Last chemo of 2011!
I started off the afternoon with a routine visit with Dr. Semien. She asked how I was tolerating chemo and whether I was suffering from any tingling or numbness (neuropathy) in my fingers or toes (thankfully, no). While doing a breast exam, she noticed the sore looking ends of my abdominal incision and their proximity to the likely culprit: my jeans. She suggested wearing dresses to prevent irritation. (Hmmm, since I own maybe one or two winter dresses, this is practically a prescription from my oncologist for clothes shopping, isn’t it? Talbots, Gap, Nordstrom Rack, here I come.).
She also looked at my right underarm in the general vicinity of lymph node removal during the mastectomy. I have been feeling a small amount of soreness there; thankfully, she didn’t palpate any lumps, so I’m guessing the discomfort is due to a slight change in my backstroke.
Upon noticing the red rash all over my face and neck, Dr. Semien asked whether I’d like to be seen by a dermatologist. I assumed that she meant writing out a referral for one. I hemmed and hawed until I realized she meant I could be seen by one right then. She left the examination room for about 5 minutes and sure enough returned with a board certified dermatologist! He looked at my face briefly, I told him I’d had problems with eczema since childhood, and he surmised that I was suffering from a really bad case of eczema, perhaps brought on by the chemo, perhaps not. He said the area I had assumed was prematurely aging was in fact lichenification, a thickened area of skin which can develop after lengthy periods of irritation. The dermatologist reassured me that it wasn’t permanent (hurray!) and prescribed a mild topical cortisone cream to apply until the eczema clears up.
After finishing up with Dr. Semien and the dermatologist, I headed down a short hall into the adjoining infusion clinic. Despite my champion sized veins, the conscientious but unlucky nurse stuck me twice with no success. The needles are fairly small so they only sting a little when going in and, as usual, I distracted myself as much as possible by reading or drinking. When it was obvious the 2nd poke had missed its mark, I silently swallowed a groan and consoled the nurse who I could tell felt much worse than I did. Upon the latter failure, she immediately recused herself and flagged down another nurse who got me on the first try. (If at first you don’t fricassee, fry, fry a hen. — Caddie Woodlawn)
Thankfully, the remainder of the appointment was uneventful. It was time to set up my last two Taxol-Herceptin appointments in January and the first Herceptin only appointment the following week (which in future would be repeated just once every 3 weeks). To my utter delight and surprise, I learned that once I finish the Taxol, I will no longer need weekly blood tests. Furthermore, the Herceptin only appointments will take only one hour vs. 3-4 hours for Taxol-Herceptin (not to mention the additional 4 hours afterwards of Cold Cap therapy). I will no longer need Cold Caps, mouth icing, electric blankets, dry ice, or cumbersome coolers. Freedom!
I’m now in the home stretch for chemo and still waiting for the other shoe to drop. I have experienced almost no lasting changes if any in weight, immune system, energy level, hair, taste, feeling in fingers and toes, or digestive tract. Here’s to another two more uneventful weeks and beyond.
Weight: Back up slightly to 120 lbs. I’m impressed I didn’t gain more than a pound considering not only the reduced activity level for the week (to let my sore legs and foot recover) but also the passing of Christmas week. Bûche de Noël, chocolate kisses, and pecan pie, oh my!
General condition: 99.9% of normal.
Blood Tests (12/126 ): With the exception of the hemoglobin (which was only marginally low), all of my blood chemistries came back well within the normal range this week. Most notably, both liver tests, Bilirubin and ALT, have dropped back into acceptable numbers, assumably because my body has had several days to recover from the rigor of last week’s marathon.
Hair Loss: The hair’s still there! See this week’s photos below.
Body Aches: Post race body aches dissipated within 2-3 days after the marathon, with the exception of the middle outside of my left foot. After looking up possible causes and some pertinent anatomical images, I’ve concluded acute peroneal tendonitis is the likely source of discomfort and requires rest (limited walking, no running) until the soreness disappears. Fortunately, I can still bike and swim and anyway the soreness in my foot is nothing compared to how I felt right after the marathon. Here’s a silly video that demonstrates what my first 36 post-race hours were like. Can you believe I’m already thinking about marathon #2?
