Update from Camp Chemo – On to Cycle 2

Cycle 2 is officially underway.

As a reminder, here is how my BEP chemo regimen works. I am doing 3 cycles of BEP (Bleomycin, Etoposide, cisPlatin). Each cycle lasts 3 weeks, so a total of 9 weeks. Bleomycin is given every Tuesday for all 9 weeks. Etoposide and cisplatin are given for 5 consecutive days in the first week of the cycle.

WeekMTuWThFSaSu
Weeks 1/4/7E,PB,E,PE,PE,PE,P
Weeks 2/5/8B
Weeks 3/6/9B

Today was the first day of week 4.

Last week was up and down. Last weekend I was feeling really good. The side effects of Week 1 had mostly worn off and I was looking forward to a really good Week 3 to send me into Cycle 2 feeling strong. It didn’t work out exactly that way.

On Monday, seemingly out of the blue, I developed severe hay fever. Sneezing, runny nose, red and watery eyes. I’ve never had allergies before. I know it’s possible to develop them as an adult, and maybe that’s the explanation. The nurses said it’s probably related to the impact of the chemo on my immune system, given that allergies are an immune system response. Whatever the cause, the effect was unpleasant. I have a newfound empathy for those who struggle with seasonal allergies. I started taking Zyrtec and Flonase, and that has done a good job of controlling the hay fever symptoms – maybe too good, because now my nasal passages are all dried out, which is also uncomfortable. So I’m going to dial back the antihistamines and hope that the allergies don’t come back.

Speaking of the immune system, I don’t really have one right now. My white blood cell counts are 900 per microliter; normal is 3,600 to 10,400 per microliter. So if I see you, don’t be offended if I don’t give you a big kiss. My platelet counts had been down as low as 28,000 per microliter (normal range is 142,000 – 328,000), but as of Friday I was back up to 131,000. These are expected side effects of the myelosuppressive effects of the E and P drugs. The low platelet count showed itself on Tuesday. I had to get a COVID test – I must have had 10 of them over the past few months – and the swab caused a nosebleed. Which then took 20 minutes to get stopped. So I’m trying to be extra careful about cuts and scrapes going forward.

The other thing that happened last week is, I started feeling side effects of the bleomycin for the first time. I had been entertaining the notion that I would only get side effects from the E and the P, and I would coast through the B infusions. Turns out that’s not going to be the case. On Wednesday afternoon I started running a low grade fever, which was concerning considering I have no immune system. But after consulting with a nurse, we concluded that it was mostly like a side effect of the bleomycin rather than some sort of infection. The fever lasted into Thursday but was gone by Friday morning. In addition to the fever, I had a mild version of the generally gross feeling that I got from the E/P during week 1.

And yesterday, I started noticing my hair coming out. You’re probably thinking, “hey Jake, I hate to tell you but it’s been coming out for 20 years”. So it has, and this certainly won’t be as traumatic for me as it is for people who actually have good hair. Looking for the silver lining, I am looking forward to not having to shave for a while. And I hope to lose all that unwanted hair in unnatural places that we Men of a Certain Age tend to get.

So it wasn’t the blissful, side effect-free week I was hoping for. Still, on the whole, it wasn’t too bad, nothing compared to the nadir of 2 weeks ago. My appetite was OK. I was able to go to lunch with a couple of friends whom I hadn’t seen in a long time. I was able to get out and take a walk almost every day. My parents (both fully vaccinated) came to see us this weekend, and we had a nice visit. Keeley had her first soccer game of the spring this Saturday and they won 2-0.

The weather was really beautiful here last week. It feels like spring has sprung. But I’m not fooled; this is the infamous False Spring which often happens this time of year in North Carolina. It lures the naïve and the overly hopeful into putting coats and blankets away and planting spring flowers and vegetables. Don’t be a victim. You might get lucky; occasionally False Spring turns out to have been True Spring. But in most years, there is one more cold snap that nips those tender young plants and sends everyone rifling through the closet for those coats and blankets. I remember sitting in my office in 2019 and seeing snowflakes one April morning. It can happen.

