Cancer – Mudville Analytics

August Update

When I last posted, it was late April, and I had just finished with my chemotherapy regimen. Since then, I haven’t thought much about blogging, because there hasn’t been much to blog about. And that’s a good thing.

I feel great. In fact, I would say I feel totally normal at this point, like I never had anything wrong with me. There are a couple of small exceptions to that which I will describe later, but for the most part I’m back to normal and have been for a while now.

It did take some time after I finished chemo, not only to get the effects of the chemo out of my body, but also for my body to get rid of the pulmonary emboli (blood clots in my lungs) which I described in my previous post. I was taking blood thinners until recently, but now I’m done with that as well.

Thankfully, all the nasty side effects related to eating and digestion are gone. I was wondering if I would retain any food aversions; you know how much of that is mental, and one bad experience can make you averse to a food for years. But that hasn’t happened with me. It took some time, but I’m totally back to my old self in terms of eating.

The only lasting effects, and I want to stress that these affects are minor and are not having any significant impact on my life right now, are 1) numbness in my feet and 2) pulmonary infarction. The numbness in my feet is likely a result of some mild neuropathy, the nerve damage that is frequently associated with certain chemo drugs, including the platinum-based one that I took. But it’s not bad, just a tingling sensation on the bottom of my feet that is more or less constant. I first noticed it probably 6 weeks ago, and it hasn’t gotten any worse or better since then. I don’t know whether it will go away or not, but as long as it doesn’t get worse, it’s fine. It doesn’t bother me at all. I walked 9 miles on Wednesday at Disneyland so my feet are working just fine.

The pulmonary infarction (isn’t that a funny word?) sounds worse than it is. Infarction is the medical term for tissue death resulting from obstruction of blood flow. The best known type of infarction is a myocardial infarction, better known as a heart attack. When you have a heart attack, heart tissue dies as a result of a blood clot that prevents blood from getting to your heart.

Well, when you have a pulmonary embolism, something similar happens in your lungs. Lung tissue dies as a result of the obstruction of blood supply to that tissue. It’s like having a heart attack in your lungs. The difference is that your lungs have far more reserve than your heart. You can afford to lose a considerable amount of lung tissue without any noticeable effect on your pulmonary function. And that seems to be the case with me. My oncologist says the infarctions (there are multiple) are evident on the CT scan, but I can’t tell any difference in my pulmonary function. He says it’s nothing to worry about. So I’m not going to. In fact, today I went for a short run with Keeley, and apart from the fact that I’m dreadfully out of shape, which is a different problem, I felt fine. I’m thinking of running a 10K this fall.

At this point, I am in monitoring mode in terms of my cancer. I had a CT scan in May that indicated that my lymph nodes were back down to a normal size, which is the best indication that the cancer is gone. Going forward, I’ll have chest X-rays at 2 month intervals and CT scans at 4-month intervals. The chest x-ray was done in June and was clear. The next milestone will be a CT scan in late September. They try to space the CT scans out as much as practicable because they subject your body to high doses of radiation.

So to summarize, my cancer is gone at least for now, and I feel great physically. As you may remember, the type of cancer I have (testicular seminoma) has a 95+% cure rate, so my prognosis is good. Of course, 95% is not 100%; even Stephen Curry misses a free throw once in a while. So I appreciate your continued prayers and good wishes.

I mentioned that we were at Disneyland on Wednesday. We were very blessed to take a Southern California vacation over the past 2 weeks, returning on Thursday. We went to San Diego and LA and managed to fit in the San Diego Zoo and Safari Park, kayaking and snorkeling in La Jolla, Sea World, Legoland, a Padres game and an Angels game, Santa Monica pier and beach, and both Disney parks. Between COVID and my cancer treatment, it had been a long time since we had taken a big family vacation, so we decided to go for it while we had the time and the means and the health to do it. And I’m so glad we did. It was great fun although of course we were all ready to kill each other at times. You know how that goes. All part of the family vacation experience. If anyone is planning a trip to any of those places, contact me and I’ll be happy to share what I learned.

