Today is the one-year anniversary of my last dose of chemo!
I wanted to keep going, but my body told me I’d had enough. I had gained about 30 pounds; most of the hair on my head and body was gone; my lungs were beginning to retain fluid; I couldn’t walk up a single flight of stairs without pausing; my fingernails were so brittle I couldn’t open the cat food cans; and I had swelled up from head to toe to the point I almost needed a shoehorn to put on my slippers.
The spirit was willing, but the flesh was weak as they say. My doctor agreed without question that I couldn’t have managed another session without the side effects becoming dire.
I managed eight treatments over a six-month period, which he said was more than most, and made significant progress. My real trial, however, was about to begin.
You know how sometimes, when life is really making you struggle, you’re like, “Whatever I’m being prepared for, let’s just get on with it already.” Chemo and the recovery from it turned out to be it. Trust me, the recovery is just as hard if not harder than treatment. You have to push through it and work at making yourself better and stronger day by day. The option, of course, is simply to accept your frailer self and live within its limits.
You know which path I chose.
I went back to the gym and was elated a month later when I was able to jog a little bit on the track. It wasn’t really running, though, just a faster trudging for the land whale I felt I had become. I was equally thrilled the first time I made it up the steps in one go. The swelling abated, my lungs cleared, and my nails grew back. Curiously, my hair came back a bit thicker and just as blond as ever. I’m about to do my third self-inflicted haircut since with a kit I bought at CVS back then.
I also had our hyperactive garden to keep me active, which took over for the gym in the summer. With a lot of help from Beth and one of her friends, we got it planted and it did fairly well with my limited ability to tend it at first. By season’s end, I was able to close it out properly for the first time and create a two-step composting station. I expect a good start to this year’s microfarm.
I’m back in the gym three days a week, starting cautiously, yet leaving my muscles knowing I’ve worked out, and I am actually running. I focus on the motion: picking my feet and knees up, feeling the motion in my hips, and putting some spring into my calves. Each time, I string longer bits of running into walking around the track. By months end, I expect to be doing several laps at a time. And this year, I will continue gym workouts as well as working in the garden.
Today I feel better than I did when I first retired. At that point, the cancer was spreading into my spine and ribs. Now, it’s beat down and tamed further than we had first envisioned. I’ve already gotten down from land whale to something more like that grunting rhino at the back of the stampede in Jumanji. Hopefully, I’ll achieve something like retired race horse or at least quarter-horse by the end of the year. You know I’m not yet ready to be put out to pasture.
Chemo does a number on you. Cancer itself slowly steals your stamina away. Treatment, however, hits you hard in the week after. I make a to-do list, but when just going up and down stairs leaves you out of breath, you hit a point where you need to sit and recover. Some days, you don’t manage to get back to your list.
Relaxing and warming up after a hike and a couple errands.
This past weekend, when the thunderstorms blew in and the temperatures dropped ten degrees into the fifties, it hit me like a wall of bricks. I was doing well, had popped over to Aldi for some last-minute items to can beef stew for the winter. Then, BAM. Done for the day and almost for the weekend. As I type this on Monday, I am still aching and some of my fingertips are a little numb, a potentially permanent side effect.
It normally takes me about a week to recover. I receive chemo on a Thursday morning and it gets to me late Friday night or Saturday morning. I feel like I have the flu with fatigue, joint pain, and muscle aches from head to toe. My sense of taste becomes deadened until the following Thursday. I simply eat canned soup and just make something for Beth. I don’t think much of the soups, which we added to the stash when they were on sale, but given I can’t really taste them, it doesn’t matter. I guess you can call that a silver lining.
During the week right after treatment, energy leaves me quickly during the day. I don’t fully recover my strength until sometime in the week after the week after, i.e., the second week. For example, when we put up our shed in the week after a session, the three days surrounding prepping, erecting, and utilizing it took enough of my energy I ended up resting (doing nothing) on the fourth day. It was a low energy day to begin the second week.
Princess and Yui didn’t mind, of course. They got a couple of hours of extra lap time. I spend much of my day cuddling them individually as it is. (Can you say spoiled?) During recovery week, they get their fill and then some. Yui seemed to be enjoying the hockey game I was watching at lunch.
