Now that that’s over

Humble apologies for neglecting my blog during chemotherapy treatments. I meant to bring you on this journey with me, but found I couldn’t after a few sessions. Altogether I had eight sessions over six months and reduced my PSA (bad number) from 394 to 5.5. At the moment, I’m at the end of a month of feeling good and am on the upswing.

Let me tell you, chemotherapy takes a lot more out of you, and in ways you might not foresee, than you would expect. You may have seen people going through the struggle and gotten some idea of the exhaustion. But you can’t really know it unless you go through it, until you feel your energy stolen, feel the sheer lack of strength in your muscles down to your bones. Until you can’t even open a jar of pickles or hold onto your phone.

My particular drug weakened my fingernails and toenails. Opening cat food cans bruised my fingertips. Eventually, they swelled and stayed swollen. Taping or bumping them against anything was painful and I had to wear latex gloves when washing dishes because the hot water made them sting. At the end of treatment, as new nails were growing in and pushing out the damaged ones, my right, big toenail broke loose at the top, while remaining attached to the new nail at the base. To prevent it being ripped off, I had to keep it taped on.

Chemo side effect

A month later the new nail growth is progressing nicely and I have been able to put the dish washing gloves aside. My fingertips still feel somewhat swollen, though.

You lose hair from everywhere on your body, not just your head. Because chemo drugs attack fast growing cells: cancer, fingernails, hair follicles, etc. My daughter and I buzzed my hair with a do-it-yourself kit. It wasn’t a perfect cut, but my hair was too thin to worry about it. Also, when I suddenly grew winded just walking up a flight of steps, my hairstyle became the least of my worries.

Of course, it’s all growing back unevenly, including my beard. Although, surprisingly, it appears to be all blond still.  For a while I expected it would just come back pure white and I’d be growing it out for the Gandalf look. As it seems to be going back to where it was, we’ll just have to get better with the DIY gear. The wizardly guise will have to wait for my later years.

My hair seems to want to come in at an angle.

My ankles began to swell, which the doctor had told me to watch out for. Eventually, all of me swelled up and my weight expanded with my ballooning body. When I looked in the mirror, I saw what could have been mistaken for a beached whale walking upright. Well, not quite that bad. But definitely a hairless, bloated, white ape. I was the heaviest I have ever been.

I joined the community fitness center to begin walking a few times a week just to keep from getting worse. The swelling was making any use of my legs difficult. I was literally plodding as I walked the track. I couldn’t walk up the stairs from our basement without pausing. Halfway through a weeklong course of water pills the swelling had reduced to where I could get up the stairs without stopping. Today, I can ascend them without needing to grab onto anything or lean on the wall. I have also started using the stationary bike at the fitness center as I work to recover normal movement.

Another set of short-lived, fast-growing cells are your tastebuds. Did you know they only last two weeks and are constantly replenishing themselves? I do now. After each treatment, and I managed eight cycles, I would have five to seven days of altered/diminished taste (dysgeusia/hypogeusia) to no taste at all (ageusia), while I waited for enough tastebuds to grow back as the initial blast from the medication eased.

There were a few days I could barely eat because everything tasted wrong or bad. Did nothing to help the weight gain, though. Guess I made up for it when my sense of taste returned.

Fortunately, the worst part of the recovery period only lasted a week. I would have a bad week, a so-so week, then a good week before receiving the next dose over the six months of treatment. I was able to get a few things done in the so-so weeks and was almost like normal in the good weeks. I managed some small projects over the winter. A few. My daughter is beginning to drum her fingers on the table waiting on some home repairs I need to make. I can put them on my radar now.

When it came time for a ninth treatment, my doctor and I took an assessment of my condition and the diminishing returns of the medication. The cancer and your body gradually build up a tolerance to the drug. Unfortunately, the cumulative side effects remained. My fingers looked ready to fall apart and if I swelled up any more I would have needed a shoehorn to put on my slippers. As it stood, fluid was beginning to collect in my lungs. We opted to stop chemotherapy at this point and go on a maintenance regimen of two drugs, one received quarterly and the other semi-annually. Neither one results in debilitating side-effects.

I’m still working to get my lungs to feel clear. My health goals for the next few weeks are to concentrate on rebuilding my lung power and endurance.

The outcome was acceptable to my oncologist. We never expected to reduce my PSA to zero. Given anything over 10 would signal a concern, had I not already had cancer, I’m also pleased with the low number. While ideally you want zero, levels of up to 4 are not unusual for a man my age. So, I can live with 5.5.

Which was the goal at the beginning of treatment; get it to a level I could live with. Literally. I will always have this disease. However, it’s at a controllable point and won’t impact my life anymore. Other than time spent going for the maintenance drugs six times a year.

If it should resurge, we have other options. One, most commonly applied, is a third medication which is like a low dose chemo drug taken daily in a pill form. We won’t go this route unless it’s necessary. Two, we did genetic testing of my cancer and found I had a P-ten mutation, for which there are several clinical trials going on right now. I could be put into one of those or go on a treatment resulting from one of them.  We have a few more tricks up our sleeve even in as good as position as I am right now.

Of course, I turn sixty-five this year and know I will need to adjust my activities eventually, regardless of having cancer. I had already begun building my new beds out of low maintenance stone so I’m not rebuilding beds every year. The expansion went on hold last fall. This week, I received the blocks and got back to it. I’ll pace myself; one dug in and leveled out per day when the weather is decent. Then, two weeks from now, I’ll start my seedlings for the year, one I look forward to being more normal. I have never craved normal and boring more in my life.

As though our microfarm bores me. It’s challenging and what I’ve always wanted to have. And now that cancer is no longer in control and chemotherapy with all the associated lost time and damage to my body is over, I can.

When chemo hits hard

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.