Unfortunately the vacation was not such a good thing for my garden. Those beautiful window boxes are beautiful no more. August is a tough season for the garden anyway. The spring garden is pristine and tidy; the early summer garden is prolific and wild; the August garden is hot, tired, and spent. Especially when it doesn’t get watered for 2 weeks.

And that’s about all I have to report. In the best case, there will be nothing else to report about my cancer except for clear scans, and in time it will fade in our memories. So this may be my last blog post. Or maybe I will go back to occasionally blogging about sports. Or maybe I will blog about other topics. Or maybe I won’t. I enjoy writing, but it takes time. And it helps if you have experiences (like a health crisis) to write about. I’m not sure I’m the right person for an opinion-based blog.

Anyhow, I’m grateful for all of you who have followed me through this journey. The journey isn’t over, but I have good reason to be optimistic about a safe passage the rest of the way. If you’d like to unsubscribe, you’re welcome to do so. If you choose to remain subscribed, I can’t promise when or if I’ll post again, or what it might be about; only that if I do, I’ll try to make it worth reading.

Done With Chemo

That’s right – I’m done with chemo!

While this is great news overall, it is tempered with a bit of bad news, which is that I didn’t completely finish the planned dosage for all my chemo drugs. I got the full dosage of etoposide (E) and cisplatin (P), but only 2/3 of the planned dosage of bleomycin (B). I’ll explain why in a bit, but it’s like I got to the 5-yard line and then my oncologist declared the game over and pulled me off the field.

So there is that little bit of doubt, that maybe there’s one cancer cell left somewhere in my body that the remaining 1/3 of the B would have taken care of. My oncologist thinks there is a 90+% chance that we got it all. Only time will tell. If it’s going to come back, it’s usually in the first 2-3 years.

So why did we stop short on the B? The short answer is that a few weeks ago, I developed pulmonary embolism, which means blood clots in your lungs. People with cancer are at a much higher risk of pulmonary embolism. Something about the way that cancer changes your physiology, I guess. Pulmonary embolism is a serious matter, which landed me in the hospital for two nights. Now I am on blood thinners (Xarelto) and am much improved. As for how this relates to my chemo, it so happens that one of the possible side effects of B is pulmonary toxicity. To be clear, the B did not cause the pulmonary embolism, but my oncologist does not want to give me any additional B. He thinks that my pulmonary issues may increase the likelihood of me getting bleomycin lung injury, which is a rare but extremely serious side effect which often leads to death.

We went through three options. A) finish the bleomycin. B) do a fourth cycle of E and P. C) be done. My oncologist was strongly against option A, for the reasons I just explained, so it really came down to Option B vs Option C. Option B is a realistic option. In fact, for people with my kind of cancer who have pulmonary risk factors, 4 cycles of EP is often used as an alternative to 3 cycles of BEP. But in the end, we decided that the risks of another cycle of EP outweigh the potential benefits. For one, the risk of neuropathy really starts to increase with a fourth cycle. There are other rare but serious potential long-term risks as well that increase with the dosage.

Plus, as my oncologist pointed out, my cancer was caught at a very early stage of metastasis. It was in the lymph nodes, but the lymph nodes were quite small. In his words, “you didn’t have much cancer to begin with”. So he feels like that increases the likelihood that the smaller dosage should be good enough to take care of it.

What happens next? I go in for a CT scan the week after next. This will be my first scan since before chemo. Hopefully it will show a reduction in the size of those lymph nodes, and no cancer anywhere else. After that, I’ll go for scans every 3-4 months for a couple of years. After that, if there is no recurrence, the scans will become less frequent, eventually annual.

Unfortunately, there is no absolutely definitive single test that says “you’re cancer-free!”. It’s really a matter of doing periodic scans and finding nothing of concern, and in particular, lymph nodes staying the same size or getting smaller. But there isn’t a magic number that says “if your lymph node is 1 cm or less, you’re good”. We do expect to see some reduction in size with this upcoming scan, but they weren’t all that big to begin with, so my oncologist said not to get too worked up about any particular measurement. The main thing is, we’d like to see some reduction, and on subsequent scans, we’d like to see it stay the same or reduce further.