Peripheral Neuropathy: None
Nausea and Vomiting: None.
Intestinal Upset: None.
Mouth & Nose: Less frequent nosebleeds.
Nails & Skin: Skin continues to improve on coconut oil.
What would the holidays be for me if not a a time to relax with family and friends, hurriedly complete last minute shopping (thank you, Amazon Prime!), and scramble to finish holiday cards. Typically, the largest hurdle in getting the greeting card assembly running is a satisfactory photograph of the five of us together. This year, with time and patience running out and no great promise of cooperation from anyone, I opted for the far less preferable choice of individual photos. When sufficiently coerced and bribed, all three children were actually fairly cooperative when they found out they didn’t have to pose with siblings in what experience guaranteed to have been a much longer and more painful process.
Earl, however, was an entirely different story. I tried cajoling and reasoning. I finally wore him down after 3 days of entreaties and was granted a whopping 2 minutes on the porch with the two of us squished together, camera outstretched in my hand pointing back at us. I clicked the shutter button as quickly as possible, hoping to capture at least one decent shot. When he said he’d had enough, I flipped the camera to replay and anxiously sought a single shot where both of us looked fairly presentable. Some of the photos were flattering to neither of us but all of the rest had the same result.
He looked young and healthy and I did not.
I’ve been posting weekly Chemo ReCap pictures and have already commented on the sad state of the skin on my face, but my complexion’s true condition really shone in these closeup daylight pictures with Earl. Blotches, pimples, multiple new prominent wrinkles, redness, puffiness, yuck, yuck, yuck. I suppose I’ll take this chemo side effect over any of the other far more serious possible side effects which I have still not have experienced or experienced only minutely. That doesn’t make the situation any less distressing to my underlying vanity, however, especially when I was photographing us for a card which will hang on more than one household’s refrigerator for the next 365 days.
At Earl’s suggestion, I visited my usual online site for new cancer questions, breastcancer.org, and found multiple suggestions for dealing with premature skin aging due to chemo treatment. While many women experienced healthier skin due to steroid medication (though usually accompanied by fluid retention and/or weight gain), several others experienced deleterious changes similar to mine. Dishearteningly, of the latter group, most respondents admitted the damage was permanent. A few managed to reverse some ill effects via Botox or plastic surgery (no thanks) and many more were experimenting with coconut oil as a moisturizer.
Although I couldn’t find any scholarly articles supporting the use of coconut oil as a satisfactory treatment for acne, eczema, and aging, I did read up on plenty of anecdotal support. So on Monday, I stopped by Whole Foods and picked up a glass jar of cold-pressed, organic, extra virgin coconut oil. Once home, I eagerly cut the outer plastic safety band, loosened the tightly shut lid, and twisted it off to release the pleasant aroma of coconut. The oil is hard and white at cool temperatures, but after scooping out a small amount in a spoon and dumping onto my warm hand it melted to a clear liquid in seconds. I gently smoothed it onto my face and neck and while initially very shiny, the liquid absorbed directly into my skin within 10 minutes.
I repeated the procedure Monday night and added my hands to the coconut oil application (topping them off with socks to hold in the moisture in overnight). I awoke to softer, less irritated facial and hand skin on Tuesday. Last night I did the same with my feet. This morning, all 3 areas seemed to be smoother and happier. Acne patches on my face (prior to chemo, something I hadn’t had significant problems with for many years) were clearing up.
I don’t know if the coconut oil will become a permanent substitute for my customary moisturizers, Aquaphor and Aveeno. Only repeated applications and vigilance to watch for allergic reactions and assess restorative benefits will tell. In the short term, the coconut oil does apply and absorb much more easily than the Aquaphor, lasts much longer than the Aveeno, and as an added bonus I smell like a macaroon!
I’m 75% done! One more Taxol-Herceptin treatment this year, two in January, and I’m on to just Herceptin.
