I met – after a few minutes of one-sided conversation, gave me a funny look and said, “You’re not from around here, are you?” And then without waiting for a reply, gave me a rapid-fire rundown of everywhere she and her entire family has ever lived or visited.
I am familiar with fast talking Californians. But Californians don’t say so much at once. Here’s my take on west coast vs New Mexican vs east coast speech patterns:
West Coast: Blah. Blah. Blah.
New Mexican: Blaaah…blaaah…Spanish-blaaah…blaaah.
East Coast: Blah!Blah!!Blah!Blah!Blah!!!Blah!Blah!Blah!!Blah!Blah!Blah!
And then there’s the weather. I overheard John call it “sleet with accumulating slush”. The locals call it “wintery mix”, as if it’s a potpourri scent.
We’re working to set up an apartment in Emily’s basement. We’ve ventured out several times to discount stores, and every day we also get several Amazon packages. Today Amazon brought us hardware to put up doors across the entryway to the den, a shower bench, a portable desktop file to keep our paperwork in order, and coasters.
You’re wondering why coasters. I have cancer and I’m ordering coasters. The story is, we bought a small wooden table at IKEA, which we’re using as both a desk and a dining room table. It’s a cute table and we don’t want to mar it with coffee rings. Hence, coasters.
Yesterday I ordered a pretty talavera platter – for absolutely no reason at all other than it was 50% off and it looked New Mexican and I’m homesick.
Then today, after I ordered this platter, I realized my sister already had the matching bowl, sitting out in her living room! I must have seen it earlier, and my subconscious must of remembered it when I saw the platter online. So now she has a matching set!
This is the thing with cancer – life is still fun and funny, and life goes on. In between medical procedures there’s all the rest of it. Ordering pancake mix and figuring out how to use the thermostat on the new space heater.
John found a jar of “green chile enchilada sauce” in the local grocery store, read the ingredients and realized it was tomatillo sauce – not a single green chile in it. We also like tomatillos, but they aren’t green chiles.
Amazon’s Whole Foods Market Free 2-hour delivery is my new favorite grocery store, where I actually found real Hatch green chile in a glass jar (instead of the mild dark green bits in a tin can, found up high on a remote shelf in most US grocery stores).
I miss zipping around the wide, empty, bright dry roads of Albuquerque in my old Mini Cooper, heading down to my local, affordable Sprouts Market in Albuquerque. But every day we’re here, we get more settled.
It turns out my tea kettle, that I was laughing at myself for bringing with me all the way from Albuquerque, wasn’t such a bad idea after all. I’m using it every day. Although it’s just a tiny blip in the avalanche of things we are buying. Emily has a partial kitchenette in the basement laundry room next to the large den she’s also set aside for our use. Getting it all set up has been fun and a lot of work.
I’ll post more about transforming her basement soon.
I have colon cancer or rectal cancer. We’re not sure yet which – we should find that out tomorrow. It’s one or the other. The lesion is definitely cancerous – it’s really a question of exactly where it’s located. It’s right on the border between colon and rectal. Colon cancer would be better than rectal because the surgery is easier.
First of all, my apologies to friends and family who are hearing this now, from my blog, instead of a personal call from me. I can imagine it’s a bit of a shock to find out online, but this sort of news is always unnerving, regardless of how you find out.
Secondly, I’m sure you’re wanting to know – how bad is it? We’re not sure yet. Yesterday we found out that it’s not stage 4, which of course is a relief (not that I ever thought it was that bad, but still). On the other hand, it appears likely to be beyond stage 1.
The cancer discovery came slowly – although it felt completely sudden and unexpected when it came. Last fall I got routine blood work results that showed slightly low white blood cell count. It was so slight that it could be normal for me. Or it could indicate I had been fighting off a cold. We tested again a couple months later and found the same slightly low count.
My primary care doctor referred me to hematology. The hematologist didn’t think there was likely anything wrong, and figured my primary care doctor was just being careful. Nevertheless, she considered what I knew of my family’s medical history and decided to look for lupus. That’s what I always figured I’d get someday; lupus or MS or something similar, because that’s what we get in our family (as far as I knew).