How am I feeling? All things considered, I am doing pretty well. Right now I am 2 weeks removed from my last chemo treatment, and 12 days removed from starting blood thinners to treat my pulmonary embolism. Last week from about April 8-13 was the worst of the worst. It was the bottom of my chemo cycle, and then I had the pulmonary embolism on top of that, which causes extreme shortness of breath, coughing, and rapid heartbeat. So it was a rough few days. But I’ve been improving steadily since then. I still have minor shortness of breath, but nothing like it was 2 weeks ago.

Besides the shortness of breath, the chemo effects I am still dealing with are 1) anemia, 2) pulsative head rush/tinnitus, 3) low appetite/taste changes/food aversion, 4) excessive salivation, and 5) weight loss and associated loss of strength and endurance.

Regarding the anemia, my red blood cell counts, hemoglobin counts, and hematocrit levels are all about half of what they were before I started chemo. Which places them well below the normal range and squarely in the anemic category. (If you’re interested, the numbers are: RBC 2.52; HGB 7.9; HCT 24%). This is an expected side effect of the chemo and I am confident my body will fix itself; I’m just not sure how long it will take. And while I can definitely tell that my energy level is down, I seem to be in pretty good shape for someone who is that anemic. I mean I’ve been able to get out this week and do some light work in the yard and the garden, I’ve done a little cooking, I’ve been able to go to the kids’ sporting events. I’m functioning, kind of.

The pulsative head rush/tinnitus is something I’ve been dealing with the whole time. The tinnitus (ringing in the ears) is constant. The pulsative head rush comes and goes. It tends to be worst in the morning. I feel my pulse in the back of my head. My vision blurs occasionally and in general it feels like I am in a fog and makes me want to lie down. I have no evidence to support this, but I think this may be related to the anemia. Hoping that they go away together.

My appetite is actually OK, it’s really the taste changes and aversion to food that are the problem. Those of you who know me, know that the pre-cancer me loved to eat, and I wasn’t picky about what. That’s all changed now. I don’t really want anything. Nothing seems appetizing. Once I start eating, I realize that my stomach is actually hungry and I eat a decent amount, but it’s a chore. I am really hoping that I get back to normal in this regard.

Excessive salivation is just what it sounds like. I have to take a spit cup with me everywhere I go, because my mouth is constantly filling up with saliva. This appears to be an unusual side effect. There are medications that could “dry me out” (doctor’s words), but that might lead to other complications, so for now I am chalking this up to another chemo thing that my body will hopefully self-correct over time. I sure hope so, otherwise I may never be able to go out in public again.

I’ve lost about 15 pounds that I didn’t really need to lose, and I feel weak. So I’d like to build my weight back up a bit, hopefully in the form of muscle rather than fat. My weight isn’t unhealthy, but I’m skinny. I was slim, now I’m skinny. Slim is better than skinny. Slim I think has a positive connotation (“he must really take care of himself”). Skinny has a more negative connotation (“don’t they feed this guy?”). So as I am able, I’m going to try to increase my physical activity and eat the right things to get back up to 185-190.

So that’s my aches and pains update. The good news is, now that I am two weeks removed from my last chemo treatment, it should be nowhere but up at this point. Which is really encouraging.

I should give you an update on the garden. It’s looking really good. My world has been so small for the past couple of months, and I’ve been able to do so little. One silver lining is, I’ve had an inordinate amount of time to sit on our back patio, think about the garden, and plan out what I was going to do, once I was physically able to do it. I think I mentioned in a previous update that I started a bunch of things from seed back in early March, so I (with some help from Marilyn and Cam) have been nursing those seedlings along, watering them regularly and taking them out in the sunshine to get them ready for transplanting.

