Wednesday, June 10, 2009

Rainy Day Rantings

Posted Jan 24, 2009 2:52pm

It is six weeks post chemo, and three months of turban wrapping has started to lose its fascination. Dave said leave it to me to turn hair loss into a glamorous experience, but now I would like to see a little replacement growth before I start radiation. The latest displacement of my fears of cancer recurrence is to perform a new morning ritual of searching my scalp for signs of peach fuzz. Just prior to my usual primping, I don my “googly-glasses” (3.25 strength usually reserved for close bead work) and devote a few minutes of squinting into the magnifying mirror on my windowsill to closely examine my scant buzz cut under the clear light of day. I was very fortunate to not lose my brows or lashes, although they thinned a little. But you can imagine my renewed hope when I found a freshly sprouted eyebrow hair a few days ago.

Unfortunately, during hibernation the follicles seem to have lost some of their innate intelligence to follow an appropriate growth pattern. This young hair appeared on a random spot in my upper eyelid, like a confused baby animal that wandered away from the safety of the herd, so my lioness instincts attacked it with tweezers and plucked it away. The brows may be thin, but they are neatly aligned. In my world, OCD trumps phalacrophobia (“a persistent, abnormal, and unwarranted fear of becoming bald”).

Those neuroses aside, I am delighted to find my energy and mental acuity are back to their normal hyperexcited levels. Since the last chemo, the post-holiday dietary cleanup and other good stuff mentioned in the last post have helped me to increase my activity, start toning muscle a little, and drop a couple of pounds. I had taken a break from oxygen therapy for a few weeks over the holidays, then started them again last week. Now that all the chemicals are leaching away from my system, the oxygen therapy can take full effect and I feel like my brain is on fire – in a good way!

Like the old saying, I had been down so long, it felt like up… my brain just won’t shut off and the creative juices are flowing. I went on a long overdue frenzy of office cleaning/filing/correspondence catching up this week. This weekend I’m catching up on household and art projects, and last weekend I cooked up enough food for two weeks of lunches and dinners.

All this is just in time for six weeks of daily radiation, which starts next Tuesday. I’ll go the same time every day and be in and out in about 20 minutes, including time for costume changes. The “big chemo” is over, and now I’m doing all the periodic re-tests. In preparation for radiation, last week I had a CT scan and two tiny tattoo dots (painless) to designate where the radiation beams will be aimed. I was positioned on the treatment table with my arm overhead & a mold was shaped around me so I can duplicate the position every time I get zapped.

This past week I had another MRI (inspiring visions, although not as intense as the first one), and in 2 weeks I have the second MUGA scan. This is so weird for me. I went from a lifetime of just going for an annual physical to planning my daily life around my treatment schedules.
So far everyone has said radiation is a cakewalk compared to chemo, and if I’m going into it feeling this good, I may be able to stave off the most common side effect of fatigue. Here’s a little aside on the word origin of “cakewalk.” In the 19th-century, this was a strutting contest held among African Americans in the southern US in which the contestant who walked with the fanciest steps won a cake. It is also the origin of the expression, "Well, if that doesn't take the cake!" Its origins actually go back to traditional dances hundreds of years earlier, and there is a fascinating story at . As usual, I digress.

So what am I going to do with all this energy? I look around to see the magnificent accomplishments of other women that have survived horrific experiences with cancer, and mine seems like a sniffle in comparison. Some started international movements, nonprofit organizations to support education, where do I go with this?

As much as I enjoy being on stage, I know my best work is done when I work one on one. Right now I feel the faster I can get back to school, the more I can learn every day and better help each patient I see. It’s no different than what I’ve been doing for the past 15 years or so, but it’s with a different perspective, a deeper compassion, a broader understanding and empathy. Before this happened, I was never sick, never had to chose among activities based on my energy reserve or physical limitations. So allow me to leap to my soapbox for a paragraph or several…
Let me tell you, feeling lousy sucks – literally. It pulls you away from fully enjoying life and the people around you, so the earlier you can prevent it, the easier it will be to get back on course. A patient described it perfectly the other day. She is in her 20’s, reasonably healthy, but felt she wasn’t participating in her life – it was just “blah.” She was functioning and getting through day to day, but mildly achy and tired, without excitement or interest in much, and no “forward thinking.”

The good news is that she has the foresight to recognize early that something has gone awry & she is popping back very quickly. Had she not, in another 5 or 10 or 20 years she would be like most of the women that come in, overwhelmed and exhausted, frustrated with increasing medications, needing months or even years to unravel the complexity of all the things that are malfunctioning. It’s not hopeless, but the longer we wait, the bigger the mess and the more work it is to clean up. And being so pooped from feeling lousy compounds the effort required to get well.

Just like it’s easier to lose the first 2 pounds than wait till it’s 20, don’t wait to take care of your health, no matter what stage. Our “health” culture trains us to cover symptoms with a quick fix, or “wait and see” but by the time you have a symptom, something has been wearing away for a long time.

Recently an elderly patient was not getting any relief from her back pain after a few weeks of treatment, although she used to respond within that timeframe. Long story short, after a series of deeper questioning, she reluctantly gave me the details of other recent symptoms that were obvious red flags that her low back pain could be due to cancer. I convinced her to immediately call her doctors, which she did, although in the past they had minimized the significance of her symptoms. Because she had been convinced that her symptoms didn’t mean anything, she was embarrassed to “complain” about them to anyone else – including other doctors.

Even with my referral, her GP said her heavy constant rectal bleeding was probably because she took a lot of meds and didn’t eat enough vegetables, and an MRI wasn’t important. The advice was to improve her diet for few weeks, and if she didn’t improve, they would consider a CT scan. Wait and see… Fortunately, with the new information, her previous surgeon was concerned, scheduled her for surgery within a couple of weeks, and what the GP dismissed as a hemorrhoid was actually an early malignancy. Now they are keeping a close watch and following up with the appropriate tests.

This isn’t the first time there has been a case like this, and I’m afraid it won’t be the last. I won’t mention the name of this healthKare enterprise, but this has also happened with many other providers, and as you know, that includes some of my own. I know I keep repeating myself here, but I can’t emphasize enough that when something doesn’t feel right, don’t ignore it or cover it up. Trust your instincts, listen to your body and be proactive – and if no one listens, get a second or third opinion. In the meantime, get your regular checkups – even if you feel good, eat your fruits and veggies, take your vitamins and shake your booty.

Have a fabulous weekend – this rainy weather is great for indoor projects, like cooking up a batch of healthy soup for the week (hint, hint)!
Love, Laurie

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