Category: June 2020

My sister, who is the doctor I trust the most over all the other doctors in all the world, read my last post and texted me that chemo does cause fever. And she has a good description of why.

She says “It happens all the time from the body’s inflammatory response to cell death.” Yikes. Cell death. That is what chemo does. My sister is very down-to-earth and straightforward and tells it how it is.

She also said that it’s less likely to get a fever at the third month instead of the first month, but still quite possible. The other likely possibility is that this isn’t the first time I’ve had a fever. I hadn’t regularly been taking my temperature.

The reason I took my temp a couple of weeks ago was my appetite abruptly disappeared, which has NEVER happened in my entire life (except when acutely nauseous of course). It’s the bizarrest thing, to feel so negative about food for days on end, for no apparent reason. John would fix various nice things trying to get me to eat, and it was like he was handing me a piece of paper and expecting me to eat it.

When my appetite completely disappeared like that I was astounded, and my shock prompted me to take my temperature. Because like, what in the world was going on, right? I no longer want food. Was the world coming to an end? But I could have had a fever for the entire last three months, for all I know. I never thought to check.

To send Kristina a comment, email turning51bykristina@gmail.com

That’s what I’ve been thinking for a couple of weeks now. I’ll feel better tomorrow. Or the next day. Any day now I’ll rebound from the effects of the chemo – which I last took back on June 10. But instead of getting better during this break, I’ve mostly gotten worse.

My GI system’s been a mess – undoing progress I’d made since surgery. I’ve had migraines day after day. I’ve had a fever for a week and a half. I haven’t had an appetite in a week and a half either. I sleep a lot. I have nightmares.

At one point they had me go in to the cancer center to get bloodwork done to make sure I didn’t have neutropenia, which is low white blood cells. If I had neutropenia, I would have been admitted to the hospital, given antibiotics and something to boost bone marrow production. My counts were low, but not too low. So they cleared me to start the next round of chemo.

And I was like, what? No, seriously? My options are either being admitted to the hospital or cleared for more chemo? That seems to be the protocol – no balance. No adjustment, no modulation. They just drive it as hard as possible until you’re in failure mode, then go to heroic great lengths to make sure the patient doesn’t die of the cure.

I was still so obviously sick – I figured I’d wait a day or two until I was at least a little recovered first before starting the next round of chemo. That day or two turned to three or four days and then a week. My “recovery week” has stretched to two and a half weeks now, and I’m still not significantly better.

Am I done with chemo?

It’s been 3 months, and there seems to be a difference of opinion about whether I need 3 or 6 months. We would love to get a second opinion because we don’t have a lot of faith in our doctor in Albuquerque. She’s not very experienced and isn’t even a specialist in colon cancer. She seems to be just following the protocol. I’d like to be able to consult with someone who knows enough and is experienced enough to make some judgment calls, and do some troubleshooting and customizing.

Another doctor, a colon cancer specialist at a prestigious center in Seattle, is the cousin of a coworker of John’s, and she has emailed us this:

“…most folks have moved to 3 mo of chemotherapy for low-risk (T3N1) stage 3 colon cancer. The difference in DFS is only 1-2% for staying 6 mo and may be less for an individual patient. On the limited info that you have given me, I don’t see the rationale to necessitate 6 mo (though that was the standard up until ~2 years ago).“

This specialist was initially willing to give us an appointment and a second opinion, but it her department has a policy limiting her ability to offer telemedicine to states that aren’t adjacent to Washington State. It’s not about insurance – our insurance already said they’d pay (and we’d it pay ourselves if we needed to). It’s an internal policy. So she can’t do a records review or provide an official second opinion, but she has very kindly offered to call us for an informal chat. We are looking forward to that on Tuesday. We also speak again to my current doctor tomorrow.

Meanwhile, here is a very good and very relevant article, in case any of you like to read some more technical information. (For reference, my diagnosis was stage 3, T3N1.)

What Is the Optimal Duration of Adjuvant Therapy in Colon Cancer? 

If you don’t feel like reading that article, I don’t blame you. Here’s a picture of my orchids in the kitchen window at night. These are all second or third blooms, from orchids I bought for my office last year and the year before, when I was working in Santa Fe. There was a Trader Joe’s across from where I worked, so I would walk across the street and buy an orchid when I was having a bad day. The orchids are doing very well this year.

To send Kristina a comment, email turning51bykristina@gmail.com

Last week was the second week of my most recent chemo round. I always do poorly on the second week. I’m now in the third week, which is a recovery week (no chemo this week).