Of the other two, Wyfa is a good one for hopping onto my desk for short periods while I’m working. I’ll always stop to give her attention. Cute, little Blano comes around now and then, when she feels like it. She lives life on her own time.
I bounced back the next day for a short walk to get some air and check out some early fall colors at a nearby park. After which we stopped by our (relatively) local, independent butcher for some very fresh brats. We posted a video a few months back about the processor and how you can get farm to table beef even in the heart of the city. Of course, I was getting tired by then and was glad Beth did the driving that day. We stopped for lunch, which I really couldn’t taste, but was needed sustenance.
Fine dining while your laundry runs next door. Small town life.
Without a doubt, loss of taste is the worst side effect. The lethargy and body aches I expected and was prepared for. The chills come and go. I can handle those symptoms easily enough, because I’ve experienced similar malaise from the cold or flu. The loss of taste is an entirely new sensation (or lack thereof) and I am still mentally and emotionally adjusting to it.
During the third week I am at my best, feeling normal; as though I wasn’t sick and generally with my usual energy. I can still end up worn out sooner than expected. Though that doesn’t happen as often or comes on after a doing significant amount of work in the third week. I had one of those days after the October session with a lot of garden cleanup, getting more stuff into the shed, and making a couple of desserts for the Halloween party I went to.
Today, the start of the week after the early November session, I have only one task on my to do list: the beef stew because the meat is thawed and the veggies are fresh. It involves chopping celery, onions, etc. for a while, which I will do while sitting. Still, this alone may tire me out. Tomorrow’s goal is yet to be determined; it depends on how well I do today. It’s frustrating not to be able to do everything I normally would.
Of course, the point of aggressive chemo treatment is to knock the cancer back to where I can live my normal life going forward. I have three sessions left. My oncologist has said several times the idea is for me to able to live my life and he foresees a lot of years ahead of me.
So do I.
I’m making plans, short and long term. For example, the outdoor greenhouse I just put up. Short term, see how well it works, given this will be the first season I’m using it. Next year, I’ll beef up the frame inside with some wood and attach some very heavy plastic to the inside to create a second wall with reduced drafts in an attempt to use it year-round for greens and other cool weather crops, as well as expanding its capacity. Long term, replace it with a permanent structure toward the back of the property once the old elm needs to come down.
The wooden garden beds are being replaced with cement blocks and pavers between to make them more maintenance free as I get older. As I mentioned before, the orchard is already started in the front yard. We have room for eight dwarf trees and need to try some different fruits to determine which types it will be. In the spring, I will add four more blue spruce or balsam firs to the eight spruce we have at the back, which we are growing to become our Yule trees of the future. We’ll be able to harvest the first one in a few years, about the same time we’re getting enough apples for making hot, spiced cider to sip as we decorate. Well, me anyway. Beth will likely stick to hot cocoa.
A walkway. More blocks will be set to contain the bed. Half cinder blocks form the corners and make for planters.
The price of replacing a tree is less than half of buying one from a cut-your-own, tree farm and we are addicted to live trees. The one we use will return to the garden as compost or wood ash. Nothing gets wasted.
Not even my time during recovery week. Because a body does need time to heal. Which leads to the thought floating around in my mind this week. Yes, there are times when you need to make your coffee strong, put on some loud, rock music, and handle your business; like getting chemo regardless how hard it hits you. When that’s finished, though, it’s time kick back, put your feet up, and quietly sip a hot cup of tea to replenish your energy stores, while you decide what’s next once you have.
Something I didn’t mention last time was my reaction to being in the hospital. I was only inpatient once before when I was nineteen and needed a pilonidal cyst removed from my tailbone. That was forty-five years ago. Meaning my concept and expectations of staying in the hospital were more outdated than VHS and even the first desktop PCs.
I couldn’t have been more surprised, waking up the morning after my admission, to find myself in a large, private room with cable TV and a huge bathroom. The transport person, whatever they are called now, brought me in at eleven the night before, exhausted and just wanting to sleep, after ten hours in the ER. When I came to in the morning, I opened my eyes to a room looking more like a hotel room than some institutional gray chamber with a drab linoleum floor.
