I am not a doctor. This article reflects my personal experience and is filled with the results of my personal research. Please do not take medication without the supervision of a doctor. Please do be involved in your own recovery. You are the one most motivated to solve your own problems. Above all, be patient and compassionate with yourself. Your body’s been through the wringer and you’re still here. That’s a miracle.
Chemotherapy: The Gift that Keeps on Giving
Depending on your protocol, you may have lingering side effects. These may include peripheral neuropathy (pins, needles, numbness, and motor problems in your hands, feet, and perhaps your legs), cognitive issues (“chemo-brain”), adrenal insufficiency (manifesting as fatigue, myalgia, etc.), and headaches. Your mileage may vary.
The neuropathy appears to be associated with mitochondria damaged by anti-microtubule agents like Vincristine. There are supplements that allegedly increase mitochondrial efficiency and thus reduce symptoms. These supplements (Alpha Lipoic Acid, L-Carnitine, and Coenzyme Q10) can be a decent short term option while you wait for your nerves to regenerate. Most chemo-induced neuropathy resolves within a year of receiving your last dose of chemotherapy. The older you are, the less likely you are to see a full recovery. When I asked her, my neurologist told me that there is nothing you can do to speed nerve regeneration, however there are some supplements that may help (in rat models at least), notably benfotiamine and methyl B12 (both obscure B vitamins you won’t find in typical over-the-counter supplements.) While most people make nearly a full recovery in the first year, I’ve spoken to at least one who continued to see improvement for several years. Be patient and don’t lose hope.
Some people respond well to acupuncture, moxa, and other complimentary therapies. If you get acupuncture, make sure your absolute neutrophil count (ANC) is high enough first. I did it when my ANC was 200 and the places where they stuck me became infected with staph! This, in spite of the fact that they disinfected the sites first and used sterile needles! Obviously, check in with your doctor (or at least look at your labs) before you employ acupuncture or herbs.
Cognitive issues can be caused by a number of drugs. Cytoxan is an often cited culprit. Again, the effects diminish with time. It may be difficult to distinguish chemo-induced cognitive changes from those induced by the emotional changes that you’ve likely experienced as part of your ordeal. Again, be patient. Counseling is never a bad idea.
Adrenal insufficiency can come from heavy use of Prednisone and Dexamethasone – or just from the stress of the entire ordeal. It takes time for adrenals to recover. If you were on cortical steroids of any kind, get an adrenal test kit through your doctor (like this one) and test your cortisol levels several times during a single day. If your levels don’t spike in the morning, or if the concentration of cortisol in your saliva is uniformly depressed, ask your doctor if you can take hydrocortisone, starting with a sufficient dose to alleviate symptoms, then stepping down over a period of weeks to months. This will, in theory, give your adrenals time to recover. It’s not a guarantee, of course. Warning: “spot checking” your cortisol level at a single point in time via a blood or other test may not reveal problems like a failure to spike in the morning. (Cortisol levels are supposed to spike right after you wake up and drop off throughout the day.)
Headaches can be symptomatic of adrenal insufficiency, neurological, or psychosomatic. It doesn’t really matter. They hurt. Fortunately, there are options that usually yield relief and that can enable you to function better, notably non-steroidal anti-inflammatory drugs like ibuprofen, aspirin, Tylenol, naproxen, or in severe cases, narcotics. It is likely that the headaches will diminish with time.
Regular exercise both during and after chemotherapy will help with your outlook and with your recovery. It may seem like you don’t have the energy to even tie your shoes let alone go running. Certainly you should be compassionate with yourself, but at least try to do something every day.
Scoping out funeral plots? Planning your estate? Fantasizing about how your children are going to grow up without their mom or dad? Wondering if anyone will miss you?
For God’s sake, stop.
Forget planning for the worst. If you must, let someone else pick out your pine box. What’s the worst that will happen? You’ll get buried in a clown suit with a rubber nose?
Obviously, there are things we all should tend to, whether we’re one of the few lucky enough to have a regular relationship with an oncologist or not. At the very least, make an effort to limit the amount of depressing paperwork that you deal with each week, even if it means you don’t get to everything.
It really is better to put your efforts toward wringing as much out of life as you can – and to hell with the consequences! You’re not dead yet. So why not focus on healing?
Your body is an amazing machine. It will heal itself magnificently if you give it half a chance. The way you do that is by getting out of its way – and by remembering to be grateful for every inch of life you regain, every breath of air, and every moment of peace. Feelings of gratitude act as an opiate. They will calm your fears and dull both your physical pain and your mental anguish.
It doesn’t matter if you feel like you have a “right” to be morose. Negative feelings are NOT helpful. When you’re immersed in negativity, you’re spending your energy manufacturing adrenaline and down regulating your immune system instead of rebuilding nerves, lymphocytes, and epithelial cells.
Find a way to quiet the chatter in your mind. Stare at a wall. Do whatever it takes but shut the self talk off so your brain can go back to doing what it needs to do to make you whole again. There are many ways to do this. They’ve been used for thousands of years by all the various faiths. Why not exploit the tools they have to offer? You don’t have to accept anything that you don’t like, but by all means use the tools:contemplative prayer, meditation, yoga, religious texts, self-help books – whatever it takes. The process of seeking out the larger life lesson embedded in your recent experience can help distract you from your suffering while you heal.
Accept your situation. Quiet your mind. Look forward. Trust your body. Be grateful.
Surround yourself with loving and supportive people. Understand that they’re going to say trite things because they’re uncomfortable. It might also be difficult for them to accept that there’s not always anything they can do to relieve your suffering. This might drive them away. Forgive them for that.
Be open to help from whoever is willing to give it. The people who you expect to show up may not be the ones that actually do.
Ask for help when you need it. If the first person you ask says no, ask someone else.
Be engaged in communal activities. Go to church/temple, take a yoga or Tai Chi class, or maybe just wheel down to the community room for a game of penny poker. Life is about being connected. Connected people live longer.