It really was not part of my ambition to get Diffuse Large B-Cell Non-Hodgkins Lymphoma, but I sure did. It’s a kind of cancer – yikes – that affects the proper production of blood cells. Not good.
So yeah, I’d rather not have it, but wise acquaintances have taught me to make the best of things so that’s what I’m trying to do. Besides, for most people the prognosis for lymphoma is pretty good.
It started a few months ago with me just not feeling so hot. I tried to ignore it, as I am wont to do, but there was just no denying it. A blood test confirmed that yes, things were amiss indeed, and what followed were several interesting and eventful weeks in the hospital.
Having been under excellent care I was feeling worlds better when Marybeth picked me up from the hospital and took me home. First, however, she took me up Mill Mountain -Remember I hadn’t been outside in weeks. I think it was the happiest day of my life.
Soon after that my definitive lymphoma treatment commenced, which primarily involves chemotherapy. Before this personal experience I had only a vague understanding of the process; when I heard that someone was undergoing it I nodded my head in an affirmative, understanding way, when in actuality I was fairly clueless about it all. I’m not anymore. I’ve accumulated some real up-close and personal knowledge. Perhaps sharing some of what I’ve learned will help others who find themselves or a friend or loved one facing a similar medical surprise.
So listen up. My tentative treatment regimen includes six “chemo” cycles. Each cycle consists of one week of 24-hour per day infusion followed by two weeks to recover. So altogether the six treatment cycles span 18 weeks. This program typically results in persuading the cancer to go into remission, and it’s managed from there. Curves and bumps in the road may make the treatment stretch further, of course.
I would loosely define chemotherapy as the process of introducing various slightly toxic agents to one’s bloodstream to kill offending cancer cells. The agents used are non-selective. That means that perfectly good cells, not just cancerous cells, are destroyed in the process too. Sorry, that’s just the nature of the chemotherapy game.
So, the idea is to kill all the cancerous cells – to “clear the slate” or “reboot the system” – with the hope that only good cells will be produced the next time around. It might sound a little crazy, but keep in mind that lots of highly intelligent people have worked with this over decades, fine tuning it all the time, and the treatment can be highly successful.
In the case of lymphoma the basic problem is that the blood cells produced in the bone marrow – platelets and white blood cells like eosinophils and neutrophils and their ilk – are dysfunctional. They’re misshapen and deformed, unable to do their important jobs. So, again, the goal of the chemo is to help the bone marrow return to producing only healthy blood cells.
For my chemo weeks I report to the cancer center Monday morning and the kind nurse takes a blood sample and records my vital signs and ushers me to what I call “the gallery.” It consists of an open room with about 18 comfy recliner chairs about four feet apart from each other. The patients in the room represent many different kinds of cancer and varying stages of their treatment. They come from all around the region. Typically I see different folks every time.
You might think that the atmosphere is grim, but in my experience it’s a cheerful place. Some of the folks are quiet, some napping, some reading. Often I’ll find myself striking up a conversation with someone next to me. Besides taking care of the professional business at hand, the excellent nurses offer warm blankets, pillows, snacks and drinks.
The infusion of the chemo agents is generally easy and painless too. The medicine enters the body through a chest port, which is placed in the patient sometime prior to commencement of the treatment. A Power Port, as the state-of-the-art ones are called, sure makes the process easier and much simpler than the traditional IV method. We are lucky to have such technology available.
So, the nurse will get the chemo juices flowing through the port while the patient relaxes. Depending on the circumstance the process could take from one to five or six hours, then, in my case anyway, I’m sent home with a portable, battery-powered infusion pump in a small pack which is strapped around my waist. The pump delivers chemo agents 24 hours a day through a tube fed into the chest port. It takes no intervention from me. The infusion time length is adjusted by the nurse to finish about when I’m appointed to arrive back at the cancer center the next day.
One may or may not have additional chemo delivered while in the gallery on a given day of the chemo week. It may be just a pump switch, which involves popping in a new bag of chemo and fresh batteries and returning home. Yes, the reliable, portable pump technology – like the Power Port – has revolutionized chemotherapy. It wasn’t long ago when much of the treatment was by necessity delivered in the hospital as an in-patient process. It’s nice to get to go home everyday, even with the minor inconveniences of wearing the pump.
This being a sophisticated business, there are lots of additional details about chemotherapy besides running the chemo agents themselves. For instance the patient will have a few varied medications prescribed to take throughout the treatment, and some non-chemo agents will be infused along the way too, such as effective anti-nausea potions (yay!) and benedryl, to dull untoward reactions to some of the big guns chemo agents such as Rituxan. The timing of it all is very important too; there must be enough time for cell recovery between chemo weeks, but not too much to allow for start of relapse.
How about side effects to the chemo? You may have heard that they can be miserable. Well, in my experience they aren’t too bad and are actually quite manageable. Thankfully, one of the biggies – nausea – has been reigned in significantly in recent years. Like I mentioned, a few long-acting anti-nausea agents are typically infused at the beginning of the chemo week and at the end of it. Each dose can be expected to last three to five days, and in my limited experience… they work!
While I have not experienced nausea from my chemo, I have become familiar with other common side effects such as disruption of my sense of taste – very strange – significant fatigue, slight dizziness, constipation, and hair loss. None of these are intolerable, thankfully, and some of them are only noticeable for a few days of each chemo cycle, usually during the time right after the chemo infusion week. It’s really not so bad!
It’s recommended that one keeps physically active during the chemo process; it is known to not only make the chemo more effective but to reduce the severity of side effects. Being a restless soul unable to sit still for long anyway, I kept active as I felt able. I walked about two hours daily, paddle-boarded a few times a week, and did the odd grass mowing and chainsawing too. Afternoon naps were often a part of my daily routine during my lymphoma chemo mischief.
Chemo treatment can be a wild ride, because sometimes it seems like it just keeps coming at you. By the time I had kind of recovered from one chemo cycle here came another one. That’s the nature of it. The timing of it all is critical; there can’t be too much time between treatments. Thankfully it’s not beyond what one can handle and before I knew it the months and the complex course of treatment were in my rear view mirror.
Bonus: Some chemo treatment regimens will include in-hospital stays. I had three such episodes, for high-dose methotrexate infusion, and each one required three to five days in the hospital. Thankfully those stays were easy and no big deal at all; the doctors and staff took good care of me, as usual.
Somewhat surprisingly, a lot of good has come from my generally unwelcome lymphoma experience. Happy and heartwarming stuff occurred for me during those months of chemo, goodness well beyond the therapeutic effects on my physical body. My mind was strengthened too, and my appreciation for the simple things, and life itself, magnified. I’ve been incisively reminded of the importance of relationships, fundamentally probably the most important aspect of our lives.
Chemotherapy. What’s it all about? Ultimately, we needn’t worry about the details; we need only to let those administrating it, and the chemo itself, do their thing. Perhaps us patients should just follow the advice that my physician father-in-law gave me: “Keep your chin up and let the juices flow.”
– Johnny Robinson