At first, I thought I must have picked some really good insurance to get a private room, until I walked the hallway to stretch my legs on day two and saw all of the rooms were like mine. With some sixty channels to choose from on the TV, I found something to watch throughout the day and evening and, because I mostly watched Food Network, learned a few more things about preparation and cooking. I can never say I’m truly self-taught for all of the tips and techniques I’ve learned from watching cooking shows.
What really amazed me, and still makes me shake my head, was the change in the food and how they serve you. Forty-five years ago, you were given a paper form the night before and chose your meals for the day from three choices for each breakfast, lunch, and dinner. They brought them to you when they brought them to you, along with everyone else on your floor, on cafeteria trays with covered plates and basic condiments. It was basically the lunch ladies coming to you instead of you going through the line.
Not anymore. Now you’re given a menu and a number to call whenever you’re getting hungry. They even write the number on a dry erase board on the wall so you don’t forget. You call them any time during the hours of operation (6a to 8p) and they answer, “Room Service.”
Room service! Really? Aren’t you hyping yourselves up a bit there?
Well, actually, not by much. They’re not going to earn any Michelin stars, but the food was quite decent. I’ve had worse at some diners during my days. You order what you want, no real limit, and they bring it to you in about half an hour to forty-five minutes. If you want, you can order for the day and tell them when to bring each meal.
Between that and having cable, and my daughter bringing me a notepad, my two days in the hospital turned into a nice, little break I hadn’t realized I needed. At least, once I was out of the ER, and after I had figured how to manage the catheter without much pain or discomfort.
Of course, next time I need a break I’ll get a hotel somewhere. I’ve been wanting to spend a few winter days in a snowy cabin in the woods with a fireplace and good places to eat nearby. I’ve been checking out Starved Rock and might still book a cabin in February. Take a few brisk hikes. Eat a bit too much. And read beside a fire in the evening. We’ll see.
I’m actually just beginning to feel mostly normal again. August and September were a whirlwind of procedures and recoveries. I’m still tender from where they installed a port two weeks ago. The port became necessary because of what chemo does to your peripheral veins. For the TURP procedure, the OR nurse wasn’t able to start my IV. The anesthesiologist, who’d been around for ages and carried her own supplies just in case, needed two sticks to get it going. The following chemo required two tries and a lot of painful maneuvering of the catheter in the vein to get a good flow. The port eliminates that issue (and pain).
The result of three sticks to get an IV started for the TURP procedure, and why I had a port installed.
It’ll be another couple of weeks before I’m past the ten to fifteen pound weight limit for lifting and carrying. The doctor who installed the port told me to listen to my body and the tenderness at the site is telling me to wait a bit longer before getting back to normal activities. Currently I’m relying a lot on my daughter’s strong back for tasks which cannot wait, like moving tropical plants inside from the gazebo. I need to lay some dark colored pavers in the greenhouse, but I should have some time yet before it gets too cold for working outside.
I definitely want to get outdoor activities completed before the real cold starts. I’ve erected greenhouses and done other projects in the cold. Your fingers get cold and raw, and your pants end up frigidly soaked from cuffs to knees at least. I don’t recommend working outside in the cold. Are you considering a greenhouse, hoophouse, or some built-ins for your garden? Do it now while the weather is still relatively mild. Because I can guarantee the conditions will be raw in the early spring, when you can’t wait any longer. Get everything outside done in the next month. That’s my advice to you.
If you’ve been with me for a few years, you know I’ve been starting my seedlings in a basement greenhouse for the last five seasons, the entire time we’ve lived here. For 2023, I’m moving to an outside greenhouse for a few reasons. One, hardening plants of in the spring means a lot of trips up and down the stairs. My knees aren’t what they used to be, though, and don’t want to be doing that anymore. Two, I’ve doubled the tropical plants for the gazebo and yard. I need the space to keep them over the winter. Three, because I can. I already owned a 6×8 ShelterLogic greenhouse. The 5×5 one I’ve been using in the basement (absent the cover), will fit inside it. I’ve researched my village’s codes and nothing prohibits me from using the ShelterLogic structure. In fact, I have seen several of them around town.
