Monthly Archives: January 2013

The power of positive visualization

Some months ago one of my beloved yoga instructors (Jay Yogacaps) suggested that I utilize visualization as part of healing. He referenced a study in which asthmatics who engaged in guided imagery exercises were able to reduce intervention (asthma medication) even though actual pulmonary function did not change. Participants also experienced less anxiety and depression, so one can conclude that it may have been perception that was actually altered. At any rate, although Jay allowed that lung cancer was a different beast from asthma, he felt some positive (and aerobic!) visualization might be worth a shot.

I began this practice that very night, deciding that I would include two friends who are also battling lung cancer in my mental exercise. Initially I imagined the three of us, hand in hand, running along a beach, the waves lapping at our toes. But I quickly switched it up, as we sped through meadows, pebbled paths, and over branches on the forest floor. We climbed trees, dove into a mountain pool, resting for just a moment on some stone ledges. And then, we ran some more–ever faster until our feet left the ground. We were flying.

Remarkably, several days after my first visualization of this sort, I received a card (created by the folks at storypeople.com) from my friend Ginger.  It would seem she had read my mind:

flying001

 

 

 

 

 

 

 

 

 

 

 

I’ve kept up this practice for several months now. It is the last thing I do before I fall asleep each night. Thao, this one’s for you:

We walked, we ran, we flew. We lay on a rock with some lions, because we were not afraid of anything. We felt the warm air, the moon on our skin, the sound of all of life around us. At some point we decided to fly away, and one lion rolled on its back to watch us go. We flew and flew, with the air washing the cancer right out of us. It fell from our noses, our ears and our mouths, and it looked like burned diamonds.

 

Oh, so much on my mind

But that’s not a very good excuse for keeping it all to myself. Time for an update!

Let’s see; it’s Sunday and I had my second round of chemo on Thursday after getting the okay from the allergist on Wednesday. Basically, the urticaria (hives) were yet such a problem, that it wasn’t possible to do a proper skin patch test—I was simply too reactive. So I was rechallenged orally with decadron (dexamethasone–the steroid) and watched for an hour. I felt my eyes getting a little puffier, but it wasn’t obvious to the allergist and certainly not concerning. And given my description of my symptoms post infusion, he felt I was at a very low risk of being hypersensitive to the carboplatin.

Before bedtime I took my second decadron, a Zyrtec and a Claritan (antihistamines); ditto in the morning. We dropped Peter at school and headed straight to the hospital. I had labs (they looked great) and then it was off to infusion where I was given the usual dose of Alimta but less than half the amount of carboplatin that I’d had four weeks ago, and delivered at half the rate. A nifty little shut off valve was attached to my IV and an extra bag of saline hung just in case. However, the whole event was issue free.

And, hallelujah, I still feel good. No nausea, no obvious additional neuropathy, no facial numbness. Pelvic floor seems to have settled down as well. So, aside from some fatigue, it’s an entirely different situation than it was after the first round. This likely means there will be continued dialogue as to whether it is appropriate to bump my dose of carboplatin up again, but as I have a scan in two weeks, we won’t just be shooting in the dark.

I’m highly encouraged about my physical state and now just have to keep focusing on the mental aspects of this battle. Again, I’m getting there; really working hard on staying positive and hopeful both. Of course, not feeling poorly is a real boon, and I am incredibly grateful that I’ve been able to skip right over the unpleasant side effects this cycle.

What else is on my mind?

We are just winding down with Peter’s applications to private school. Last spring, when I experienced my first liver toxicity, I started to get a little panicky about Peter’s future. Of great concern is the fact that David is often away on business; a situation that has been difficult for me to navigate but which is simply unimaginable if I were to pass away. After a bit of serendipity (being seated next to a bright young thing from Phillips Exeter on a plane ride), I began to research the private schools in the area and decided that this was an option worth exploring.

It’s been a big process and crunch time coincided with my switch-up in therapy. However, in a week and a half the window for admissions will close and we will sit back and see what happens. It is not merely acceptance that is needed; we would require a substantial financial aid package so there are lots of unknowns. However, imagining both the potential opportunities as well as the extensive support system that boarding school could provide for Peter, I am hopeful that this shall become an option.