I watched the weather forecast closely, because I figured there would be one more frost/freeze, just as we had this week on Wednesday and Thursday nights. Once we were clear of that, it was time to transplant, so I spent most of the day yesterday transplanting.

My main projects are the vegetable garden, and the window boxes I mounted on the retaining wall in the back yard. In the vegetable garden, I set out 18 tomato plants (6 cherry, 12 regular) and 2 cucumber plants yesterday. I have a small space reserved for 2 pepper plants that I’m going to set out in another week or two.

18 tomato plants is a lot, I know, but every year it seems like we don’t have as many tomatoes as we want, while we have surpluses of other things. So I’m trying to see if I can grow enough tomatoes so that we have more than we know what to do with. What a wonderful problem that would be to have.

I have tried various kinds of cages, trellises, and support systems, with varying degrees of success. This year I’m going to try the so-called “Florida Weave” which involves sandwiching your plants between lengths of twine. We’ll see how well it works.

As for the window boxes, we have a 60 foot wooden retaining wall in the backyard that is about 5 feet tall. I mounted nine 30-inch window boxes – the kind with the wire frame and the coconut coir liner – evenly spaced along the top of the sunny part of the wall.

Along the back of each box, I transplanted flowers that I started from seed, alternating small zinnias and marigolds in each box (box 1/3/5/7/9: zinnias, box 2/4/6/8: marigolds). Then, in the front center of each box, I transplanted a black-eyed susan vine, also grown from seed, which I hope will spill over the front of the box and grow down to the ground. Then, to fill in the spaces on the front sides, I sowed some sweet alyssum seeds. Call me in 6 weeks and I will tell you how it turned out.

Other little projects… I ordered and potted a couple of citrus trees, a Meyer lemon and a clementine tree. I thought about this long and hard. There is a reason you don’t grow citrus commercially in North Carolina; it’s because citrus trees cannot tolerate temperatures below freezing. But you can grow citrus in containers, IF you provide protection in the winter. Some people move theirs indoors, but for various reasons I don’t think that is practical for us. But I think I have a solution in the form of a small greenhouse that I can put up in the winter and move my trees in there. That’s the plan at least. These trees are fairly small, so I’m not expecting any fruit this year. But if I can take good care of them, maybe in 2022.

The herb garden is taking shape. Oregano and thyme are flush with new growth. We have lots of green onions and chives. I got some dill started and that looks good. Parsley transplants are growing like weeds in a container. My basil seedlings are coming along nicely. I planted them in peat pots. They need another week or two before they are ready for transplanting into a few containers that I bought. I’m also planning to order a bay laurel tree (that’s where bay leaves come from) which I will also keep in a container.

I’m getting long-winded, so let me conclude. We continue to be overwhelmed with the outpouring of support from so many people. Meals, gift cards, care packages, cards, letters, gifts of various kinds, Facebook comments, text messages, even help with yard work. It really has been tremendously encouraging and appreciated.

Marilyn has been amazing – Mom, Dad, caregiver, and communications director all at the same time. She is shuttling Keeley and Cam around to school/soccer/baseball, taking care of me, doing all the housework/shopping/etc., coordinating meals, and responding to all the various inquiries about me, most of which seem to come to her. (Reminder: it’s OK to contact me directly to ask how I am doing… I have way more time than she does!) She is such a strong person, and I’m so grateful to have her on this journey with me.

I have never been so prayed for and prayed over, and knowing that has been such an encouragement. I don’t know how all of this is going to turn out, but then again we’re not meant to, are we? I would like to close by quoting from Matthew Henry’s Discourse Concerning Meekness and Quietness of Spirit, which is a commentary on 1 Peter 3:4: “even the ornament of a meek and quiet spirit, which is in the sight of God of great price”. I hope you will take the time to read it. I pray that I, and all of us, may develop and cultivate this kind of spirit in the face of adversity.

[Meekness] is the silent submission of the soul to the providence of God, for that also is the will of God concerning us.

