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.
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…
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.
Several of you have been asking how I’m doing with the chemo side effects. Thanks for asking, I appreciate the concern. I’ve completed my third round of chemo (sort of). As in the past, I did not manage a full dose for the second week. I made it 6 days at full dose, took two days off, started gabapentin to help with the side effects, took 2/3 dose of chemo for three more days, and then went back off the chemo on Friday (2 days early). So all I managed during the second week was a total of 3 days at 2/3 dose.
The primary issue is my hands and feet, which tingle and burn. They are swollen and the skin of my soles and palms has become thick, stiff, and smooth. In addition to being painful, I have lost some function as well. For example, on bad days I have trouble with any object manipulation that requires pressure, particularly pressure against anything hard and rough. That means toothpaste caps, garden hose attachments, even a lamp switch that has a serrated edge is difficult.
Lifting heavy things is difficult too, not because I don’t have the muscles but because the weight of the object puts too much pressure against the palms of my hands (trying to grip iron frying pans for example).
I’ve been off the chemo since Friday and it’s now Tuesday, so I am somewhat improved. I’m going on neighborhood walks now, and I can do much more with my hands. Now it’s just a matter of annoyance or inconvenience. For example, my computer and phone both use touch ID, but my fingerprint doesn’t work anymore because my skin has gotten tough and smooth. So I have to key in my password every time.
I’m expecting to improve through the week, and start chemo back up again this coming Monday. I’m going to start at 2/3 dose and see how long I can go. Based on recent experience, I’m guessing I’ll manage one week at 2/3 dose.
On a more cheerful note, we took the van camping over the long weekend, even though I wasn’t feeling well. It’s not any harder to sit on a camp chair under the pine trees than sit on a chair at home. 🙂 And the van has a bed and everything, so I really was just as comfortable as being at home, and it was so nice to be away from home. John did all the packing and unpacking and all the cooking, so I didn’t have to do anything. He’s very generous and helpful that way.
I’ll write about the trip and post more pictures soon.
I’m one week into my third chemo round of two weeks on, one week off. I’m actually feeling pretty good. Unfortunately, I’m showing signs of some fairly concerning side effects. One of the biggest common side effects from the kind of chemo I’m taking is something called hand-foot syndrome.
When my doctor first warned me about it, it didn’t sound all that serious. The skin on the palms of my hands and soles of my feet would thicken and crack, maybe blister and peel. She recommended lots of lotion. Ok, fine. A little bit gross but not really a big deal. But what I didn’t initially understand (was not told, but later figured out) is that this syndrome can cause permanent nerve damage; permanent tingling, burning and pain, that can interfere with walking and in particular interfere with higher impact activities like hiking and jogging.
If you ask me my goals for my life, assuming I get out of all this alive, among my top goals is hiking. I want to swim, hike, jog, bike, hang out with my friends, and live closer to my kids. That’s all I want in life. Sorry, no grand plans to save the world. I just want to be walking through the woods with people I care about.
The tingling/burning in my hands and feet got so bad on Saturday night that I didn’t sleep well. On Sunday we called the nurses line and the nurse on duty told us to back off on the chemo a bit, and to start taking gabapentin. Well, I know of gabapentin as a painkiller. And I’m not interested in masking the current pain symptoms; I’m interested in making sure I can hike when I’m done with all this. The nurse said the gabapentin isn’t just a painkiller; it can actually decrease the potential for nerve damage.
I was dubious, but I researched it and it looks like there’s a slight bit of evidence that gabapentin might help regenerate nerves in some situations, maybe. My conclusion of “maybe” was confirmed by my sister who said, “While its primary purpose is nerve pain treatment, there was one study (not very large and not very well done) that did suggest it had some actual preventative capacity when it came to overall health of nerve conduction. Possibly it could be helpful in preventing any long-term sequelae…it does have a lot of side effects…if you can tolerate a low dose, it shouldn’t be harmful, maybe helpful. Probably worth a try.”
Gabapentin is also an anticonvulsant used for epilepsy. It’s a serious drug with a long and scary list of side effects. I often don’t react well to drugs. I’ll start on low dose and see how it goes.
I’m taking a short break from the chemo Sunday and today. We’re getting the gabapentin today, and I hope to start the chemo back up tomorrow at a 2/3 dose. I will try to complete the rest of the week of chemo if the nerves in my hands and feet calm down. I’ve had some tingly pain off and on for a few weeks, but it’s been constant and more severe since Saturday.
When I first started chemo, I didn’t realize it would be an exercise in “how much can I tolerate?” I thought I would take my rounds of chemo, feel sick, and deal with it. I imagined a lot of puking, which, while not fun, is something I can handle. Instead it’s this big guessing game, trying not to end up with permanent damage, with my health providers not really knowing any better than I do how much chemo I should be taking and for how long.
I’ve really been missing being out in the woods. I’ve always loved pine trees in the summer time. We’re lucky to have two big pines in our own yard. John put up our camping hammock for me, so I could pretend I was camping right here in my backyard!
