Please let me tell you about my feet

From Our Neuropathy Friends Facebook page

First of all, I'll say straight out that nobody wants to hear about your feet (or mine) unless they suffer from the same condition.

For example, if someone asks how you are, and you say, "My feet are killing me!" you're probably not going to get a good response if their feet are fine. If you say that your plantar fasciitis is acting up, and they've had the same infuriating ailment, you could probably talk for a long time. Similarly, if you say your neuropathy is driving you crazy and you're talking to a fellow sufferer, you'll be good to go. If not it is just not going to sound that interesting, or that believable for that matter, to try to explain to someone that your feet can be numb and painful at the same time, that you feel like you're walking on rough sand, or on little nails, or that your feet have an electric current in them. Or that, tantalizingly, it will get better but then it will sneak up on you again. 

The 4,325 members of the Facebook group Our Neuropathy Friends know what it's all about. I don't post much, but I did the other day, and I got some helpful advice, and support, which is also important. Of course the remedies are all over the place because each person's experience is individual. Some have found relief from CBD. I've also checked in to a group called CBD Oil Users, with 161,860 members. 

I take1,500 milligrams of gabapentin (Neurontin) daily. It takes the edge off, but the results are not great, because there always is, at minimum, a buzz. I get acupuncture and have been using some CBD. (Short for Cannabidiol, CBD is the non-psychoactive component of the cannabis plant, not the part that gets you high, tetrahydrocannabinol (THC). 

Sometimes I think it's helping, other times, I think not. I'm encouraged, though, because studies have shown that cannabinoids can alleviate neuropathic pain. I recently met some people who are happy with its benefits for themselves and for their dogs. In case you haven't noticed, you can get CBD all over the place, even in the mall. Where I'm getting it, and how I'm using it, is material for another post.

With the latest flareups, I decided it was time to check in Dr. Ugonma  Chukwueke, (pronounced Chew-kwe-kee) the Dana-Farber neurologist I saw a couple of years ago. I left a message and was supposed to get a call back but didn't. Melissa nudged. I got a call back from a scheduler who said Dr. Chukwueke is not the person for me. Neuropathy like mine, resulting from chemotherapy, is not her expertise. She specializes in neuro-oncology, or neurologic complications of cancer, for people who have cancer, not people who have chronic conditions resulting from treatment. I wondered then, why I got sent to her in the first place. (Picture eye roll.)

In any case, I now have an appointment for next Friday. It's at 9:30 a.m., which is not so great. But the doctor, David Pilgrim, sounds great. He has excellent patient reviews and the impressive title of chief, clinical neurology, Brigham and Women's Faulkner Hospital, and instructor, Harvard Medical School.

 In addition to discussing alternative treatments, I'll bring up the possibility of switching to Lyrica (pregabalin.) As I wrote in this story, both gapabentin and pregabalin have side effects. I don't think I'm taking the highest dose of gabapentin, but I've been afraid to take too much more, for the reasons the patients discuss in the story.

Lingering side effect from chemo a real pain

The acupuncturist said yesterday that it's good that the needles she put in the soles of my feet made me jump, because people with really bad neuropathy don't feel anything.

I'm not sure if that was encouraging or not because I'm upset that instead of getting better, the neuropathy in my feet has gotten worse.

She said it could be the heat, so I'm hoping that's all it is. Out of all the things that they can do for chemotherapy side effects, curing neuropathy is one of the most elusive. A doctor in the hospital told me to try cocoa butter. I don't think that helped. The drugs that sort of work are intended for other problems, such as the gabapentin (Neurontin), which is an anti-seizure medication originally intended to help manage epilepsy but which is also used for nerve pain and other problems.

Dana-Farber graphic

It is called CIPN, chemotherapy-induced peripheral neuropathy. Nerve damage to my feet. I don't think that in the past almost eight years they have ever felt totally normal. At best I have a little tingling. Sometimes people say I'm walking gingerly, and that must be the reason. I can think of at least one person who asked, "Why are you walking so funny?" and it was actually a doctor in my family who knows what I have been through. This I don't appreciate. I got nervous when I looked it up and saw that it can get so bad as to interfere with activity.

Interestingly, like a person who loses his or her (just can't say their, sorry, even though it's supposedly OK) stutter when singing, I don't have it that much when I run around.

I originally took three Neurontin a day but cut back to two when it seemed to get somewhat better. I have an email in to Melissa to see if she wants me to go back to three or try something else. One time I tried to go off in an effort to cut back on meds, and once it got out of my system I started waking up at night with sharp knife-like pain in the bottom of my feet. I went back on the drug. Another time when I ran out for a few days, I was late on picking up the refill because I thought that since my feet were OK it didn't matter that much.