When the events of providence are grievous and afflictive, displeasing to sense, and crossing our secular interests, meekness does not only quiet us under them, but reconciles us to them, and enables us not only to bear but to receive evil, as well as good, at the hand of the Lord; which is the excellent frame that Job argues himself into, Job 2:10.

The language of meekness is that of Eli, 1 Samuel 3:18, “It is the Lord”; and that of David to the same purpose, 2 Samuel 25:25, “Here I am, let him do to me as seems good to Him.” Not only he can do what he will, subscribing to his power, for who can stay his hand? Or he may do what he will, subscribing to his sovereignty, for he gives not account of any of his matters; or he will do what he will, subscribing to his unchangeableness, “for he is in one mind, and who can turn him?” But let him do what he will, subscribing to his wisdom and goodness, as Hezekiah, Isaiah 39:8, “The word of the Lord is good!” Let him do what he will, for he will do what is best; and therefore, if God should refer the matter to me (says the meek and quiet soul), being well assured that he knows what is good for me, better than I do for myself, I would refer it to him again.

When the methods of Providence are dark and intricate, and we are quite at a loss what God is about to do with us; “his way is in the sea, and his path in the great waters, and his footsteps are not known, clouds and darkness are round about him;” a meek and quiet spirit acquiesces in an assurance, that all things shall work together for good to us, if we love God, though we cannot apprehend how or which way. It teaches us to follow God with an implicit faith, as Abraham did, when he went out, not knowing where he went, but knowing very well whom he followed, Hebrews 11:8; and quiets us with this, that though what he does we know not now, yet we shall know hereafter, John 13:7.

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.

Week	M	Tu	W	Th	F
Weeks 1/4/7	E,P	B,E,P	E,P	E,P	E,P
Weeks 2/5/8		B
Weeks 3/6/9		B

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:

Gastrointestinal
The Chemo Head Rush
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 –

Update from Camp Chemo – Day 2

The intoxication has begun.

I am referring, of course, not to drunkenness – that would actually be more fun – but rather reappropriating that word to a more literal meaning – the introduction of toxins into one’s body. That’s really what chemotherapy is. It is therapy, in the sense that its purpose is to heal or at least ameliorate symptoms, but it has little in common with aromatherapy or massage therapy or other a million and one other practices in this therapeutic age that are intended to make us feel better.

Chemotherapy is the intentional introduction of harmful substances into our body, with the intent of harming the cancer cells more. The goal is to do maximum damage to the cancer cells while containing the collateral damage to the healthy parts of your body. Dosages are carefully controlled for this very reason. The idea seems to be to give you as much as you can stand, stopping just short of doing serious and irreversible damage to your healthy cells.

My first day went well. I feel good. I received the E and the P drugs of my BEP regimen (full description here). So far the only thing I feel is a bit of an unpleasant taste in my mouth, and perhaps some ringing in my ears. But my energy level and appetite are pretty good. I was able to go for a walk after I got home yesterday, which felt good after sitting in a chair for 6.5 hours. My doctor said to expect the effect to accumulate over the week, and that the worst days would likely be Sunday and Monday. So I am bracing myself.

I’m getting my infusions at the Ballantyne office of Levine Cancer Institute here in Charlotte. The infusion center is a rectangular room, about 40′ x 25′ in dimension. Along one short wall is the nurses’ station, where the three on duty nurses are seated behind a desk when not actively engaged with a patient. The other 3 walls are where the patient chairs are situated, 15 in all. These are nice, comfortable leather recliners that also have a heating feature which I haven’t tried yet.

The middle of the room has various supplies, including portable stations for the nurses that include a laptop, hand sanitizer, a bracelet scanner, and a few other supplies. With each change of drip, the nurse pulls that over to verify your identity and to record what she’s giving you. When she gives you a chemo drug, they have a policy that two nurses have to verify your identity and the dosage, and make sure there is no chance of making a mistake.

