Side Effects: Can You Say Peripheral Neuropathy?

I have been relatively lucky when it comes to side effects from chemotherapy.  Although I’ve had the expected big ones – hair loss, low red and white blood cell and platelet counts, and some intestinal troubles, I have been fortunate to be treated in a time when there are very effective anti-nausea drugs.  These are delivered to me through an IV on the same day that I receive my chemo treatments. I consider myself doubly lucky because some patients still experience this most unpleasant side effect despite the use of these meds.  I have also been spared the intense fatigue I hear other people speak of. Some patients write that they can barely lift a finger without needing a rest and they spend much of their time sleeping. Yet I have had to take only a few naps along the way during the 16 weeks since I started this regimen. That is not to say that I haven’t had my share of side effects, but they have been manageable and relatively minor, and most have lasted for only a few days.  Below are a few of the more annoying or persistent ones.

Peripheral Neuropathy:  Until this last round, I’ve only had brief encounters with numbness and tingling in my fingers and toes, or peripheral neuropathy. In rare cases, once you get it, it never goes away, but my experience with it has been fleeting, until now. Round 5 brought on a longer lasting and more significant case of numbness.  I was not able to feel my big toes for a few days, and haven’t been able to feel any sensation in my left thumb for quite a bit longer!  It is truly an odd sensation to touch or poke your thumb and not feel a thing!  I’m confident this will pass.  In the meantime, caution is required when using knives or dealing with hot items because the nerve endings can’t sense and communicate to our brains that we should let go of a hot skillet, or whatever may cause a burn.

Taste:  My sense of taste has come and gone. After each round of chemo I go through a period of 4-5 days when things are tasteless or downright yucky, and I resort to a very bland diet.  During these periods, chocolate doesn’t taste like chocolate at all and is totally wasted on me.  This was the first time in my life that I tasted one M&M and I didn’t even want another – a clear indication that all was not well with my taste buds.  The only foods that are palatable during these taste bud blahs are those with that special quality the Japanese call “umami” or a savory taste.  Umami is now considered by many to be the fifth basic taste, along with sweet, sour, bitter and salty.  Somehow it can break through the blandness and provide some satisfaction.  So when the taste buds go south, I switch from turkey sandwiches to roast beef. We also make a wonderful slow cooker stew with oven-roasted beef, barley and roasted root vegetables. This experience makes me think of my poor mother, who, in her later years lost her sense of smell, and therefore her sense of taste. She found it really hard to bring herself to eat much and she became a little slip of a thing. Food, often the centerpiece of family events, gave her no pleasure.

Tears:  I have cried only a couple of times since learning that I have cancer, and I’m not even sure those tears were related to my own situation.  However, I now shed tears like nobody’s business, especially for the first few hours of the day. The doctor feels that one of the two chemo drugs I receive is the culprit, causing clogged tear ducts. The odd thing with this side effect is that it, like my neuropathy, is a very one-sided problem. My tearing is pretty much restricted to the right eye, and causes some significant vision problems. It is perhaps the most annoying of my side effects. The past couple of days it has been an all day, all night event and I get tired of dabbing at my eye and face as the water overflows onto and down my cheek. After awhile it almost makes me want to cry for real!

Skin: Winter is never a friend to my skin, and despite my best efforts to keep the house humidified, and to lather myself with the dermatologist recommended skin cream, Cetaphil, it is still an uphill battle. Add to that the fact that chemotherapy causes some strange changes to the skin on my fingers and I have a bigger problem than usual. The skin at the tips of my fingers splits and I have had as many as four bandaged digits at time. Talk about a decline in my typing accuracy!  It’s a real challenge to hit the right keys with bulky fingertip bandages on. This nuisance, and sometimes-painful side effect starts with a hypersensitivity to heat. Washing my hands in hot water burns for a couple of days before that sensitivity abates. Then the skin on the affected digits hardens, reminding me of elephant skin. No amount of moisturizing softens it up, and ultimately it starts to split and peel, like an insect shedding it exoskeleton. My thumb looks like a patchwork of layers at the moment.

So, although I consider myself quite fortunate, I will be most grateful when these all passes. It will be good to cry only when I’m experiencing emotions that warrant it!

Aaahhh, That's Better!

What a difference a day makes!  I started to feel better yesterday after a bit of a shaky start.  I called Shannon, my nurse, and consulted with her on a number of issues.  She provided reassurance and gave me some good direction and advice.  With her backing, I finally gave in and took some over-the-counter meds to help ease some lingering discomfort.  I had also discovered my own little secret potion and sipped on a regular (yes, the real deal with sugar!) 7-Up.  Then, I took an hour-long nap in the late morning and awoke with enough energy to drive myself to the office for nearly 3 hours of work in the afternoon. 

Although I felt a bit other-worldly and like I was treading water in semi-solidified gelatin, I managed to put one foot in front of the other and was actually somewhat productive – although I do feel I need to double check what I did yesterday before feeling totally satisfied with that statement.  Although I had cut out most of my caffeine, Shannon said that I shouldn’t give it up altogether since my body was used to it and it might give me an energy boost.  I indulged in a mid-afternoon soda, which did seem to pick me up a bit more.  