I have two primary side effects from the chemo. One I’ve already talked about – it’s called hand-foot syndrome, and the nerves and cells in the lower layers of skin in the palms of my hands and feet are being damaged. This is causing stiffening of the skin, tingling, burning, peeling, and swelling. I don’t mind dealing with it as a temporary issue, but sometimes the damage can be permanent. So we are monitoring that closely.

The other main issue I’m having is psychological. We didn’t expect this, but it turns out it is a known side effect of chemotherapy.

One of the primary symptoms is I’m having trouble tracking anything. I find myself sitting and staring. I don’t know what I’m supposed to be doing. Eventually I’ll notice that I quit halfway through loading my laundry into the dryer from the washer. Or I’ll see that I didn’t finish what I was eating and it’s still sitting on the table.

I’m failing to reply to emails and texts. I’m not remembering to track all our paperwork (I run a small business and we have rentals, so our billing/banking/scheduling system is complicated and time consuming). Not to mention all the health insurance and health care related headaches due to the cancer.

I have taken to setting alarms on my phone for everything – an alarm to make sure I feed the dogs, and alarm to make sure I’m ready to walk when Darren takes his mid-morning break at 10:00, an alarm for each of my zoom and phone meetings, etc. My phone is forever sitting in some strange place, cheerfully alarming to itself about whatever I’ve forgotten about. When it came time for lunch yesterday and I hadn’t even showered yet, I realized I might have to set an alarm to make sure I shower!

My second big issue is anxiety. I’ve never been very trusting of the universe. Life has never seemed very predictable or dependable in the past. But now I’m really struggling to envision a positive future for myself. COVID is doing that to all of us, but cancer adds yet another dimension to my tendency to not trust the future.

I have not written very much about the fact that we are selling two of our rentals. Normally a real estate transaction (not to mention two at the same time) would be a fairly big deal for us, but life is so crazy at the moment that it just seems tangental, something going on in the background – like trying to get our taxes done.

And yet, it’s chugging along. The Santa Fe rental is sold! We signed our closing papers on Friday and it recorded Monday. I expected the signing appointment to be a very boring little blip in an otherwise difficult week. It turned out to be harder than I expected, and I’m blaming the chemo.

I knew Friday was going to be a bad chemo-side-effect day, but that was our closing date and signing paperwork isn’t that hard. They told us we could have a curbside signing in our own car. It sounded workable. I can do this! Right? How hard could it be? Sign a few papers in our car and we’re done.

We parked near the entrance, called to let them know we were there, rolled down our windows, and waited in the hot car with our masks on. After 15 minutes, we called them again, and they said someone would be right out.

Eventually a woman came rushing out and ran right up to my car window, loudly apologizing for having left her mask in her office. I shrank back into my seat, feeling trapped. I couldn’t take a couple steps back myself – I was sitting in the car. I felt hemmed in. I tried to request that she go back and get her mask, but she was talking so much, so loudly that she didn’t hear me, muffled behind my own mask. I tried to explain that I had cancer and was immunocompromised, but all that did was elicit further animated apologies. I couldn’t figure why she wasn’t backing off, or better yet, turning around and going back inside to get her mask. So I asked her to please walk around to the other side of the car.

The moment she stepped away from my car door, I leaped out of the car. I stood in the parking lot for a moment, watching her talk into John’s window, loudly. That wasn’t an improvement – we don’t want him sick either!

I’m not sure if I was mad or scared or what – it felt more like confusion and overwhelm. All I know is what I did next. I took off walking down the sidewalk. Without my phone, without explanation, without a destination. I just left. I remember vaguely thinking that if she can make us wait 20 minutes in a hot car, I can go on a 5 minute walk to clear my head.

John said that after I left she was quite apologetic. Now I feel bad for making her feel bad. That wasn’t my intent. I just suddenly needed out of there.

It’s been very challenging for John and I to watch my personality change. It’s not like I’m a completely different person – after all, as I mentioned in my last post, I panicked in a huge crowd 5 years ago. But Friday’s event was nothing compared to that situation. The signing on Friday only involved one friendly person, bringing us paperwork without a mask. I waaaaay over-reacted. Can I no longer handle even a slight disruption in a boring day? It’s so strange to no longer be the person I think I am.

To send Kristina a comment, email turning51bykristina@gmail.com

I’ve generally avoided news and politics, trying to keep this a personal blog. You already have your own sources for national and world news. Also my motto for this blog is, “The lighter side of life – staying in touch with friends and family by celebrating the ordinary.”

But then I got cancer, and although it has its lighter moments, cancer isn’t generally a light subject. And I couldn’t imagine trying to write an authentic blog without including the cancer. And then there’s the coronavirus, which is not just a news item; it is permeating my life the same as it’s permeating everyone’s life.