Peppers and Roman ChamomileThe basement greenhouse with cat protection.My six by eight greenhouse. The front and back panels need some locking down.
Of course, I’ve locked it down. It’s cabled to stout, thirty-inch earth anchors; 2400lbs of holding power each, or 1.2 tons at each corner. It’s stable. Having the smaller one inside of it will give me basically a double-walled structure I can stand up in. Pavers will give me a solid floor. Heat will come from an old, oil-filled radiator type space heater set at about 55 or 60 degrees. Additional heat will come from a dozen heating mats, attached to a thermostat-controlled outlet. These devices are normally used to keep reptile terrariums within the proper temperature range. I will use mine to switch off the mats before they get too hot and cook the seedlings, then come back on when the greenhouse temperature has dropped low enough to need them.
Two independently controlled outlets. Each will support six growing mats.
This setup will give me the cooler temperatures broccoli and cauliflower want, while providing the warmer soil temperatures tomatoes and peppers need. It also allows me to expand from twelve to twenty shelves for trays and pots. For 2024 and beyond, I’ll increase the capacity to twenty-four shelves by removing the smaller greenhouse and applying a second, very thick layer of plastic to the inside of the outer greenhouse frame.
I don’t have the time or money for that this fall, even had I been recovered enough. And the weather will definitely be uncooperative when it’s time to start seeds early next spring. The greenhouse within the greenhouse will have to do for 2023.
I’m going to be here for years and years yet. I can wait a season; and see how moving outside works for this coming year. There’s always something that needs tweaking.
One thing we decided not to wait on is our orchard. We planted a honeysweet pear, a granny smith apple, and a gala apple at the end of September. It will be at least 2024 before we get the first fruit. Next year we will add, at a minimum, self-pollinating varieties of brown fig, cherry, and cold hardy peach. There will be two more, but we haven’t decided yet amongst pomegranate, apricot, plum, pawpaw, or something we haven’t considered yet. We need to do some taste testing and recipe trying.
Granny Smith apple ready to plant. The stake in the background is where the Gala apple goes. You need both for proper pollination.Granny Smith apple in the ground with lower trunk protection.
The orchard is going into the front yard, which I discovered through failed pumpkins, would need a lot of amendment and improvement of the surface soil to be productive. We’re using dwarf varieties to keep them shorter than the house, given we will eventually install solar panels on the roof. We also don’t need the production volumes of full-sized trees. I’ll be needing to buy a freeze dryer for the eight varieties we’ll have.
And that’s that for this week. Getting better in the present and preparing for the future, near term and years out. A friend of mine, who’s a physical therapist, told me he has a client who’s been dealing with prostate cancer for thirty years, and that the only way anyone dies of it anymore is if they live to be one-hundred and fifty years old.
Which, as I’ve told several friends before, just happens to be my goal.
Okay. Wow! How does one encapsulate the madness that was the second half of my summer? I feel like I lost half of this year, although the harvesting and all continued to a lesser extent than normal.
My cancer turned out to be further along than I had thought at first. Having spread to a handful of points in my bones, it is considered to be an advanced cancer. At this point, it is a chronic condition I will have to manage for the rest of my life. Which should be decades I expect, and my oncologist does not disagree, because I am otherwise so healthy.
The first reality check that my body can’t shake things off like before came at the end of July. I didn’t think it worth posting that I was in the ER in April with severe back pain. After several tests, we determined I’d simply strained it with hammering in new posts in the cold, damp weather. I reaggravated the injury in July, probably putting in the floor for our gazebo. I had some pain meds still from April and figured, same injury – same meds.
Nope. Didn’t work out that way. I ended up in the hospital for two days getting my blood levels squared away thanks to severe constipation and urine retention. How bad was it? I didn’t feel the catheter being put in. If you’ve ever been cathed, you know how much pain I had to have been in. I found out the following week when I needed a second one put in, because I was still unable to pee correctly after the first was removed. It’s an experience you never forget. If you’ve never had one, my wish for you is that you never experience it. (Although there are a few people I would wish it on. None of you though.)