This week’s appointment was scheduled as early as possible because Wednesday also happened to be our youngest child’s 5th birthday. Since he was too young to travel to Austin with his brother, sister, and grandmother to visit my brother and his family during winter break, he has been left at home with us. The poor little guy — no siblings, no preschool, no birthday party (delayed until late January after I finish chemo and no longer have to worry about being exposed to kiddie germs), and no parents for a good part of his 5th birthday. We had to do something.
Luckily, a small army of loving adults stepped in to save the day. On our way to the infusion clinic, we dropped him off at my friend Truc’s house. She was already waiting with a living room filled with her own children and two other little friends. Together, they celebrated his birthday with a morning full of indoor archery, bouncy balloons, and all around fun.
Next, my brother Dale and his partner Tom drove down from Concord to take Oliver out to lunch. I had suggested a trip to Peninsula Creamery, a local spot offering up milkshakes, burgers, grilled cheese sandwiches, and onion rings (Dale and Tom were only too happy to comply on this point). However, when asked where he wanted to eat, the little birthday boy requested Ikea. Ikea??? I should interject here to say that this was no outlier — the combination of simple but agreeable kid food (pasta, chocolate milk, carrots with Ranch dressing, and Swedish almond cake) paired with the nearby play area in Children’s Furniture has made the home goods store a not infrequently requested treat for him. Visions of onion rings were thus swapped with Swedish meatballs, and off they went.
Afterwards, the trio drove to our nearby pool. Outdoors. In late December. (Hey, it’s Northern California. We pay good money for the privilege.) Birthday boy strapped on his flippers and demonstrated how he can now doggie paddle through the water, no doubt delighted with the new, rapt audience for monologues on his ability to twist around, zoom left, zoom right, and swim backwards. One spritzy locker room shower and a thermos of hot cocoa later, they were on to the next destination: the candy store!
Needless to say, by the time he was returned to us mid-afternoon, he had far more fun than he would have had with us, and far more fun than we had at Kaiser. That’s not to say our day at Kaiser was unpleasant. The atmosphere in the infusion clinic was slightly more festive than normal, with nurses wearing ornament earrings and patients arriving bearing baked treats for the staff. Beneath the veneer of holiday cheer, however, it was business as usual and since cancer apparently doesn’t take vacations I expect to see many of my fellow patients again next week just before the new year. At any rate, because our early clinic arrival meant that my treatment wasn’t delayed by a day’s build-up of other patients’ complications, we were able to finish by early afternoon and finally make our way home to celebrate the rest of our 5 year old’s special day.
Well, I was feeling superb until I assaulted my body during Sunday’s race. (Great. Now I can’t stop mentally replaying my 17-year old niece Rachel’s favorite Monty Python joke: Der ver zwei peanuts, valking down der strasse, and von vas… assaulted! peanut. Ho-ho-ho-ho.) The physical toll no doubt exacerbated many symptoms this week, but those were mercifully short-lived.
Weight: Drop down to 119 lbs. as calculated by the following entirely non-scientific formula:
500,000 calories consumed in mini M&M packets at marathon aid stations - 1,000,000 calories burned off during marathon = 1 pound loss.
General condition: 99.9% (before race).
Blood Tests (12/19 ): Slight anemia continues. Also, both liver tests, Bilirubin and ALT, are now elevated. I was a bit worried about this change until I read that a mild elevation in both liver function tests can be due to nonhepatic related causes like muscle damaging strenuous exercise.
Hair Loss: No change on head hair which continues to grow like crazy. My last hair cut was back in September and I could really use a hair trim but won’t have one until maybe 6 weeks after the last Taxol treatment. Arms and legs, by contrast, are quite smooth from extensive body hair loss.
Body Aches: Yes! Just not any due to Taxol or Herceptin, but to the 2nd half of Sunday’s marathon. It took every ounce of willpower to make my jelly-legs walk the additional 1/4 mile to my car after leaving the finish line. I miraculously managed to navigate the car home, mummy walk up the stairs to my front door, and immediately start a hot bath running (which I found out afterwards was a bad idea since it encouraged inflammation). Soreness on Monday made sitting and stair climbing/descending significant challenges, but was improved through a therapeutic morning swim. By today, Wednesday, I’m almost normal, a big relief since it’s chemo day. I’ve been swimming, resting, taking a little Ibuprofen, and lightly massaging to bounce back a little less painfully. No running planned for at least a week.