Now there’s the protests. I know you have your own news sources, but here is an excerpt from my local newsletter this morning, which I always read while feeding the dogs. I stand over them to make sure they don’t steal each other’s food, one eye on my newsletter on my phone, the other eye watching out for dogs straying from their appointed food bowls.

“What began as a peaceful protest last night over a statue of Spanish conquistador Juan de Oñate at the Albuquerque Museum ended with one protester shot. The shooting occurred amid conflict between protesters and armed civilians known as the New Mexico Civil Guard, which escalated after protesters initiated attempts to topple the statue. The Albuquerque protest echoed actions across the country to remove various confederate monuments and other tributes to slave owners and colonialist figures. Oñate, a colonial governor during New Mexico’s 16th-century, murdered 800 members of Acoma Pueblo, cut off the foot of at least two dozen captives and was eventually exiled from the state for his violence…Albuquerque Police reported late last night the victim was in critical but stable condition.”

I’m not posting that just because it’s news. It hit the national news and you probably already saw it anyway. I’m posting that because I use this blog to communicate how I’m doing. And I’m not doing very well. I’m fairly upset right now.

I haven’t been going to the protests. I feel guilty about it, and my handy explanation is I’m immunocompromised from the chemo. But there’s also another reason. I am afraid of crowds. I can barely handle friendly crowds. I can’t imagine dealing with crowds with guys with guns.

In the past my crowd aversion hasn’t been a serious affliction. For example, I enjoy concerts – but only if they are outdoors or we have assigned seats. I grit my teeth and deal with Thanksgiving crowds in the grocery store. I wait at crowded gates in airports, unhappy but managing. I can’t stand flying, but I do it anyway.

The only time I can remember just sort of completely losing it, was in a fairly extreme crowd situation. Five years ago, in June of 2015, Laura and I went to the San Francisco Pride Parade. This was immediately after the Supreme Court had ruled that the constitution guarantees a right to same-sex marriage. The mood was intense, celebratory, and the crowds were huge.

We took the BART into downtown. At the time we lived on the far edge of the Bay Area, so it was a long trip. The BART was completely overrun with people trying to get to the parade.

There are no bathrooms on the train, and many of the stations don’t have bathrooms either (the BART system is gross, disgusting and dangerous in my opinion, but I didn’t want to drive and parking would have been impossible). Our trip started out with long lines for the restroom, at one of the few stations that have them, with many women (including Laura and I), giving up on ever making it into the women’s and storming the nearly-empty men’s room instead (talk about disgustingly grimy, ugh).

We were most of the way through the train trip when it stopped unexpectedly in the tunnels (it goes under the bay, which I find to be psychologically difficult). Going under the bay is hard enough, but to be stopped under there is even harder, and we had no way to know how long we’d be trapped under the bay on a crowded train.

The train eventually started moving again and we reached our station. As we walked up the stairs and burst out onto the street level, we were suddenly amongst an insane number of people, bright colors, and noise. Thousands of people were dressed up in crazy costumes waving banners and reveling.

(If you’re sort of panicking right now, looking at all these people without masks or distancing, remember, this was from 5 years ago, before COVID, back when we all breathed each other’s breath and put our hands all over everything that everyone else was touching too – ewww, yuck.)

Some marchers were family oriented.

Others were hardly dressed.

I backed off to the edge of the crowds, next to a low crowd barrier, and adjusted my backpack, putting away my sweater and getting out my water bottle.

Soon after, I discovered that I had lost my phone. Most of us have done that at some point, but it’s always a freak-out moment when it happens. I carry my credit card and my driver’s license in my phone case, so all that was gone. Completely gone. There were thousands and thousands of people there, and I had no idea why I no longer had my phone and no clue as to what to do next. I ran back to look for it, but of course I didn’t find it.

It’s hard to believe, but I got my phone back after about half an hour. I had dropped it on the other side of the crowd barrier into a patio seating area belonging to a restaurant that had not yet opened for the day. My lost phone couldn’t be seen from the street. A restaurant worker found it, and answered it when Laura called it. It was a huge relief to get my phone back, but by that time my nerves were shot.

I was trying to stay on the edges of the crowds, but Laura wanted a glimpse of the plaza. And it was hard to gauge where the crowd barriers were and exactly where the “edges” were. At one point we accidentally got funneled between two chain link fences which narrowed down into a chute, forcing the crowd together, and there was no escape. We were smashed together, not just an occasional brush of an elbow, but rather a mass of people all shoved up tightly against each other, and there was no option other to be carried along with the crowd. As I was pressed on all sides by strangers, I just focused on keeping my breathing low and slow and not fighting the situation.

I made it through the choke point, but when we were free to move again, I simply took off running. Laura had to chase me down. She found a little outdoor deli a couple blocks from the crowds and sat me down and made me eat something. It was like a different world – an empty plaza only a block or two from the madness.

