joy of girlfriends

time with friends a gift

nourishing the mind and soul

better than chocolate

♦     ♦     ♦     ♦     ♦

This morning I woke up to a circus of raging side effects. It started with electrical zaps of pain to my left thigh and right shoulder and then scattering over my joints as though my body were a target for archery practice. No sooner than the bone pain eased, nausea and diarrhea jumped to the front of the line with as intense an attack as I could remember. It was mid-morning before they all diminished.

The rest of the day turned out to be one of the best days off. I spent it with girlfriends. It’s one of the pleasures of women to be able to enjoy the company of girlfriends who are smart and fun and easy to talk with about anything that pops into your head. Women share moments together that are satisfyingly supportive and emotionally fulfilling no matter what activity surrounds your conversation. So, over calamari and drinks, and later, shrimp and more drinks, we expounded our philosophies and expunged the stresses of daily living. It was a perfect catharsis.

Amazingly, with just a brief nap after I got home this evening, I’m still awake to watch Woody Allen movies, which will mean I’ll laugh myself to sleep tonight. After so many days of relentless fatigue, today’s break from work and routine helped to restore a little energy, emotionally and physically. I highly recommend it.

5 6 7 8

Avastin, elevated blood pressure and new meds

Today started at the office. Buster came with me, as I’m taking him most places now to reinforce his training. He is getting more accustomed to his surroundings at my office as well as riding the elevator and shuttle bus. He seems to like the various settings, adjusting quickly to settling down to sitting and lying down nearby. He is unfazed by people coming and going. Still, walking around with him, he likes attention from people while he is improving with being able to focus on my commands amid distractions.

I met today with my PCP. My blood pressure needs taming. I have a new prescription, atenolol, which I’ll begintaking tomorrow along with the continued higher dosage of the benazepril. Hopefully, I’ll see a change in a few days. We hope, too, that after the Avastin® treatment is over, my blood pressure will return to normal.

I was so exhausted that driving home was a challenge to stay awake. The rest of the day: sleeping, drinking water, sleeping . . .

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Avastin: elevated blood pressure

My primary care physician (PCP) wants to see me about my blood pressure, which, as you may have read in a recent post, has been an issue. My oncologist thinks it’s the Avastin®, which has as one of its side effects elevated blood pressure. During chemo we were able to reduce my BP enough so I could get my treatment.

Tomorrow I will see my PCP since I’d written her a note about my elevated BP. Today I doubled up on my BP medication and tried to relax a bit, though it was a very busy day of work. We are in the middle of a busy recruitment season, and we are preparing for an accreditation review of our program. Either one of those two scenarios will usually send the participants into a frenzy, and that’s how it has been: a frenzy. I did manage to sit down at lunch time and immediately dozed off, not before setting my alarm to wake me up in thirty minutes. I am so tired I could sleep standing up.

Marvin has been looking up side effects for elevated blood pressure: headache, dizziness, blurred vision and nausea. How does one distinguish whether the side effects are from the chemo drugs or the elevated blood pressure. No headaches, some dizziness, blurred vision at night looking at my iPhone, and, yes, I do have nausea.

I hope that the side effects won’t prevent me from taking the remainder of my treatment with Avastin, but I won’t think too much about it and just wait to talk with my PCP tomorrow.

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what happened to my taste buds

nasty metal mouth

attacks food once delicious

now mouthful of dirt

♦     ♦     ♦     ♦     ♦

One of the side effects that has grown progressively worse is the deadening of my sense of taste. Of the five basic tastes, sweet, salty, sour, bitter and umami, it’s salty, umami and sour that seem to register at all. The sensations are dull at best, and often just numb. Sweet registers the least, so that foods that normally would be extremely sweet, or what I’d call “too sweet,” have a kind of other, weird, flavor. It’s actually uncomfortable to eat.

Unless I eat something that specifically features one of the three tastes, salty, sour or umami, I can’t really taste it; I can only detect the sensation of food in my mouth. Potato chips (which I don’t normally like); Chinese dishes with sauce that includes soy; soup that has a dollop of yogurt or sour cream; tart frozen yogurt with fresh cut fruit that is also very tart. Those seem to be the foods that work. Otherwise, I eat just for nutrition. Foods I typically eat, which include eggs, whole grain bread, dry or cooked cereal, veggies, beans, pasta, grains and fruit, all resist detection. Today I really wanted something sweet and ordered coffee and an apple fritter that got rave reviews from staff and customers at the counter. Because I could barely taste it, I left most of it uneaten, figuring that if I couldn’t enjoy it, I didn’t need to consume the calories.