Peripheral Neuropathy: None
Nausea and Vomiting: None.
Intestinal Upset: None.
Mouth & Nose: Almost daily nosebleeds.
Nails & Skin: Ugggh, my skin. Every day it gets drier or rashier, or on blue-medal days like yesterday, both drier and rashier. Of all the parts on my body, my complexion seems to be taking the biggest hit from treatment, though I have to hope this is primarily from eczema triggered by the extreme Cold Cap temperatures rather than the Taxol itself. In a mildly distressing development, weekly photos like the ones below (compared, say, to the photo in between the two surgeries) where I’m tracking hair changes have also inadvertently documented accelerated facial aging. Still, this is a small price to pay for the potential curative benefits from chemo and Herceptin.
Take that, Cancer. Surgery, chemotherapy, Herceptin, diet, vitamins, exercise. While I’m doing whatever it takes to stop you in your tracks, Sunday’s race shows you can’t stop me in mine.
Quick summary: I strapped on my new running shoes, pulled on a pair of earphones, and ran my way through the entire Zombie Runner Bay Trail Half-Marathon in 2:06:49. This was not only a personal record (PR — not that this says too much since I’ve only run the one other half-marathon back in February), but I was stunned hours later to find out I’d actually placed 3rd in the Female 40-49 group. After I crossed the finish line, I took a 23 minute break to socialize, freshen up, and refuel. And call me crazy, but instead of hopping back into my car to head home, I went back out and walked another half-marathon in 3:08:13.
Fine, maybe I am a little crazy, but mostly I chalk this up to being plain stubborn.
You see, the second half-marathon was entirely premeditated. After completing the Kaiser Permanente Half-Marathon earlier this year, I mentally logged a full marathon as a personal goal to complete by the end of 2011. Unfortunately, a mammogram the following month set the year’s overriding agenda, and running (along with most everything else) took a distant back seat to cancer treatment. Months of surgeries and recoveries prevented any sustained return to running, although I was determined to copiously continue walking throughout.
From what I’ve read, a safe build-up to running a marathon’s 26.2 miles can take around 4 months. Since reconstruction surgery was just 11 weeks ago and my doctor granted permission to resume running only 6 weeks later, could I seriously ramp up to a full marathon in a paltry 5 weeks? No. But with a little creative maneuvering, I reasoned I could run a half-marathon, check conditions, and if favorable, walk the second half without injury.
Two and a half hours after the start of the day’s races, when the large crowd of 5 mile and half-marathon runners had largely dissipated, I strode back out onto the trail. At my ambulatory pace, I was passed occasionally by running marathoners, but for the most part made my way around the second half without seeing too many more participants.
The second half was by far the more difficult portion. After Mile 8 (total 21 miles) my left foot and right thigh became sore and the rocky path failed to provide a comfortable walking surface. Also, with almost no one else around to pace myself against or to provide visual interest, and with landfill as a backdrop, the next few miles became indisputably boring. All I could do was reassure myself that there were only 5 miles left to go, not to mention the fact that I was closer to reaching the finish line than turning around and heading back to the start.
Four miles. Three miles. Both legs were complaining and I had to mentally steel myself to put one foot in front of the other. Two miles. Whose brilliant idea was this anyway??? Oh, right. One mile. Finish!
The race rep who had earlier given me permission to unofficially continue with the second half was waiting at the finish line. She offered to change my official race to the marathon instead of the half-marathon. I considered briefly: PR and a 3rd place medal vs. my first completed marathon, not to mention one completed in the middle of chemotherapy. The decision took only a moment. I swapped my black ribboned half-marathon finisher’s medal for the purple-ribboned marathon medal and, as a generous surprise bonus, I was allowed to keep the 3rd place medal for the now erased half-marathon time.