This time of year always gets me thinking about three things: March Madness, baseball season, and especially my garden. Spring is the season of hope, when gardeners dream of vanquishing the ghosts of gardens past. I’ve had a lot of time to think and plan this year. I have two raised beds, each about 50 square feet. One is a perennial herb garden, and the other I use as a vegetable garden. The herb garden is established with rosemary, oregano, lemon balm, thyme, and green onions. I keep trying to get a sage plant established, and they keep dying. But otherwise, I have it like I want it. It does take quite a bit of cutting back and tidying up each spring, but I have done most of that work already. If you like to cook, you really ought to have an herb garden. The herbs I listed are easy to establish and relatively low maintenance, and you never have to be without fresh herbs again.

As annual herbs, I typically grow dill, basil, and parsley. Dill is easy to grow from seed. I know some gardening books say that everything is easy to grow, but dill really is. If you scatter some seed on the dirt in a sunny place, you’re probably going to have dill. We use it for dill pickles, summer salads, and a few other dishes such as carrots cooked in butter and beef stroganoff. Basil is a little more persnickety, but you have to try, don’t you? I’ve had success growing from seed, but don’t hesitate to buy transplants. Some years I’ve had problems with some sort of fungus that causes it to yellow and wilt. I hope to avoid that this year. I have this vision of an abundant harvest of cucumbers, tomatoes, and basil from July through September and the endless variations of yummy salads that can be built from those essential ingredients.

Parsley, I gave up trying to grow from seed. It’s not worth it. Grow it in 2 containers. Get yourself some good potting soil, and twice a year, say March and September, buy a few plants from the garden center and stick them in the container. That’s all there is to it. The fall-transplanted parsley will last through the winter and will go to seed when the weather warms up in April and May. At which time, the March transplants will be ready to pick up the slack. That way, you have parsley all year. The summer parsley will appreciate some afternoon shade – parsley doesn’t like hot weather. One more thing – if you’re using it for cooking, which you should be, don’t bother with the curly-leaf kind. Get the Italian or flat-leaf kind.

In the vegetable garden, my mainstays are tomatoes, cucumbers, and peppers. I attempt to grow squash each year, but each year I have the same problem. In my limited space, I have room for only one or two plants. And each year, the squash vine borer larva kills them. It’s insidious – your squash plant looks so vigorous for a while. But about the time it should be setting fruit, you notice the growth starts to seem less vigorous. Then one day you come out and the whole plant is wilted. When you examine the base of the stem, it looks like termites have eaten it away. And sure enough, there is a big fat larva inside the stem who has killed the whole plant. There is nothing to be done.

I’ve spent countless hours looking for remedies and finding none, so at this point I’m declaring myself licked. I’ll buy squash from the grocery store. Cucumbers, on the other hand, I’ve never had a problem with. Some years I grow them vertically on a trellis, other years on the ground. Either way, we always have a superabundance. We eat a ton of them fresh, and last summer we made a bunch of homemade pickles which we are still enjoying. I’ve had challenges with peppers in the past, but last year I tried a new variety called Right on Red, and it worked really well. As a result, we had an overabundance of peppers as well. They were small peppers, but there were a ton of them. So I’m going to try that again this year.

With tomatoes, I can always get them to grow, but the two problems are 1) there are never enough and 2) chipmunks. Everybody in our house eats tomatoes, and they just don’t last. I’d love to have the superabundance problem with tomatoes that we had with cukes and peppers last year. So I’m stepping up production this year, targeting 11 plants for full size tomatoes and 6 of a mini variety for cherry tomatoes. As for the chipmunks, I’ve had years when we hardly got a single tomato. They ate every one. They are amazing at climbing anything to get to them. I’ve watched them from a window. They look like flying squirrels, jumping from one plant to another and swiping at a tomato to knock it off the plant. Then they eat about a quarter of it and leave the rest. But a couple of years ago, I figured out a solution. I won’t go into detail, but suffice it to say, we are doing our part to control the chipmunk population.

I haven’t done much with flowers in the past, but with all my “free time” this year, I have a flower project. We have a wooden retaining wall in our backyard that is about 40 feet long and 5 feet tall. I’m going to install about 10 window boxes – you know the kind with the black metal frame and the coco liner? – at the top of the wall, and fill them with flowers. I started a bunch of flower seeds in peat pots the other day. I’m going to use black eyed susan vine as the centerpiece of each box, which I hope will cascade over the front and down to the ground. Then I will fill in with marigolds, zinnias, and candytuft. In my mind, it looks resplendent. Spring is the season for dreamers.