I started to feel AWFUL. My stomach hurt, my head ached and I felt depressed. It occurred to me to look up gabapentin withdrawal symptoms and those and more were there, including even suicidal thought. I realized what a strong drug it is.

The list of integrative therapies is super long and kind of confusing.

I'm going to wait to hear back or maybe get some cocoa butter and try it again.

Walking the way I walk

Someone was saying I walk funny: stiffly and almost like I am on shards and trying to hold myself together.

People mention this frequently, mostly out of concern as in "Are you all right?" but sometimes it sounds critical, which is probably just my thing, but it does occasionally come out in a tone that makes the question sound like, "What's the matter with you?"

I told Joe and he said let that person have leukemia three times (not to mention the coma, which I just did, thereby engaging in a pet peeve of mine by saying "not to mention" when I just mentioned it) and I am much better than I was a couple of years ago.

Someone who I briefly knew said I exercise too much and that he knew I was trying to keep my girlish figure, but still. Actually I am lucky to have my father's metabolism and so that although with age it is a little harder, my "girlish figure" (what a putdown) takes care of itself. This person said my gait was off. So it is. But did I ask?

I do the work like fitness classes because I have to do it to maintain my strength and the balance that I have, which is not the same as it was before cancer but not nearly as bad as shortly after my transplant when by all accounts I walked like a Gumby doll and people were afraid that I would fall over, which I frequently did.

 Maybe some day I will like these classes, but at this point they are a chore, although the Pilates class  at the Hampshire Regional YMCA is just perfect, and I wish that it was offered more frequently, and also the yoga class the Justine teaches at Serenity Yoga is wonderful too, and she always makes sure that I get a wall.

Did I say that the other day I squatted to get a pot out of the low cabinet and toppled over onto the tiled kitchen floor? Did I say that I lost my balance in my bathroom and scraped my arm? Did I say that even with the Neurontin, the neuropathy from chemotherapy causes me to never totally feel my feet on the ground?

I hate to think of what I would be like without all the exercising I do.

When I first got back to tennis (again), I was not so great due to these problems and also the weakness in my quads from prednisone and my lower red blood cell count.

But now that is normal and my endurance is good.  Now when I am on a tennis court, the tentativeness goes away, and after we play for our allotted time I could just keep going.

It is like someone with a stutter who sings, and that stutter goes away.

If only I could carry a tennis court around with me...

The trouble with tapering

It is one thing to set out to cut back on my drugs that cause drowsiness, and quite another to accomplish it.

I thought I was doing OK cutting back on my Neurontin (gabapentin) from 1200 milligrams a day to 600, but it has snuck up on me, and I'm afraid I have to go back up. There must have been enough in my system for me not to notice the change, until last night when I woke up and realized I could not feel one of my feet. It was not your usual case of pins and needles. It was basically numb.

Also tonight I am noticing that my feet are both tingling and numb. They are never totally fine, but at least on the higher dose they were better than this. Dr. Alyea said I could experiment, so I think that I will start by adding one 300 mg pill instead of two.

I have tools for dealing with fatigue while driving – coffee, energy bars, fruit, and my favorite, Peanut M&Ms – not good for the condition of my car but good enough to stay awake, at least until I can pull over if I have to.

But if I can't feel my feet there is not much I can do about all my activities, and most importantly, keeping my balance. The typical dosage for Neurontin is up to 1,800 mgs. a day, so at least I will still be under that.

As I said previously, I have an appointment next week to see a new dermatologist about the graft vs. host on new areas of my skin, and I am also going to book with Melissa to check in and look at my medication list.

I could be wrong, but my squamous cell radar tells me that a spot near my eye might need to be biopsied. Each time Dr. Lin freezes it off, it comes right back. I emailed her asking if she wants the new dermatologist to take care of a possible biopsy but haven't heard back.

So far so good on the prednisone taper. Nine days in, and I am no more crazy than usual.

Needles: the good kind

I had almost forgotten that I had signed up for free acupuncture through the Cancer Connection in Northampton, so I was surprised when the phone rang and it was acupuncturist Laurel Turk saying I had come to the top of the list.

Since the only time that she does this in Northampton is the same day I volunteer at the Literacy Project, I went to her office in Sunderland earlier this week. There was therapeutic value just in driving along beautiful Route 47 just as the leaves were beginning to turn.

 I previously had acupuncture done at Dana-Farber's Zakim Center for Integrative Therapies  and also in Amherst by a woman who is also an herbalist. The session at the Zakim Center was definitely calming, causing me to immediately fall asleep. Same thing for the sessions in Amherst. These were  complemented with Chinese herbal medicine to balance and strengthen my system after my first bone marrow transplant.