Chemo session #8 proceeded smoothly and pleasantly. The nurse was ready to start my I.V. shortly after I was seated and although I had to wait before each infusion bag (first saline, then Herceptin, premeds, and lastly Taxol), we were out the door within 3.5 hours. Each medication is prepared just in time in the oncology pharmacist’s office down the hall and delivered chairside. The nurses then follow a strict protocol to ensure that the correct item is being delivered to the intended patient: they flag down a collaborating colleague and together check and electronically scan my wristband, ask for my name, call out the medical record number, medication, dosage, and finally enter everything into a nearby computer.
Earl’s proficiency with the Cold Caps has been garnering praise from the observing nurses. In fact, the head nurse commented that they need carbon copies of him to better help the other two patients currently using Cold Caps (on different days from mine — we have yet to see someone else using them). From what she was saying, those patients’ helpers aren’t as efficient in extracting, warming, measuring, kneading, fitting, and recooling the Cold Caps as Earl has become. We now have just 4 more Taxol-Herceptin treatments left, which means around 56 more Cold Caps for him to fit and for me to wear. I will continue on Herceptin through next October after the Taxol ends, but the Herceptin doesn’t cause hair loss so won’t require Cold Cap usage.
I am ever refining my own infusion regimen. This week, I decided that sucking on mostly ice cubes interspersed with some frozen banana and mango chunks worked most palatably to keep my mouth cold during Taxol. I have thus far managed to avoid the taste changes and mouth sores frequently suffered during chemotherapy. At this point, I think I can guardedly conclude that mouth cooling is working, with the obvious alternative conclusion that the Taxol dosage is too low to actually trigger these side effects in me.
I decided to stop using moleskin under my chin. At earlier infusions I had been using a maxipad (yes, that kind), then moleskin, and have now switched to a folded washcloth to cushion my neck from the scratchy and hard Cold Cap chin straps. I do have to hold the washcloth in place during cap changes, but the cloth is much softer and there’s no moleskin residue to clean off afterwards. I also cut holes in the centers of the moleskin protecting my ears from frostbite. Before, I was close to deaf from the layers of moleskin and the Cold Caps blanketing my ears.
Just as we thought we were clear and free when leaving the infusion clinic, we discovered the building’s elevator to be newly out of order. Poor Earl ended up having to carry our Cold Cap and dry ice filled cooler (~100 pounds total) all the way down the stairs. At least we only started out on the second floor.
The big question for me this week has been whether I can stay healthy and energetic enough for a half-marathon tomorrow at the Palo Alto Baylands. I have intentionally taken a break from running over the past week to avoid last-minute knee problems, something I’ve been cautious with since I injured my right knee while training for my first half-marathon. Overuse during last winter’s training led to acute pain which then forced me to take a break and reassess. Since then, I have worked on improving both form and stride and have moved towards a more minimal style of running.
Here’s a fantastic new pair of shoes I bought recently that really underscores how differently I’m moving. Gone is the thick bed of cushioning typical of today’s running shoes and in its place is a super-flexible, slightly compressible, low to the ground, lightweight bit of engineering. They’re not the most attractive shoes but more importantly feel great. We’ll see how they feel after 13.1 miles tomorrow, however.
Maybe it’s mind over matter, but I’m back to normal after being slightly off-kilter last week. If I still feel ok this weekend, all systems are go for Sunday’s half-marathon.
Weight: No change from last week’s 120 lbs.
General condition: 99.99% of normal. Truly.
Blood Tests (12/12 ): I continue to be slightly anemic but my white blood cell count has bounced back up to a prechemo level. My liver seems a bit confounded by the Taxol as demonstrated by liver function tests: the ALT came down but the Bilirubin went up (if they both go up it indicates possible liver damage; I’ve no idea what it means if one goes up and the other doesn’t).
Hair Loss: Head hair is going strong. My right eyebrow is markedly thin (read: almost gone) on the right side. I think the moleskin I’ve been putting on strategic locations on my head during Cold Cap use is inadvertently contacting my eyebrows and pulling out some hairs. The difference between normal times and right now when the Taxol is killing hair follicles all over my body (but not on the scalp under the Cold Caps) is that those yanked out eyebrow hairs aren’t regenerating.
Body Aches: None.
