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.