The pines have been making an incredible amount of pollen. Last week whenever the wind gusted, you could see the pollen coming off the trees in a cloud. It looked like smoke! It landed everywhere, and coated our entire backyard.
This is pollen all over my outdoor coffee table.
It’s hard to tell in the photo, but the pollen is a light greenish-yellowish color. It reminded me of living in Washington state, where the same thing happened, except in Washington the pollen would coat the mud puddles and leave yellow streaks on the wet, black pavement as it washed down the streets.
I’ve been wanting to go hiking, or at least get out into the trees. Everything aligned just right on Sunday. I was feeling fairly well because the previous week was my recovery week with no chemo pills. We figured I was feeling as well as I was going to feel for awhile, because chemo was starting again the next day. Our weather here has been warm but exceedingly windy. On Sunday the wind died down briefly in the afternoon and we grabbed our chance.
We decided we’d drive up to the north side of the Sandias, which is only about half hour away. The trails up there get less use, because they are farther away than the many trails we have right here along the east side of Albuquerque. And we knew of one trail in particular that rarely gets much use at all. It’s off a back road, unnamed, unmarked, and doesn’t actually go anywhere.
Another good thing about this particular trail is it doesn’t climb very steeply (that being correlated with the fact that it doesn’t actually go anywhere). Most of the local trails make their way up to the crest eventually, which is a long, hard climb. But this one just meanders slowly up a low lying wash.
We took the camper van so I could rest in the van if needed. I didn’t want to get out there and have to turn right around and drive home if I wasn’t feeling well. We figured if I wasn’t up for hiking, we could hang out in the van with the side door wide open and enjoy the forest from there. We brought food and magazines.
I hiked very slowly, but to my surprise, I walked for almost 40 minutes out, and 40 minutes back, which is vastly farther than I’ve walked since my surgery. It was only a month or so ago that I was barely managing to walk one block. It was really wonderful to be out hiking again.
Yay trees! I’m all covered up because the meds make me sensitive to the sun.
And mountains in the distance. I was very happy.
On our way down I heard talking up ahead, so I assumed we were coming upon a small group of hikers. But when I rounded the bend, I saw just one man, sprawled out in the sand, talking to himself.
I stopped, confused, trying to assess the threat level. He was laying on his stomach with his head in the sand, his knees pulled up under himself. Was he hurt? Did he need help? Was he crazy? Dangerous?
He was speaking in a soothing voice and didn’t appear threatening. Then I saw it – his phone propped up facing him. And in one brief instant I realized he was in a yoga pose – he was a yoga instructor, filming himself leading an online yoga class.
I stood there, not sure what to do. I didn’t want to photo bomb his yoga class! John came up behind me and said, “We can just go around.” I whispered back, “He’s filming.”
Just then the yoga instructor looked up and smiled, and motioned us to go ahead and walk through. I didn’t look toward the camera. I’d like to imagine that hikers quietly walking by increased the already excellent ambiance of his socially-distanced yoga class. It almost made me wish I knew who he was so I could join his class. Except I don’t like yoga, despite knowing a couple of instructors and having several friends who love it. It was a great place to have a class though! Just don’t lay down on any cactus.
After we got back to the van we hung out for awhile and enjoyed the view before driving home.
I’m in middle of a break week, between rounds of chemo. Unfortunately the side effects of chemo persist for quite awhile, so it’s not like I magically feel better the moment I quit taking the pills. However, I have had good days, or good parts-of-days. And I’ve had some bad days too.
The bad days include stomach issues. My stomach cycles through all the various non-fun things you don’t want your stomach to be doing. Every day is a new day, with new different kinds of stomach problems, yay! Bad days also include migraines, tooth & jaw pain, hand and foot pain, rashes, blotches, eczema and a variety of other more minor issues.
I’m also generally very tired and don’t sleep well at night. I’m having hot flashes at night, and I wonder if I’m actually going into menopause? It’s time, I’m that age. So yeah. World pandemic, cancer, migraines, menopause, let’s just get it all over with at once! On bad days I also have bad moods. Anxiety, depression, irritability. There are times when I just sit in bed, crying. On bad days I think I’m going to die (I’m not really, at least I don’t plan to anytime soon).
There are a lot of good days too. On good days, John and I walk around the neighborhood and admire the plants in everyone’s yards. On good days I sit outside in the shade and read a good book. On good days I answer emails from my friends. By the way, some of you are very good at writing those “I’m just checking in to see how you’re doing” emails. I appreciate it! It’s a gift. It’s a skill. It’s something I’m not very good at. It takes time and effort. Thank you!
On good days I spend a little time cleaning the house, and maybe cook something better than average for dinner. (Like cookies, lol!) John and I are really strictly isolating ourselves and are not bringing in groceries or take-out or delivery at this time. We are eventually going to have to get another grocery delivery. I am sick of frozen vegetables and really want a good salad. Mmmmm…butter lettuce with chilled shrimp in a lemon dill dressing. And I’d like a croissant with that, please. Other days I dream of mixed greens with all the Greek toppings you can imagine. I’m dreaming about food. I mean, literally.