It turns out that there is colon cancer in the family after all, but it is a branch of the family that was separated from ours by a divorce an entire generation before I was even born. This was back in the days before ex’s remain close friends and co-parent. I did not know this side of the family and knew nothing of their medical history. Plus, I’ve never been remotely interested in genealogy. (I consider the Tolkien and Harry Potter-style emphasis on special lineage to be racist and unhelpful for society. But that’s a different topic.)
Even though we were looking for lupus, I also figured I’d go ahead and do my routine cancer screenings, mainly so I could say, yeah, I did them. I had only done a mammogram once, some years ago, and I had never done a colonoscopy. They say to do the colonoscopy at age 50, but obviously that’s just a nice round number, nothing magic about exactly that age. So I’d been blowing it off for 3 years.
I figured now is as good of a time as ever. We were looking into the low white blood cell count anyway. And it was a logical new years resolution for January 2020. And I finally had some time to catch up with medical care, after a rather crazy past several years of moves and job changes.
I scheduled the colonoscopy and the mammogram for immediately after my vacation with Darren. I’m very glad I waited that extra week. I’ll blog another time about our trip, but Darren and I spent a very nice, low-key, relaxing week together in Tucson, for Darren’s 30th birthday.
Then on Monday morning as soon as I was back from Tucson, I went in for my colonoscopy. By the way, the prep for that isn’t bad. I thought it would be awful, but it’s not. The procedure isn’t bad either, although they do put you under for it. The whole process wasn’t a big deal at all. Definitely not worth procrastinating 3 years over!
Shortly after the colonoscopy, when John and I were sitting in the exit waiting room expecting to be released, the GI doctor came over to talk with us. He sat down and showed us some pictures of my gut and told us that I had colon cancer. He was very kind about it, but not hesitant. I remember thinking that it must be bad if he was sure enough about it to make the diagnosis before we even had the pathology report.
The GI doctor started talking about treatment options and said that I would definitely need surgery and possibly also chemo and/or radiation. He hesitantly explained that there were a few good specialists in Albuquerque, but not very many…(pause). It seemed like he was fishing for whether we might have other options. We told him our big city options were Boston, Houston and the San Francisco Bay Area. He suggested Boston or Houston.
As soon as we got to the car, I texted Emily (my sister, who is an ER doctor in Boston.) She said, “I’d come to Boston instead of Houston,” and then, “There is absolutely no issue for you staying with me as long as you need…” So just like that, without any real deliberation and within a couple hours of a routine colonoscopy, we were scrambling to figure out the logistics of getting to Boston as soon as possible, for an unknown length of time. That was on Monday, January 27.
I called the hospital complex that Emily recommended, but encountered a series of misdirections, wrong numbers and voicemails. So on Tuesday Emily reached out directly to a surgeon she knows, and the surgeon called us that same night. He said he wouldn’t know much until I got a CT scan, but he was estimating 4-6 months of treatment. He said he would see us for our initial consultation in a week and a half, Friday, February 7, and meanwhile I should get the CT scan done earlier that week.
The next few days were spent arranging for the trip and trying to get set up appointments with the hospitals. There’s 3 associated hospitals, all of which I need to interact with (I was having trouble keeping them straight), and all of them needed to get me into their systems, get my insurance information, etc. As expected, there was confusion. I ended up with two records for one hospital (one with my name misspelled), no record for another hospital, mass confusion around my Albuquerque address, etc.
On Tuesday I insisted on showing up for my previously scheduled haircut. I figured it was probably my last chance for awhile. My new hairdresser, who did such a fast but good job in November, was out on maternity leave. Her substitute took a long time and gave me an unremarkable boy’s cut. I didn’t worry about it, wondering if I would just lose it all with chemo anyway.
On Wednesday, January 29 we got the pathology report officially confirming the cancer. But we hardly noticed – we were already in motion preparing for the trip. I had no idea what to pack and my brain was overloaded. John and I both were going around in a daze.
I put comfortable warm clothes in my big suitcase, and a random assortment of personal items into my smaller suitcase. I had no idea what to bring. I packed my vitamins and lotion and some electronics. And a teapot. Seriously, I flew an electric teapot to Boston. Apparently anticipating a tea party.