Diet and medication cured the constipation. The urine retention, which was related to the enlarged prostate, required surgery (TURP procedure), which I am thrilled to say was totally successful. I cannot tell you what a pleasure it is to be able to empty your bladder and get back to sleep for two or three hours instead of being up every forty-five minutes or so all freaking night.
After the hospitalization, I needed two to three weeks getting back a minimum of energy. I spent considerable time in the gazebo looking at what I needed to do without being able to spend more than five or ten minutes a day doing so. Beth did much of the harvesting in those weeks. The beans got out of control, though, and we only managed to put fourteen quart bags into the freezer for the winter; about three months worth.
We did still manage to put up twenty quarts of tomato sauce, only a few less than my goal. And the peppers! It was a good year for peppers. The jalapenos went nuts. We have eleven jars of pickled, green slices and twice as much sriracha as last year, almost an entire half gallon. We dehydrated the Anaheim peppers and I have about three jars worth of sweet peppers to pickle. With the size of our garden, we dedicate an entire bed to Alma peppers for sweet paprika. We got enough to fill an entire sixteen-ounce jar this year, probably enough for the year. (I use two tablespoons a week in my taco seasoning on Tuesdays.)
The rest of the garden produced adequately, with the exception of the sweet corn. This was the second year trying an heirloom Bantam variety; it has failed in both years in different beds. I’ve already chosen a different type for next year. Likewise, our celeriac failed to form bulbs for a second year in a row. Granted I did have them in some new garden mix I had trucked in at the start of the year. It might have been good on nitrogen, while light on potassium and phosphorous. I’ll give it one more season with better control over the soil before deciding whether to stop trying or change varieties.
This is why you keep notes; to be able to make these adjustments. Another change we’re making is the number of parsley plants we put in. We got more than enough; so much in fact we were tired of processing it by the end. We filled the ten-shelf dehydrator twice!
As for my cancer, we’re moving in the right direction. The component of your blood they use as an indication of prostate health is the PSA; prostate specific antibody. Anything over ten is bad. Mine was at 165 at my annual physical, my first in years for not having been able to afford insurance until I retired. It was a couple of months before I could get in with the urologist. By then it had reached 196. He determined, over a few weeks of testing, it was in fact cancer and that it had spread and I got the referral to the oncologist, who was able to see me a week later. It was another two weeks before we started chemo, at which point it had spiked close to 300. The first session of chemo brought it back to 180, about where I had started.
Fast forward nine weeks to session four. (I get them every three weeks.) Blood tests taken before treatment (to be sure I’m healthy enough for it) astounded me. I was hoping for my PSA to be below 100. I was blown away to see the result: 42.5.
It’s definitely working, and I’m definitely feeling it in the days after. I get treatment on a Thursday and it hits me on Saturday, although this last time it started overnight Friday. For a good five days, I feel like I have the flu: muscle aches and joint pains, accompanied by hot and cold flashes, and limited energy. ( I have renewed sympathy for women going through menopause.) As I write this on a Monday, I am still achy and a little nauseous from session four last week. The most annoying side effect, however, is the loss of taste for up to a week.
We grow our garden not just for sustainability, but to be able to make delicious meals from scratch with ultra-fresh ingredients. I’m also a scratch baker and dessert maker. A week where even water tastes funny is as close to being tortured as I ever want to get. I still season as I think fit as I cook, but need Beth to tell me if the food is as good as I wanted it to be. For breakfast, I have corn flakes and bran flakes to which I add whatever fruit I want. When my tastebuds are like this, Beth is quite accurate in referring to them as wood chips and sawdust. If there was an emoji for laughing and bawling at the same time, I’d insert it here.
Finally for this quick update, I have been purposely losing weight; so far around fifteen pounds. I’m doing this through portion control, resisting junk food, limiting desserts, and suspending having my weekly cocktail or two until after I finish with chemo in a couple of months and go on a daily tablet. I’ve been a little peckish at the end of some evenings and there have been moments where friends posted about their cocktails and I really wanted one. But I’ve held the line to this point. I can probably make it through the rest of the year.