Peripheral Neuropathy: Tiny bit of numbness in left thumb and forefinger again but for only an hour Saturday morning, just after I returned from a very cold walk outdoors. It seems like there’s a pattern here. Last week’s neuropathy also occurred after my fingers became very cold while I was outdoors for a long period of time. I should probably pull out some ski gloves for when I’m walking or biking.
Nausea and Vomiting: None.
Intestinal Upset: None.
Mouth & Nose: Some nosebleeds, exacerbated by cold weather and the house heater.
Nails & Skin: The Taxol is doing a number on my nails. A good chunk of my left thumb nail peeled off Saturday after I forgot to reapply protective nail polish for a few days. The nail damage, which was prompted by peeling some chestnuts we’d picked at a nearby farm a couple of weeks ago, was unexpected and quite impressive. Fortunately, there was still some depth left to the nail so I filed it smooth and reapplied polish to prevent further damage. Also, skin on my forehead and temples is blotchy where the moleskin has pulled off a few layers of skin. I’ll have to assume this is preferable to frostbite damage.
As a parent, I know that one of my primary responsibilities is to dole out those little bits of advice that will help my children coast a little more easily through life.
Don’t forget please and thank you.
Brush your teeth.
Tell the truth.
Eat your fruits and vegetables.
Get plenty of sleep.
Treat him/her the way you would like to be treated.
Frequently repeating these admonitions to my children not only demonstrates that I’m on the job but also reminds me that I could do worse than heeding them, too.
Take tonight. Watching my my high school freshman son plod through a seeming mountain of homework just a week before winter break made me tired and anxious. Deep breath, think quickly, gotta look good in front of the teenager. Take it one assignment at a time.
Five completed subjects later, I was feeling smug about my parenting skills but could sense there was a lesson in there for me, too. Take it one day at a time.
Last Sunday I was apprehensive about my own mountain, constructed not of Romeo and Juliet, cosines, and Napoleon, but of neuropathy, flagging white blood counts, and digestive upset. In truth, these minor complaints didn’t amount to more than a molehill. However, in my mind, they were harbingers of bad times to come. They were a glimpse of the potential misery in these last few weeks of chemotherapy (and beyond!) as cumulative cell damage led to serious discomfort and disability.
And yet here I am one week closer to the end and I feel (almost) completely normal and significantly sunnier than last week when it seemed the inevitable had at last begun. It turns out the sky wasn’t falling and the inevitable wasn’t a foregone conclusion.
Fatigue? Nope. Serial infections and illnesses? Nada. Nausea, diarrhea, constant metallic taste, forgetfulness, hand and foot pain, …? Not a bit.
Of course, I still have five more Taxol infusions to go so there’s plenty of opportunity for these problems to crop up. Does that make me anxious? Nah. I’m taking it one day at a time.
Wednesday’s appointment proceeded more smoothly than last week’s on a few fronts. In fact, it was probably the most pleasant infusion experience yet.
1) My appointment time was bumped up to the morning. What a world of difference this alone made. The infusion clinic was still very busy, but we started the process going before noon, were out of the clinic by mid-afternoon, and I was actually able to have dinner with the kids and help with homework in the evening. Unfortunately, I don’t think I’ll be as lucky for the remainder of December. As the holidays draw near, the clinic will reduce its hours for employee holiday time, making it unlikely I can move existing afternoon appointments.
2) Antihistamine change. The Benadryl has really been putting me to sleep, so with the oncology pharmacist’s ok, I switched to an over the counter Zyrtec pill an hour before the Taxol was administered. I managed to stay awake all day and more importantly still avoided allergic reactions. I was a bit concerned the dexamethasone steroid would make me wired or prevent sleep without the Benadryl to keep it in check, but no such issue arose.
3) Frozen fruit + ice. Thanks to the success of the frozen grapes last week and my friend Tania’s suggestion to try frozen bananas, I averted the need to bring in any nauseatingly sweet popsicles this week. Of the variety of items that I brought in this week, I found alternating between sucking on plain ice cubes and gnawing on frozen mango chunks worked best. The chocolate covered banana chunks were good but too sweet after just a few. I’ll try plain frozen banana chunks next week.