Everything is administered through an IV. In order to facilitate that, I have a port a cath, called a port for short. It’s a small device, about the diameter of a quarter but thicker, which is surgically implanted under your skin, in my case just south of my collarbone on my right side. The port is already tapped into a vein, so for people who need frequent IV treatments, it’s much easier than finding a new vein and setting all that up each day. It also means that the IV lines are connected to the port and not to my arm, which means I have free movement of my arms which is more comfortable.

So that’s what is happening here. I am sitting in a chair most of the day, waiting for these various infusions to complete, and finding ways to pass the time. Each station has a personal TV, which I haven’t availed myself of yet. As long as I have the energy, I hope to spend the time reading, doing puzzles, or writing blog posts. I’m sure the TV time will come.

I’m working on a library book which is really good but really long. It’s called The Power Broker: Robert Moses and the Fall of New York by Robert Caro. Robert Caro is regarded by many as the greatest biographer ever. More people know him, perhaps, for his biographies of Lyndon Johnson, the fifth and final installment of which he is working on now; but his first work was the one I am reading. And not a bad first effort; he won the Pulitzer Prize, and the book was selected by the Modern Library as one of the 100 greatest nonfiction books of the 20th century. It’s a biography of Robert Moses, who I have to admit I have never heard of before coming to this work. He was a public official in New York City from the 1920s through the 1960s who eventually came to be in charge of practically all public works, including highways, parks, and public housing, and wielded an incredible amount of power in that capacity, leaving an indelible legacy on New York’s infrastructure. Whether that legacy should be regarded as positive or negative is a matter of opinion; the author’s can probably be inferred from the subtitle.

Anyway, it’s a fascinating study of the acquisition of power. Moses, an unelected official, was in many ways more powerful than the mayor of New York City and the governor of the state. He acquired that power through a combination of shrewd political maneuvers, manipulation of the media, identification with popular causes, mastery of the inner workings of city government, and an immense personal ability and drive which enabled him to use everything he acquired to deliver results – roads, bridges, parks – that were tremendously popular with people.

It’s a great book, worthy of the accolades, but it delves into the minutiae of municipal government a bit too much for my taste. It would have greater resonance for a New Yorker who would recognize all these public works and the impact they continue to have on the city. Overall, I recommend it. If you’re up for reading an 1,160 page nonfiction book.

The other book I started yesterday, as an audiobook, is The Climb by Anatoli Boukreev. I needed an audiobook to go along with my print book, because for some of my treatments I am wearing cold therapy gloves on my hands which makes me unable to turn pages. I will come back to that in a minute, but let me finish this digression on my reading. The Climb is a book about the infamous 1996 season on Everest in which 12 climbers died. I find this to be a fascinating subject and have read a number of books about it, the best and most memorable of which is Jon Krakauer’s Into Thin Air. Boukreev was a guide for one of the climbing groups, and so his work, like Krakauer’s, is a first-person account of what happened, that was written as a rebuttal of sorts of Krakauer’s account. This whole genre of Dangerous Adventure Nonfiction is one of my favorites, as my wife can attest to as I am constantly searching for another book about shipwrecks, climbing mishaps, nautical disasters, and various other calamities.

To complete the digression, in my morning reading, I’ve been working my way through the edited sermons of Martyn Lloyd-Jones on Paul’s letter to the Romans. I have a time of reading and prayer each morning, and I have evolved a system over the years where I alternate the readings between a “read the Bible through” program in the even-numbered years, and a deeper Biblical study of a book or topic in the odd-numbered years. This year, I decided to embark on this Romans series, which might not seem like a project for an entire year if you’re not familiar with Martyn Lloyd-Jones. But Dr. Lloyd-Jones, who was the minister at Westminster Chapel in London from 1939-1968, was famous for doing incredibly deep, verse-by-verse, sometimes word-by-word studies of New Testament books, and his series on Romans is his best-known. For 13 years, from 1955 to 1968, he preached on Romans every Friday night, starting at the beginning and making it into Chapter 14 (he didn’t even finish!) before he retired from his ministry at Westminster. So I don’t even know how many volumes there in total; I am in the second right now. I think it will take the whole year.