I took home a bag full of raw herbs that I boiled in my spaghetti pot and drank like a tea. It tasted and smelled horrible. The whole house stunk. My kids said it looked like the acupuncturist had just gone out behind her house and collected pieces of bark, and they would kill me if I did not stop. I am not doubting Chinese medicine, but it was not my cup of tea at that time.

At the session last week, I said I primarily wanted to address the neuropathy in my feet. I would love to get off that drug Neurontin, with its side effects of dizziness and drowsiness. There are many other imbalances in my body to address, including the graft vs. host in my liver and the tendency of squamous cell cancers to pop up on my skin.

My feet were the only place the needles hurt. The rest went in easily, including a couple in my head to calm my runaway mind. She also used a moxa stick, in which dried leaves of the Chinese herb mugwart are lit and applied to the needles, intensifying their benefits.

With each needle, I felt more and more like I was in a warm bath.

It was so much better than the needles that usually poke me.

I am happy to say I get five more sessions. Thank goodness for places like the Cancer Connection that offer services not just to those in crisis but also to those dealing with the long-term effects of cancer treatment.

On pins and needles

I tried a little experiment a couple of days ago to see if I could go down from four Neurontin a day to two.

 I've done this before, with permission, because I never tinker with anything on my own. I wanted to see if the neuropathy in my feet might be getting better on its own. Also then I would only need to take 14 pills in the morning instead of 15. Big difference, right? I guess that psychologically there is a benefit to taking less medicine, however small the decrease.

Well, it didn't work last time, and it didn't work this time either. Last night I was upstairs, just about to get into bed, when I got an attack of pins and needles in my feet. I thought I might just ignore it, but I know that the last time I did that, the pins and needles quickly turned into sharp knives.

Maddie was all "tucked in" in her bed in my room when I headed for the door to go downstairs where the pills are. She jumped up, thinking (I guess) that there was going to be some late-night action. I told her to stay, went downstairs, found the pill and popped it. The pins and needles diminished pretty quickly. So much for that experiment.

Good day sunshine

I love the moment when you first wake up, between dream and day, floating on a cloud. The room is cold and you're warm beneath the quilts, the sun seeping in from under the shades.

Even better, the dog has slept in and sticks her cold nose in your face AFTER 8 a.m. We get up and go downstairs. I love the way they look so funny scrambling down. The dog food has spilled, and I throw it out on the floor. She runs around and gobbles it up, eating in eight seconds instead of four. Very entertaining.

As opposed to yesterday, my feet have not woken me up. I guess that's the sunny way to look at the fact that my neuropathy – technically called chemotherapy induced peripheral neuropathy  – returned after I stopped taking Neurontin. I wanted to see if it had gone away, but alas, within about a week it was back. Yesterday I woke up to sharp pins piercing my feet.

I popped two pills and felt better pretty quickly.

I looked it up and found that the nerve pain is sometimes so severe that patients need to take a break during chemotherapy. The pain can last for days or months or even indefinitely. There isn't a proven treatment. Neurontin, which is used for nerve disorders, takes the edge off. One doctor at Dana-Farber said he thought cocoa butter helped. (It didn't.)

All drugs have side effects, of course, so I really wanted to stop the pills. I read that acupuncture and massage can help, so I might look into that.

Even with the drug, my feet are sometimes not all there.

Using the "N" card, (for neuropathy instead of the "C" card for cancer), could come in handy.

Can't do a yoga pose? I can't feel my feet! (Which is actually often the case, although I don't say it.)

Can't run for the tennis ball? My feet are numb!

I am trying to make a joke out of it, but it's not always that funny. Well at least for now, there is a solution, and I can proceed with my sunny day.

Countdown to a birthday

God willing and the creeks don't rise, in seven days I will be 4 years old.

In other words, it will be four years from my transplant on Jan. 31, 2009 – my re-birthday.

Maybe my toddler friends and I should get together and celebrate. PJ would have to come from New York and Ann from New Orleans. We could have a food fight or, more appropriately, give thanks to our donors, those generous souls who gave us another chance.

Meanwhile, I spoke too soon when I wrote in my last post that I was all better. I have gotten sick twice then and am now guaging good days and bad days according to whether I throw up or not. I am still waiting for results on the biopsy done during my endoscopy.

One way I can tell I'm not quite right is that I haven't had coffee in two days!

I take Ativan for nausea...and then end up on the couch and in my head. Yesterday I thought I would at least take Maddie for a walk. It is so cold out that we didn't go far, plus she was bad and wouldn't come when called. I turn the heat way down at night, and at least she redeemed herself this morning by sitting close to me on the couch and sharing some of her natural heat while the house warmed up.