So, the only way to deal with it is to eat foods that are nutritious and to stop trying to taste any of it. I eat small meals, and Marvin has brought me some bottles of meals that pass through the palate without a lingering aftertaste. Although I cannot taste what I want to taste, I have this sickeningly metallic, foul taste that lingers. Sour candies seem the best in helping to replace or disguise it.

Such an odd side effect: distorted taste sensations despite a rather normal appetite.

5 6 7 8

whack a cancer

One day while waiting in Karen’s room to submit my donations, I met someone who works here at UCI and even in the same department, though we’d never met nor known each other before that day. We seemed to have our infusions at the same time on Friday, so our nurses would send our messages to one another on those mornings. Her great sense of humor was evident in our messenger-delivered conversations. Yesterday, my chemo nurse Jennifer says to me, I have something for you and gives me this box with a game called, Whack a Cancer (of course, Cancer replaced another word on the box). Thank you, dear friend.

I love it. I played with this game until we figured I should calm down for my next blood pressure reading. The joy of the game is in whacking with a mallet the little heads that light up. This is the perfect end of a week for this as I have been in an extreme “I hate cancer” mood all week long. This gave me the right outlet for those feelings. It’s a lot better than scowling or screaming “I hate cancer” at every passerby.

5 6 7 8

Taxol and Avastin, Zometa, clonidine: chemo 3.3.1

After a two-week break from chemo to allow me to get the vaccines for seasonal and H1N1 flu, I headed to Chao today to resume this regimen. As always, Marcela, offered her friendly greetings from the reception desk on the first floor as we headed to the elevator for the infusion center on the second floor.

I knew that with my elevated blood pressure, it was very likely that I would not be receiving the Avastin®. Avastin, the anti-angiogenesis biological drug I’m receiving, can raise blood pressure; at the same time, if your blood pressure is over, I believe something like 150 systolic, they will not administer the Avastin. My systolic blood pressure has recently been hovering in the range of 160 to 189. I informed the the nursing staff of this as soon as I arrived at Karen’s room to donate my blood and urine specimens, and they noted it so that the check of my blood pressure would happen early in the series of prep events. Karen’s room has a number, but no one calls it by that: we all call it Karen’s room because Karen is the supervisor whom we love  and who takes care of all of us with her brand of calming experience and open sense of wonderfully welcome humor.

We settled in in the infusion center’s waiting room. Dolly, the volunteer who works with patients often on Fridays, treated everyone to her freshly baked mint chocolate vegan cookies. They were the best. Soft, perfectly sweet, finely textured, smoothly chocolaty with the slightest lingering on the tongue of pure joy. I’d highly recommend these with a fine cup of coffee or espresso. What a blissful start for a chemo day. Michele and Gema were both working as usual like busy bees while we all shared conversation as though we were at happy hour.

After a brief time Dolly escorted us to my assigned room, my favorite, Room 1, where as soon as I settled into bed, my ever cheerful chemo nurse Jennifer whisked into the room to get everything in order and to start my infusion of saline. The tech arrived to take my vitals: darn, I didn’t get the spelling of her name, as she was someone new to Friday’s schedule. Jessica was there smiling, as she passed by, taking care of her patients. The dreaded readings: 169/106 led to a series of busy communications between Jennifer and my hemonc. The determination: administer clonidine to try to decrease my blood pressure so I could receive the Avastin. So, following the Zometa®, the Decadron®, Zofran® and Benadryl®, I took another little pill: clonidine. Since my red blood cells higher than 10, I did not need any remedies for the anemia. A couple more readings, and my blood pressure decreased to 144/84. Dr. Mehta sent along instructions for me to contact my PCP and to change my prescription for my blood pressure. After that all went smoothly.

I will talk about this tomorrow: while I was there, a fellow cancer warrior, who also works at UCI and in the same department as I, sent me a little game: Whack a Cancer. I played with it until we decided I need to calm down for my blood pressure reading. More on my post tomorrow.