As much as I am a supporter of read-the-Bible-through programs, I always think there is a danger, almost unavoidable, that we become focused on getting through the readings more than actually applying them. Not taking anything away from the value general Biblical knowledge, but it is the application of the Scriptures to our own lives that really makes the difference. The profoundest parts of the Psalms, the gospels, and the New Testament epistles demand to be read slowly, contemplatively, and prayerfully if we are to get maximum benefit. So this is why I alternate reading the Bible through with focusing on deeper works that promote that other kind of slow, contemplative reading. I recommend it.

(End of digression) Getting back to the cancer. Yesterday there was one other guy who, like me, was basically there all day. Other patients with shorter infusions came and went during the day. Not everyone here is being treated for cancer; there are some patients with other blood disorders such as anemia, not related to cancer, who are under the care of a Levine hematologist and are here for an infusion or transfusion.

I call this Camp Chemo because a) I like alliteration and b) it does seem like a day camp. Every day I pack my supplies for the day, including amusements, food, and cold therapy supplies. I’m surrounded by other campers and by camp counselors. At the end of the day, I go home.

I’ve already covered my amusements, in probably too much depth, so let me touch on cold therapy and food. One of the many unpleasant potential side effects of two of my chemo drugs (E and P) is neuropathy, a condition in which nerve damage results in a tingling sensation, loss of feeling, and other disabling effects, first in the fingers and toes, possibly spreading to the hands and feet. There is a school of thought, supported by evidence that is real if not overwhelming, that cold therapy during the E and P infusions can help prevent neuropathy. So I bought some cold therapy gloves and cold packs off of Amazon and am using them during those infusions. It’s really uncomfortable – ever plunged your hands or feet into a bucket of ice water? – but I’m willing to try anything if it will help stave that off. I think I may have overdone it a bit yesterday; I feel like the tips of my pinky fingers haven’t totally recovered their sensation yet. Maybe just a touch of frostbite. So I’m going to try to adjust today.

Regarding food, I’m going to do a separate post on that at some point, but suffice it to say that I have changed my diet significantly, going to a whole foods, mostly vegetarian diet. There is a school of thought that diet has a great deal to do with getting cancer in the first place, and that nutritional changes can actually cure cancer in some cases. Whether or not that is true, it can’t hurt to eat well and try to keep myself in the best possible health, so that’s what I’m trying to do. Since I’m here all day, I need to have something to eat, so I bring it with me in a cooler.

I’m also drinking mass quantities of water. I didn’t keep a record yesterday, but I’m guessing I drank a gallon or so over the course of the day. In addition to the general health benefits, it’s particularly important while taking these drugs, many of which are filtered out of your bloodstream by your kidneys and excreted in urine. The more water you drink, the sooner you get this stuff out of your body. That’s how I look at it. In addition, one of the drugs (the P) is potentially nephrotoxic, meaning toxic to your kidneys. So anything I can do to keep them healthy and functioning well, I’m going to do it.

This is so important that they have us measure and write down our urine output over the course of the day. I don’t like to brag, but I have to say yesterday was pretty impressive. I was disappointed to learn that the practice doesn’t maintain official records. I was convinced that my name would go up on a plaque – “Jake Spencer, 2021, 2.5 liters”. I guess I will have to be immortalized for something else.

It’s about time for me to start my cisplatin infusion, which means I need to put my gloves on. So I’m going to sign off for the day. Thank you all for the continued prayers and good wishes, and excuse my wordiness and digressions. Talk to you next time.

My Cancer: The Basics

What type of cancer do you have?

I have testicular cancer. More specifically, my cancer is called seminoma, to distinguish it from other testicular cancers that are called non-seminomas. The seminoma has spread to my lymph nodes which makes it metastatic seminoma.

How and when were you diagnosed?