I did go to George's tennis clinic last night. We rotated three against one, and I thought I was pretty smart to skip the rotation where I was alone. George kept telling me to move my feet. Always excellent advice and something I am extra aware of after watching the Australian Open. On the other hand I was afraid of jostling my insides. I ran to the bathroom, got sick, and then, truth be told, finished out the clinic.

I might go to restorative yoga tonight. I figure I can't possibly get sick there, when all you do is basically lie around. I was skeptical the one time I did it, but it actually was very restorative.

On another note, I stopped taking Neurontin, which I have been on for a long time to control the neuropathy in my feet. I wanted to see if the tingling and prickly feeling had gone away on its own, but I'm sorry to say it is back. The Neurontin never made it totally go away, but it did dull the symptoms. Now I am waking up to needles in my feet. Melissa said it's optional whether I go back on or not. It's always good to get rid of one more pill and and one more set of side effects, but feeling like you're walking on pins and needles is no fun either. I think I'm going to stick it out a little longer, and if it gets to be too much I'll go back on.

Well, at least the pill is a nice yellow color and adds variety to the colors in my pill box.

Neuropthy, revisited

My experiment with lowering the dose of Neurontin used to treat my neuropathy lasted about two days.

I'd be taking a walk and get a shooting pain in one of my feet, a pain so sharp that I had to cry out. Even with the higher dose, the feeling in my feet ranges from pins and needles to barely any feeling at all. Sometimes my feet feel like they're made of wood, and I massage them to wake them up.

I've been told that it's hard to treat. It might wear off, but it's been three years, so this might be as good as it gets. And of course I am lucky that I function well. Who knows, maybe the numbness serves as a cushion that makes it easier to run?

I'm revisiting the subject because it made me think about how many people must have similar side effects from chemotherapy – not the major stuff, but still enough to create a bothersome background noise.

You're alive and you're doing fine, which is of course the most important thing. I guess you just learn to live with this other stuff, but sometimes it can be wearying.

Imagine this:

"How are you?"

"I'm fine but my feet are driving me crazy."

"Uh, sorry to hear that." Thought bubble: "Why are you telling me about your feet?"

You could substitute many other things that are on the annoyance level...and that nobody really wants to hear about.

Peripheral neuropathy, caused by damage to the peripheral nerve fibers, has many causes other than chemotherapy. I was surprised when looking into the topic again on the Internet to find a site called The Neuropathy Association. Apparently neuropathy can be severe. The association has even created a network of support groups. Who knew?

On a lighter foot-note, the other day I had a momentary panic after I went running and took off my socks.

I looked down at the bottom of one foot and saw red...lots of blood!

Or so I thought. Then I looked again and remembered that I was wearing white socks with the brand name stitched near the bottom in red. So I was seeing the inside of the stitching.

I don't even know what I was worried about, probably a low-platelet moment.

I assume other cancer survivors have these panicky moments where they jump to judgment based on some silly misperception.

You just have to laugh when you realize your mind has played a joke on itself.

Critter capture, swimming pool serenade

The critter turned out to be a squirrel.

No big deal. I was actually happy to see it and discover that it was not a rat. It got caught in the trap that was in the living room near the beam with the gap around it. It was turning in circles, rattling the bars of its prison. I went into the kitchen for a few minutes, and when I returned, it had curled up in the back and gone to sleep.

I put the trap on the porch, and the critter control guy said he'd come get it later and release the squirrel away from here. He's going to come back and fill in the gap around the beam.

It was pouring yesterday, too nasty to get a good walk in with Maddie. My knees and feet still hurt, which is discouraging. I am going to increase my Neurontin dose, which hopefully will help with the neuropathy, but that's only part of my problem. It's been more than a week since I overdid it on the treadmill, and although I'm walking better, I'm still nowhere near being able to run or play tennis.

So at the Y yesterday, I did a combination of water jogging and laps. Nobody was in the pool, and the lifeguard was just sitting there with obviously nothing to do. I noticed he had a ukelele by his side, and I asked if he would play it to ease the boredom of water jogging. He picked it up and began to play as I slid into the water. He was quite good.

A friend who had returned from an island vacation talked the other night about the warm water and temperatures. I have to admit I was a little jealous. But as the lifeguard played his beautiful music and the small waves lapped around me, my pain dissolved, and I had to smile.

I had driven only about 10 miles to Holyoke, but if I closed my eyes, I could be near a warm beach, serenaded as I swam.

The lifeguard played the whole time I was in the water. On my way out I thanked him, ready to face the dreary day.