It was not all that long ago that John and I happened to have an off-hand conversation about how we never dream about food. John usually dreams about being late to catch his plane and his presentation isn’t ready. I dream about falling-down houses with gaps in the walls and missing fence boards and my dogs are going to get loose. Neither of us ever used to dream about food. I am now dreaming about food.
On good days I do a little stretching to music and look forward to the day when I can work out again. On good days I amuse myself with organizing the pictures and music on my computer. I know that sounds super boring. Imagine it being similar to a playing a puzzle or playing solitaire. I’m really not up for much mentally right now. I basically can’t handle the news, or most TV shows. Anything that most people consider entertaining is going to be too much for me. But I enjoy my pictures and my music collection – of about 10,000 songs and over 40,000 pictures. It should keep me busy for awhile!
Before cancer I used to read publications like the Atlantic and the Economist. I now read short, lightweight novels set in places like southern France or remote Greek islands, with feel-good, soap-opera plots. I am just not the me I used to be. Although I did recently read a heavy and thought-provoking book about what it’s like to be nonbinary. Maybe I’ll post more about that soon, it was interesting.
John and I are planting things in the yard. We have sprouts coming up and flowers blooming.
You’re like, “Uh, dirt and weeds?” No, seriously, those are BABY FLOWERS!
I’m even coaching a little bit. I have a few good clients who know my situation and are flexible if I have to reschedule without much warning. It’s good to be able to still do something useful, even though I’m stuck at home. That’s the advantage of a part-time, home-based business!
I took a risk and booked a vacation rental with a private pool in Tucson for the end of August. Remember how much I loved the pool last year? It’s so weird to think back and realize that I had cancer then, but I didn’t know it. The house I rented this year is smaller, more affordable, and closer to the bike trails. It looks nice in the pictures in the internet ad.
Note that the only two pictures I bothered to post are of the pool, lol. But don’t worry, the pool comes with a pet-friendly house. I’m really hoping that the chemo, cancer, covid, and everything will line up right so we can go.
The goal was 2 weeks of chemo and one week off, before doing it all over again. Well, I made it 12 days. Which is pretty close to 14 days. But not quite. I did ok for the first 8 or 9 days and then it got really hard. Now I’m going to rest for 9 days and see about starting again.
Maybe when I start back up again I can take a slightly lower dose, or only take it for one week before a break rather than try to do two weeks straight. I’ll have to see what my doctor says. I talked with her on Wednesday when things first got bad, and we decided to wait for one more day to see if anything improved. She was supposed to call back on Thursday but never did. Meanwhile I was continuing to get worse. So when she didn’t call back on Friday either, I went ahead and decided that my last dose for this round would be my Friday night dose.
The protocol for my type of chemotherapy is 2 weeks taking the chemo pills, then one week off, then repeat. So I’m happy to be surviving my second week. It’s my second week in this round. It’s actually my third week counting that first week at the beginning of the month that didn’t go well.
I had blood work done Friday and a zoom appointment with my doctor yesterday. My white blood cell count has dropped some, as expected. The chemo will do that. I’m also quite tired and don’t feel like doing anything. That’s also expected. I’m grateful that so far I don’t have nausea.
My doctor says that the side effects can be cumulative. That’s why there’s a week off every third week; to attempt to recuperate. But she’s warning me that it could slowly get harder. In addition to the side effects that are simply annoying, or difficult for me to tolerate, there’s also a chance that the chemo could be doing more serious damage, such as to my liver and kidneys. So they check for that with regular blood work.
The doctor doesn’t know how long I’ll be on chemo. The full protocol for this kind of chemo alone (without the second kind that I didn’t tolerate well) is 6 months. But it sounds like she doesn’t think she’ll have me do the whole 6 months. That’s because as far as they can tell, I don’t have active cancer cells right now, so they don’t want to overdo it and put me at risk for organ damage or something, when all we’re trying to do is reduce the risk of reoccurrence.
It would be a different calculation if I definitely still had cancer, in which case they would be more aggressive and less worried about collateral damage. So basically she’s going to have me take the chemo for as long as I’m tolerating it well, for as long as she’s confident we aren’t doing any significant damage, for possibly up to 6 months, but maybe less. We’re just going to take one week at a time.
Meanwhile, I’m trying to keep my motivation up. For example, I’m trying to walk a little bit every day. Typically I enjoy walks and don’t have to talk myself into them. But lately I just don’t feel like doing anything. Now it’s taking discipline to get myself out there.
I’m also not doing a particularly good job of showing up to my various Zoom meetings. Sometimes I show up, but a lot of times I don’t. I’m also not reaching out a lot. I’ll think of a friend and say to myself, “Oh, I should call her.” And then I don’t do it. I guess maybe we’re all feeling that way right now.
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