On Thursday before we left I had my routine mammogram, which had already been scheduled before we had any suspicion that I had cancer.
On Friday, January 31, we loaded the dogs and our luggage into our van and drove to Houston, because my mother-in-law, Monica, had generously agreed to care for our dogs.
We had driven the entire way from Albuquerque to Houston on Friday, leaving us Saturday to hang out and rest in Houston before our Sunday flight to Boston. To distract ourselves from everything, we went to an outlet mall and I bought a couple of pairs of warm pants for Boston, which we somehow managed to jam into the luggage with everything else.
Also on Saturday it dawned on me that I had not heard from any of my family – other than our kids and Emily, with whom I was in daily contact. But not a single peep from my parents or brothers. I knew Emily had notified them (in fact, I knew our mom and dad were at her house when she got my text on Monday). I reached out to my family on Saturday and discovered they were all apparently respectfully waiting for some sort of official announcement directly from me. Ooops.
(Friends and family should not hesitate to contact me – I want to stay connected.)
On Sunday, John and I left the dogs and the van with Monica in Houston and we flew to Boston.
I have no photos yet, to share of our new and unexpected trip (unless you want to see colonoscopy images), but here is what I wrote on Friday while we were driving the dogs down to Houston:
Surprised that I seem to be sleeping ok, for the most part.
An odd thing – I am no longer obsessing about wanting a beautiful backyard swimming pool. I am now obsessing about the idea of a ponderosa pine forest, with lichen on granite boulders and wildflowers growing up in the mats of pine needles. I don’t know why the abrupt switch. Perhaps the pool represents my hoped-for future, which is now hard to contemplate, and the pine forest represents the best parts my past – hiking with my kids, and with friends, and John.
Mostly I’ve been busy trying to get ready to leave for an unknown length of time. When I slow down, I cry.
The grief started with the disruption of my plans to go to California to hang out in the sun with Tracey and then go up with her to see Laura. Now that a few days have gone by, I’m realizing more what it’s going to mean to be in Boston for so long. I’m going to miss all my friends. I was thinking this morning about wanting to let them all know, and how the best way to do that would be.
I am sad to leave my house. Nothing like a forced absence to help appreciate something. It’s not so much the house itself, which is unremarkable and we haven’t been there that long to create memories. What I’ll miss is all my things, organized where I can find them. My little blue and white dishes Laura bought for me in Japan. My sweaters all stacked in my new cabinet, part of our bedroom set handmade in Taos, that we had bought for the Placitas house, before abandoning that project.
I will miss my new hot tub and my new gas fireplace. And all my orchids lined up on the window sill. As the weather warms, I’ll miss all my comfortable outdoor furniture and our hammocks.
Now that I know I have cancer, I am more aware of my various aches and pains. I’ve never paid much attention to aches. I have always been one of those people who have unexplained complaints. Western medicine isn’t very good with vague aches and tiredness. When I go in complaining about miscellaneous random discomfort, they try not to roll their eyes, mark it down as migraine related, and send me on my way. So I don’t go in about that stuff anymore. I’ve learned there’s no point. I definitely should have done the colonoscopy sooner though. Obviously.“
On the way to the airport in Houston on Sunday, our Uber driver asked what was taking us to Boston. We tried to tell him an upbeat story about Emily having a brand new baby (which is absolutely true, and makes it even more amazing that she’d let us move in with her). However, I was sitting in the back seat of the Uber intermittently crying because we had just left my dogs behind with Monica. So our happy story about Emily’s new baby was a bit incongruent with our mood.
Throughout the past week and a half, I am surprised how little I seem to be worried about the cancer itself. Instead, I am upset about the little things that don’t ultimately matter. The vacations that have to be delayed, the inevitable discomfort of travel, of staying with relatives, of being away from home.
Meanwhile, while I am focused on the daily details of getting moved and settled in Boston, my family is focused on the cancer itself, and my prognosis and treatment. John has spent hours googling all the new cancer terminology we are encountering. I have not googled a single cancer-related thing. All I’ve been googling is things like where to buy tortillas and green chiles in the far suburbs of Boston.