I left work a little after 4:00 so I wouldn’t tire myself out too much, particularly since last night was the monthly meeting of my photography club.  I wanted to save some energy so I could attend long enough to hear the speaker, who is a friend of mine.  I was responsible for connecting her with the program committee, so I felt more than just an interest in her talk – I felt somewhat responsible to both parties.  An amateur astronomer, Ann gave a great talk on photographing the night skies and other interesting astronomical phenomenon and she was very well received.  I’m happy that I was up for it and made the effort to be there!

Although I’m feeling better, it still seems to take the whole of the morning for me to get up to a reasonable speed.  I woke up fairly early today, had a bit of tea and toast, actually rode the stationary bicycle for ten minutes – a pretty major accomplishment, and one the books say should beget more energy, had a soak in the tub, gently washed my hair (which is still in place), read e-mail and have worked on this piece.  Not a very ambitious series of events, but progress.  Now, fingers-crossed, and with some knocking on wood, I’m gearing up for another few hours in the office this afternoon.  So, off I go to fix a little lunch, gather my supplies and sally forth into the world of commerce.  

Round 1, Take 3

Okay, I spoke a little too soon.  Whether it was the running around with Robert on Friday, or the chemicals catching up with me, or eating the wrong sorts of things – or all of the above, I have to be honest and say that I have felt pretty puny since Saturday.  I had no energy over the weekend, little interest in food (but still no nausea, thank heavens), grumbly guts, and a general feeling of malaise.  My tongue is weird, and the pads on my hands are raw, and sensitive to hot water, like a burn.  I’m really not fond of feeling punky and listless, and am tired of sitting on my bum for 3 solid days.  It’s been a bit hard to get comfortable and I have little ability to concentrate on books, puzzles, or other pleasant distractions at the moment. 

So, in an effort to make the most of a less than ideal situation, I decided that a change of scene and substrate might do me some good.  I have moved operations from the couch in the living room to my bedroom.  It is on the southwest side of the house, and the sun is pouring in.  It’s bright and cheery with its Caribbean colors and artwork and, even though I have an aversion to being in bed unless I’m sleeping or am really sick, I’m just perching atop it, so it doesn’t really feel like a sick bed.  I have my laptop, some good pillows for sitting up, a warm throw with a cat on it – literally – and a dog nearby.  Although I don’t feel on top of the world, I’m settling in and discovering how to make myself as comfortable as possible. I think the switch, for now at least, may help relieve some of the tightness and achiness I’ve experienced over the past couple of days, when I was literally curled up, a little too tightly perhaps, on the couch.

As each day passes, I expect to get better at this, and hope that I'll have figured out the best way to cope with all these little nuisances by the time all six rounds of chemotherapy are over!  In the meantime, I remind myself that things could be a lot worse.  I must admit that I am most grateful that they are not!

The Recovery Room

Round 1 Follow-up

On Tuesday, I had to go back to the hospital for a shot of Neulasta, an immunity booster. Because the chemo tends to kill off all quickly dividing cells throughout the body, it affects the production of red and white blood cells as well. The white blood cells are the ones that fight infection and the Neulasta stimulates the production of a particularly important white blood cell for chemo patients. Originally the doctor had discussed my taking the shot home with me and giving it to myself on the day after chemo. The glitch, however, is that it is a $6,000 shot and insurance companies are not too keen on sending patients out with a prescription of that value. Although I could have had the prescription filled and taken it at home anyway, as I had planned to do, we discovered on Monday that it would have cost me a $3,700 a dose co-pay! So, it was without hesitation, and only some minor inconvenience and extra time that I decided to let the pros give me the shot in the treatment center. (In the arm, actually – at the treatment center!)

Thankfully, my side effects are pretty minimal. I am tired but not to the point of constantly lounging on the couch. Thankfully, the anti-nausea drugs are doing their work and I haven’t felt ill. Now that the Neulasta is kicking in, I am experiencing some bone ache, a fairly common side effect, for which I take Tylenol. So all in all, thus far, I’m doing pretty well with the once dreaded chemotherapy.

I also have great support at the moment. My trusty sidekick, Lydia, has been wonderful, and my brother, Robert, flew in yesterday afternoon to check in on me. He will be here for a few days and I hope to muster up the energy to show him a bit of this city, even if it’s only from the inside of the car. It’s great to have him here, although, of course, I wish I could have coaxed him to the land-locked Midwest under different circumstances!

Better Living Through Chemicals (aka the results from my visit with the medical oncologist)

Considering that I have cancer, the news since diagnosis has been relatively good: stage 1, no spread to the lymph nodes and the cancer cells were estrogen and progesterone receptor positive. (That may not sound good to you, but it is in a targeted treatment sort of way). The standard course of treatment for all of that would be radiation and hormone therapy for five years. Not too bad. 

The only wrench in my diagnosis was that I was three for three on the receptor front.  I also tested positive for another receptor called HER2 – the human epidermal growth factor receptor 2.  When HER2 is overproduced it promotes the growth of cancer cells.  It does not respond to the hormone therapy -- or radiation, for that matter.  HER2 positive cancer requires a more aggressive treatment.  So, despite much wishful thinking, I will be joining the ranks of those bound for chemotherapy.  The downsides are fatigue and hair loss.  The upsides, besides helping to keep further cancer at bay, are that they have much better drugs to combat nausea than they used to and I will save money for at least four months, probably more, since I will not need to pay for haircuts.  There is almost always some silver lining, if you look hard enough! 

I’m off to the radiation oncologist tomorrow, and will report on that visit, although radiation therapy won’t happen until the standard course of chemo is completed.