Or maybe I’ll spend the whole spring lying on the couch, feeling miserable. I don’t know. I hope I at least have enough energy to tend a garden. Coming back to one of my other March rituals, I am looking forward to watching March Madness. The opening weekend will be Friday through Monday, which will probably correspond with my lowest point. If I can’t do anything else, I will find the strength to open one eye and watch some college basketball. I think the Tar Heels got shafted a bit with an 8 seed and an opening game against a good Wisconsin team. But if they can win that game, I think Baylor can be had.

I’d better bring this one to a close. Thank you for your continued cards, letter, meals, well wishes, and especially your prayers. Our cup runneth over. Pray that the side effects of this week’s treatment are no worse than the first cycle. That would be a good outcome from my perspective. I’ll update again when I am feeling well enough to do so.

Update from Camp Chemo – 2 weeks in

How did the first 2 weeks of Camp Chemo go, you ask?  Well, in the immortal words of coach Jim Mora,

I’ve been to lots of camps, y’all.  4-H Camp.  Duke TIP (4 times).  Basketball camp. Baseball camp.  Governor’s School (shout out to Mara O’Neil!).  Outward Bound.  Clef Camp.  I speak from some experience here.

This is the worst camp ever. 

OK, maybe Camp Crystal Lake is worse. But this has got to be next. Activities are non-existent.  Food is terrible.  The camp counselors are no fun.  Where is the awkward icebreaker where you meet your fellow campers?  Where is the campfire where you roast s’mores and sing songs?  Where is the zipline?  Where are the dances?  They have none of that here!

And don’t even get me started on the cost.  For the first week, we just got a bill for $22,000!  What a rip-off! (That’s true by the way… thankful for insurance)

All kidding aside, it has been a rough couple of weeks.  I could give you a day-by-day rundown of how I felt, but I thought it might be more insightful to put it in the form of an infographic. Because, well because that’s the way my brain works.

To remind you of the BEP chemo cycle, weeks 1, 4, and 7 are the heavy weeks where I have to go in every day and get infusions of E(toposide) and cis(P)latin.  Those are the drugs that make you feel bad.  Weeks 2 and 3 are recovery weeks before Cycle 2 starts in week 4 (March 15 for me).  The B drug (bleomycin) has had minimal side effects so far.

So far, the main side effects I would put under three headings:

  1. Gastrointestinal
  2. The Chemo Head Rush
  3. General fatigue

Under the gastrointestinal heading, there are several issues.  First, these drugs are highly nausea-inducing.  Thankfully, they have some excellent anti-nausea medications which have enabled me to keep food down; but it has turned eating into something to be dreaded.  Foods that I normally like have become repulsive to me.  Then there’s the bloating.  See, all these drugs are delivered intravenously in a giant bag of fluid.  All that fluid is going into your body.  And so by about Wednesday of last week, I developed this intensely unpleasant bloated feeling, like my organs were all floating, like if you cut me I would bleed water.  That has gotten better, but I still feel somewhat bloated and I have to force myself to drink water as that repulses me just like some of the food does.  And to put a cherry on top of it all, some of the anti-nausea medications can cause severe constipation.  It all made for a delightful weekend.

Then there is the Head Rush.  This I was not prepared for at all.  From about last Wednesday on – and I still feel it although not as much – I have felt a constant head rush.  Like there’s an alarm clock inside your head.  Ears ringing, unable to think clearly, even a little blurred vision at times.  Really makes you want to go and lie down.  It’s worst in the mornings.  Over the weekend, I spent most of the mornings lying down with my eyes closed, just enduring.

But as the graph shows, I turned the corner and now I’m gaining ground every day.  By Wednesday, I was able to work a more or less normal day, and Marilyn and I even went out to lunch. I think I am going to make it through Cycle 1.

I have decided to take a leave of absence from my job. My plan initially was to see how the chemo affects me, in hopes that I could work during the recovery weeks. Now I’ve seen it, and I’m not going to be much good. Everyone at work has been supportive of my decision and encouraged me to go home, get well, and come back strong. So that’s what I’m going to do. I am greatly blessed to work for an employer that cares about their employees and support them in taking care of themselves and their families.

We continue to be incredibly blessed with the outpouring of support. So many people have sent cards, texts, and well wishes. So many people are praying for us. We’ve had wonderful dinners, gift cards for dinners, gift baskets. We may not have to cook again until 2024. Thank you so much for all of this.

And, last but not least, let me take a moment to praise my wonderful wife, who has been doing pretty much everything at our house for the past two weeks, including taking care of me. I couldn’t imagine going through this without her. She is the best.

Until next time –