Although it may be too early to take bets on that.
We’re about to go on a journey. In addition to posting about the garden and cooking, I will be chronicling the years of treatment and disease management I now face.
On July 6th of this year, I received a diagnosis of prostate cancer. It’s aggressive in nature. It’s gotten into my bones in a few places. It cannot be cured. Fortunately, though, it’s still early enough to get it under control and keep it minimized with proper regulation of therapies.
I cannot stress enough to all my male friends to get your annual physical. My illness was caught through elevated PSA (prostate specific antigen) levels in my blood.
A number of my posts will reflect a focus on controlling this disease. I will talk about what it takes to manage pain and expectations, as well as how I use my garden to improve my overall health. Some of the posts will be direct and pass into the realm of TMI (beginning in the next paragraph). It’s okay if you skim over those parts if you’re a woman. Guys – pay attention. These are things you need to know.
The diagnosis was not a complete surprise. I knew something was wrong back around the holidays when my semen production nosedived and then quit altogether. Given the American system of referrals and how long it can take to be seen by a specialist, it was months later when the diagnosis came. By then, I had mentally and emotionally prepared myself for it.
Although, it was still a shock a couple of days ago to learn it’s uncurable.
This is my new reality. I will never be completely free of this. I will never be completely healthy again.
On the other hand, I won’t be bedridden or needing a wheelchair or anything. I’ll have a more normal life, simply one with a lot of doctor’s visits, testing, and intermittent treatment sessions. As I had to tell one friend of mine, “I’m not dying!” She had been panicking and lamenting this shouldn’t be happening less than a year after I retired.
I will start chemotherapy in a couple of weeks. The oncologist needs to get all the pre-approvals in place with my insurance company. So far they are delaying one of my medications because of this red tape. Testosterone can aggravate the prostate and make the condition worse. The doctors want me on a testosterone suppressant. Insurance wants a lot i’s dotted and t’s crossed first. The prescription was put in to my pharmacy on Monday. It is Saturday as I write this and they still haven’t approved it.
I’m considering finding another way to buy it, like Mark Cuban’s discount pharmacy, just so I can get started on it. Or pay the $205 retail price and seek reimbursement. As though that would ever happen.
To complete my frustration level for this week, I had hurt my back overdoing it in the garden back in April. I’ve managed to aggravate it somehow and had to sleep sitting up for two nights. I’m getting spasms and sometimes enough persistent pain to make a deep breath excruciating. I end up panting or holding my breath, which hurt even more. I had a few prescription pain killers left from April and used those to give me relief at night to sleep. Those are now gone.
I bought some mid-strength (500mg) CBD oil to see if it helps me. Two drops under the tongue and wait twenty minutes. Nothing. Two more drops and wait. Still no appreciable effect. A full dropper and three ibuprofen gelcaps, followed by a heating pad, finally led to relief about another thirty minutes later. Over an hour of medicating to get to where I could lay down and sleep. Today I am mixing a few drops of CBD into whatever I am drinking to see if a slow and consistent administration helps.
Usually this is where I joke about falling apart. This week is making me question whether it’s actually just a joke. (eye roll emoji)
Switching gears, I will say I have a strong support system. Between my GF up in Wisconsin, family, and friends in the area, I have a lot of people who love me and have offered to help. For the most part, I’ll just want to have people over to hang out and laugh with. The chemo is not so harsh that I can’t drive myself to and from it. (Which is good because the nearest in-network oncologist is an hour and a half away – and I thought I had picked a good policy.) I have excellent doctors and nurses at very good medical centers. Staying positive is not going to be an issue.
Of course, I’ve always been that annoyingly upbeat kind of guy. When I used to ride the train into downtown Chicago for work, I was part of the group that stood in the vestibule because we were all so chipper and laughing in the morning. I’m sure we were still too loud for some folks in the regular parts of the cars. My friends will ask me what’s wrong, if I appear to be scowling.
In fact, I’m expecting one of the side effects of chemo to be finally knocking off this stubborn twenty or so pounds around my waist. That’s how you make lemonade when life throws you lemons.
The Little Farm in Town 