As soon as the dust settled, Marvin headed out to the cafeteria. He returned with a little treat, custard, since the cafeteria was closed between breakfast and lunch. He also brought me a scarf that instantly became a favorite: a puckered tan scarf that feels like cotton and rayon, softly comfortable. We managed to connect to the Internet after I added my two additional computers to my employee list of WiFi devices. And then I drifted in and out of sleep until it was time to go.

We headed out, and all I can remember now is laughing as we left Chou. I think someone said something funny, though I don’t remember who or what, and then laughing uncontrollably till after we got to the car. The Benadry makes me feel totally goofy: like I’ve had too much to drink, most obvious in my inability to walk a straight line. We headed over to get some yogurt and then to our friend’s bookstore Open in Long Beach. I had a revelation: a chihuahua that is cute and sweet and huggable. I sat heron my lap (don’t tell Buster) while she looked up at me with smiling eyes and then dozed.

After that we picked up Buster–didn’t tell him about Lucy–and headed home where I fell into a deep sleep until waking to my iPhone alarm and Marvin’s nudging. Aah, the weekend is here.

5 6 7 8

extreme fatigue: cancer’s constant companion

patience is my quest

eternal to capture this

fleeting aptitude

♦     ♦     ♦     ♦     ♦

Today we started a very busy season at work: recruitment. Since my job is a part of me that I love, I enjoy the aspects of this season that are simultaneously hectic and endearingly fun. My office plans the schedule and executes the plan for some twenty days of interviewing candidates for our program. It’s one of my favorite times of year.

I want to zip around as I used to do with the same level of energy that colored my activities before stupid cancer bombarded my life. Instead, I plod through the day with my walker, running out of energy halfway through the day. It was only one day this week, one single day. It was also a day after a two-week break with chemo, so, laughingly, I’m at the height of my strength. Yet, I pushed my way through the day and secretly prayed that a surge of strength–a second wind, and perhaps a third–would rescue me for the second half of the day.

It’s a part of this stupid disease that I hate. It’s a part of this disease I can’t control. It’s a part of this disease that makes me realize that, despite my hope and my efforts, I will probably never adjust to the lack of vitality that plagues every waking moment. Many of us talk about the fatigue that comes with the turf. Describing it to someone who has never experienced it is difficult, if not impossible. Have you ever been so tired you wanted to cry? Until now, I’d never felt anything like this in my entire life. I would never have understood what that meant–what it meant to be so exhausted from having done nothing but average activities–not from dancing or working out at peak intensity for hours but from only ordinary activities. I get up feeling exhausted. As the day moves on, the only change is that I get more exhausted. How do I cope? I try not to notice. I ignore it.

I’m sure it makes me less tolerant of many things going on around me. I’m sure I’m less patient about coping with some of the details in my life that include not just work but chores, errands and working toward my own personal goals. Most of all, currently, I cannot find the patience to accept that fatigue rules every part of my day no matter how long I sleep nor how deeply.

Tonight, again, I will meditate on adapting to this limitation . . . hopefully, before I fall into a deep sleep.

5 6 7 8

before and since: metastatic breast cancer

One of the discussion groups I frequent was discussing how we’ve changed since our encounter with breast cancer. It got me to thinking about how things were then and now.

then: having energy to spare, often working 14 hours
now: falling into coma-like sleep as soon as I stop moving

then: dancing, turning, jumping, leaping–the more I did, the more energy I had
now: dancing ten minutes at the most now, sans turns, jumps, leaps; balance has left the stage

then: enjoying hour-long walks during the week and several hours on weekends
now: ambling along with my walker, unstable enough to fall over, needing to pace myself so I can make my return trip

then: squirming into weird shapes with yoga or just waking up
now: wearing a TLSO brace to keep my back from bending or twisting and rolling like a log in bed without it

then: cooking with glee, experimenting with new foods, new tastes
now: avoiding most cooking that involves chopping more than a clove of garlic

then: enjoying spicy food
now: eating bland food to avoid irritating sore mouth

then: enjoying the taste of so many delicious meals
now: unable to sense most tastes because my taste buds are numb

then: remembering names, phone numbers, directions
now: forgetting everything before you finish your sentence

then: being dexterous and coordinated
now: dropping objects and unable to pick up pieces of paper because my fingers are numb

then: loving spontaneous moments for going out or being amorous
now: hating having to plan, plan, plan for every nuance

then: being able to plan an outing
now: avoiding advance planning because you may be unable to get up let alone go out

then: always comfortable to warm in our lovely SoCal temperatures
now: freezing all the time no matter how warm it is

then: a head full of thick, curls
now: patent leather head

then: thinking I’d dance until I was 90
now: planning to surprise my doctors with my longevity