In the fall of 2020, I started feeling something like a very subtle pressure in my left testicle. It wasn’t painful or even uncomfortable, and for a while it came and went, but eventually it became more consistent, and I started to notice a significant difference in size.

On November 2, I went to my primary care doctor. There are a number of reasons why testicular swelling can happen, many of which are not serious. She ordered an ultrasound which was performed that same afternoon. Later that day, she called me and told me that I had a mass in my testicle that was consistent with cancer.

Did they do a biopsy to confirm that it was cancer?

No. The standard treatment for a testicular tumor skips the biopsy and goes straight to removal of the testicle. There are several reasons for this: 1) this is a tricky and risky part of the body to biopsy; 2) testicular masses are usually cancer anyway; 3) removal of a testicle is a relatively safe and simple surgery with little in the way of negative impacts or side effects on the patient.

So I underwent an orchiectomy (the fancy name for the removal surgery) on November 11. The surgery was successful, and while I was really sore for the first few days, after that I bounced back pretty quickly.

About 10 days after the surgery, the surgeon called and confirmed that the tumor was malignant (seminoma).

How did they determine that the cancer had spread?

The next step was to determine whether the cancer had metastasized (spread). In the best-case scenario, there is no metastasis and therefore no need for further treatment. In late November, I went in for a CT scan. The results of the CT scan indicated two enlarged periaortic lymph nodes that were described by the radiologist as indicative of metastasis.

What stage is your cancer?

Testicular cancer has three stages. Stage I is when there is no evidence of metastasis. Stage II is when there is metastasis to the lymph nodes. Stage 3 is when there is metastasis beyond the lymph nodes. Stages II and III are further broken down into substages, which are determined based on size of the tumors, markers that are detectable in the bloodstream, and other factors.

I am Stage IIa. This is the earliest stage of metastatic seminoma.

Did the doctors recommend treatment right away?

No. My oncologist recommended a biopsy of the lymph nodes in order to confirm that the enlargement was due to cancer. He said there was a 20-30% chance that the enlargement could be benign, in which case they would be treating me for nothing.

The challenge with a biopsy is that these particular lymph nodes are difficult to get to with a needle, without hitting something important. Like your kidneys, your aorta… important stuff. Plan A was to do a traditional biopsy with a very long needle, but the radiologist determined that to be too risky. Plan B was to perform the biopsy via an endoscopic ultrasound. This is a procedure where they put an endoscope down your throat and through your esophagus into your stomach and small intestine, using ultrasound technology to look around your abdomen. If they can find the spot, the endoscope has a needle that can collect a biopsy.

This procedure was performed on January 25. A few days later, the doctor called and confirmed that the biopsy showed metastatic seminoma in my lymph nodes.

How is Stage IIa seminoma treated?

Seminomas are among the most treatable and curable cancers. They respond well to both radiation and chemotherapy. Radiation is a localized therapy, meaning it is focused on one particular spot, and is therefore used only in early stage metastasis. Later stages are treated with chemotherapy.

Historically with Stage IIa seminoma, radiation has been used more frequently, but my doctors gave me a choice between radiation and chemotherapy. After much deliberation, I chose chemotherapy.

What is your prognosis?

According to this article at cancer.org, Stage II testicular cancers in general have a 5-year survival rate of 96%. The treatments are highly effective in eliminating the cancer. Like other cancers, seminoma can come back, but many seminoma patients never have a recurrence and go on to live normal lives after their treatment.

What kind of chemotherapy regimen are you doing?

I am doing 3 cycles of BEP (bleomycin/etoposide/cisplatin). Each cycle lasts 3 weeks, so a total of 9 weeks. All the drugs are given via an intravenous infusion.

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.

Week	M	Tu	W	Th	F
Weeks 1/4/7	E,P	B,E,P	E,P	E,P	E,P
Weeks 2/5/8		B
Weeks 3/6/9		B

When do you start your chemo?

On Monday, February 22, 2021.

Are you experiencing any symptoms from the cancer?

No. As of this writing in mid-February 2021, I feel totally normal.