We sat there for awhile before I could consider getting on the BART to go home.

This is embarrassing to write about it, but I think we need to be more open about these kinds of things in our lives. I do not have any known mental illnesses. I probably have PTSD from some difficulties in my childhood, which aren’t related to crowds, but the psyche is a strange thing. I also probably have a touch of autism, and people on the spectrum can get overwhelmed sometimes. Regardless of what I may or may not have and why – my point is that sometimes fairly normal, professional, productive, stable people find themselves in a situation that’s too much for them.

This all leads up to what I was going to say about chemo symptoms and Friday. Actually, this post is getting overly long and it’s dinner time. I will write about Friday in my next post. Stay tuned…

To send Kristina a comment, email turning51bykristina@gmail.com

I told some of you at one of my Zoom meetings over the weekend that I’d be starting a new kind of chemo this week. Turns out I’m not. I’m still on the same stuff I’ve been on, although at a 2/3 dose.

So far I’m doing ok. My hands and feet are swollen and tingling, but I can still walk around the neighborhood. I’m not sure how much of the swelling is due to the meds and how much is just due to the heat, lol. It’s 100 degrees hot! It doesn’t look like I’m going to get a swimming pool this year, but next year, just wait. I’m going to figure something out.

We went bicycling on Wednesday! I’m slowly recovering from the surgery. I recently emailed my sister asking about my surgery recovery. I feel ok but there’s still a fair amount of discomfort. And it’s been three months! I asked her if that’s normal and she said yes. She said it was major surgery and it’ll take a year. A year!

John had worked some overtime recently, so we took Wednesday morning off and went biking on the Bosque trail. The Bosque trail is a wonderful, long, flat multi-use paved trail near the river. You can’t quite see the river from the trail, but the trail is tree-lined and you can see an irrigation arroyo that parallels the river and usually (always?) has water in it. On the opposite side of the arroyo are the backyards of some very expensive homes, with irrigation rights, so their large yards are landscaped beautifully and are probably the greenest section of all of New Mexico.

I was super excited to be able to bicycle for 45 minutes. A 45-minute bike ride on flat terrain is not very far compared to what the previous-me could do, but it’s very exciting for the current-me. And my mask didn’t bother me at all. I suppose it’s because it’s a homemade mask and not tight. The breeze from the bike’s movement kept plenty of air circulating. That probably means the mask wasn’t protecting me from anything, but hopefully it was keeping the worst of my own aerosols contained.

I love that trail and wish it wasn’t on the exact opposite side of the city from us! A year or two ago, before we bought this house, I looked for a house near that trail. But prices are a lot higher over there than where we ended up, and at the time we thought John would be commuting. So we bought this house near his company to minimize his commute. And now he works from home and only goes into work about once a month. So we totally don’t need to be here after all. Ah, hindsight.

I have been feeling kind of bummed about my neighborhood lately (as a few of you know). But then something very nice happened yesterday. John and I were out for our usual walk, and we were walking past a house that I like. The balcony is full of colorful talavera pots, and the front yard is an untamed riot of desert plants. There’s just something about the place that feels homey.

The owner was checking her mail as we walked by and she told us to smell the blossoms on her mimosa tree. And they were so sweet. It’s just a little thing. But we’ve had a couple of neighbors move in right near us recently who aren’t the sort of people who would even grow mimosa trees, much less invite passersby to stop and smell them.

So today I dropped a little greeting card into her mailbox. John said I was crazy. I don’t even know her. He also said it’s illegal to put things in people’s mailboxes. It’s a card! Isn’t that what a mailbox is for?

Here’s what a mimosa blossom looks like. I didn’t take this picture. It’s from the web. I’m getting lazy!

Due to the hand-foot thing I have from the chemo, my palms are smooth so I can’t unlock my phone with my fingerprints. Plus, I can’t see the phone screen through my sunglasses, and I can’t push them onto my head because of my sunhat, and then there’s the mask right in the way of everything. I get tired of trying to mess with my glasses, my mask, my sunhat and my phone, just for a picture while we’re out for a walk! I didn’t take pictures of the Bosque trail either, even though it’s nice and green at the moment.

However, I did get my phone out for a photo of this roadrunner Darren and I saw on a recent walk. I think it’s got a lizard in it’s beak.

I’ve seen that roadrunner at that same house before. He must live there 🙂

Roadrunners are hard to photograph, lol, they don’t stand still very long!

There’s a lot of things in life I miss right now. And I feel bad I can’t join the peaceful protesters. But I do enjoy our daily neighborhood walks.

To send Kristina a comment, email turning51bykristina@gmail.com