5 6 7 8

breast cancer treatment: no cookie cutters

One of the common misconceptions about breast cancer is that everyone receives the same kind of treatment. Our treatment, though, varies as much as our personal diversity. When we are diagnosed, our oncologists assess our condition both from the disease, which in itself can be complex, and from other factors, including our overall state of physical and emotional health, and then decide our treatment. If you talk to any number of breast cancer patients, you’ll hear about various drugs over and over again, for example, Adriamycin®, Cytoxin® and Taxol®. Each of us, however, gets a dosage based on our age, our weight, our condition, our risk factors, the protocol and a host of other factors. We might be participating in a clinical trial, or we might be simply on a regimen of treatment. Some of us get our drugs every other week; others, every week, and, yet others, according to another schedule.

Again, our tolerance and reactions to our treatments are as varied as we are. Some of us may get nauseated often and severe; some may vomit; some may have diarrhea. These are only the very common physical side effects affecting many of us. Yet, I know from just my own experience that my range of those particular side effects has encompassed the full gamut from mild to severe. Sometimes we react to the prep drugs for chemo or the drugs that treat the side effects of the chemo. When I went through my initial chemo treatment, I had severe febrile reactions not to my chemo but to the Leukine®, which helps combat neutropenia. I would sit with a thermometer in my mouth as soon as I took my shot and for several days following. As soon as my temperature started rising, I started eating popsicles and ice and using cold compresses on my head and under my arms. Sometimes it worked, and sometimes I ended up in the ER.

I have learned not to read about side effects in advance. It makes no sense to me to read about miserable possibilities that may never occur to me. If  I sense a reaction or feel a change, I look then to see if it might be one of the side effects. Bone pain, runny nose, nosebleeds, neuropathy, nasty taste, sore mouth, puffy face, red face, swollen feet, blood pressure changes, . . . the list goes on. I have had so many reactions I can’t remember them all. Yet, to me, in the long run it doesn’t matter. What matters is that the body is amazing and resilient. I continue to do what I can to stay strong and healthy. I know I’ll have periods where I will feel better and worse; I like the times when I feel better, but I am finding ways to deal with the times that I feel worse. I’m the master of ignoring the bad. It’s my Pollyanna side.

5 6 7 8

giant pandas: San Diego Zoo’s pandacam

One of my favorite Internet pastimes is watching the San Diego Zoo’s pandacam. I’m good at resisting watching the pandacam when I’m working as I know I will be unable to tear myself away. During the evening hours, though, it’s great to watch as Bai Yun, the cub’s mommy, with her latest little cub, grooming and feeding him. This is her fifth baby, and she has learned to be a very good panda mom.

Zhen Zhen, whose name means precious, was the last baby girl, and Su Lin was the previous baby, a girl whose name means a little bit of something very cute (sheesh, I love that name ). I started watching the pandacam when Su Lin was born and have been fan ever since. Sometimes at night when I have a hard time sleeping, I watch the pandacam on my iPhone; it’s cheerfully relaxing and is completely counter to the creepy thoughts that sometimes plague the night.

Currently, according to Chinese tradition, the new baby cub will receive his name on the 100th-day anniversary of his birth. As is now the other tradition at the San Diego Zoo, they are collecting votes at their Web site for the five finalist names out of over 6,000 . I am happy to say I have just added my vote and can’t wait to learn what we will soon be calling the new little cub.

If you haven’t seen the pandas, you are missing out on a special treat. Sometimes you’ll see only the cub sleeping, sometimes you’ll see Bai Yun (her name means white cloud), and sometimes you might catch one of those special moments–like the cub nursing or cuddled against mommy. Because of the new baby, most of the pandacam views are of the den with Bai Yun and the cub. You will, also, typically, see the other San Diego pandas ( including Gao Gao, daddy to the new cub and four other babies; his name means big big). The Web page with the pandacam shows a list of the various cameras along with which panda you’ll see in those views.

I highly recommend the pandacam . Did I mention you can freeze a moment into a postcard to send to your friends or to drive your partner crazy with multiple postcards of so many special baby panda moments. And don’t miss the panda cub’s weekly exams, all part of the blog at the site.

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