Also on my mind, the Lance Armstrong confession. I watched both segments and derived no pleasure from the humiliating spectacle. I could, however, relate to at least one claim he made; how it was only after battling cancer that he became a fierce competitor and that this was due in large part to the survive at any cost mentality.

I get that, and the truth is, all sorts of ‘banned substances’ are part of the cancer arsenal. It is possible to see how a line could be crossed.

However, what I will never understand is his willingness to lie, cheat and to destroy the reputations of others. That pervasive flaw can only be attributed to a wanton lack of character and I doubt that he will ever be self aware enough to realize all of the damage that has been done. I will still wear my LIVESTRONG bracelet though and support the charitable aspect of the organization. It is not about the bike, and it is no longer about the man. Originally a slogan cooked up by NIKE in a clever marketing campaign (and co-opted by cancer survivors everywhere), live strong is now about believing in myself.

And one more thing. Please keep my dear friend Thao in your thoughts and prayers. She is at a tough place where options are few and yet she is not ready to stop fighting. What Thao wants is one more chance to get ahead of the cancer. May she get it.

An unforeseen delay in treatment

Wednesday should have been the day of my second infusion. Although I was still experiencing some lingering peripheral neuropathy, I was on the fence about continuing with the carboplatin. The primary reason for my indecision was the fact that I had begun to notice a positive difference in the symptoms of my lung cancer.

As I noted previously, the dexamethasone  significantly reduced the inflammation in my lungs. However, once I’d tapered off the steroids, both my cough and the bronchorrhea returned with a vengeance. And then, starting a week ago, I stopped coughing during the daytime and the production of fluid at night went down by half.

At my appointment with Dr. Shaw prior to infusion, she reiterated that the median progression free survival when alimta was combined with carboplatin for the first four rounds was double that of alimta alone.

Confusing the matter was the fact that aside from the neuropathy in my hands and feet, the issues I had described following my first round of chemotherapy were anything but textbook. As we talked some more, Alice (Dr. Shaw) seemed to feel that the pelvic floor symptoms may have had their origin with the urinary tract infection, but as I spoke again about my facial numbness and difficulty swallowing, she began to wonder if those symptoms might actually represent hypersensitivity to the platinum agent.

After more conversation (and a quick phone call to the allergy department) it was decided that the most prudent course of action would be to schedule a consultation and a patch test prior to any further infusion. Should I prove to be hypersensitive to the platinum agent, there might be the possibility for desensitization; I would be admitted to the hospital for a carefully monitored and very slow infusion. If  the patch test was inconclusive, we would consider a significantly lower dose of carboplatin.

Allergy testing is scheduled for Wednesday with potential infusion the following day. And it would seem I will have a lot to talk about when I see the allergist:  I had taken three dexamethasone in preparation for chemotherapy, and I subsequently developed both an itchy rash and swelling in my cheeks and above my eyes. Allergies to oral steroids are not commonplace, and would be a bit ironic, as the steroids are administered to help stave off an allergic reaction to the chemotherapy agents. And just to keep things interesting, yesterday I developed  a rather uncomfortable case of oral thrush; likely also related to the steroids.

Hopefully we will arrive at an answer to all these questions rather quickly. I am eager to get back on track with treatment.

Still time

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Well, somehow, someway I just haven’t gotten around to posting photos from our Thanksgiving trip to Marfa, Texas. It was, as always, a beautiful break from reality. Not just a change of locale, but a slowing down of time that is one part location—days really are longer at that latitude—and two parts attitude; we call it marfa-time.

Also of note, I marked another milestone while in Marfa: my birthday. Fifty three freaking years old y’all.

Damage control

I am still experiencing significant peripheral neuropathy. Specifically, decreased sensation in my fingers (such that buttoning my coat is difficult) and my toes as well. Thankfully, my face–nose, tongue, throat, lips, are just about back to normal. However, there is one uncomfortable detail that I have not yet shared:   the muscles of my pelvic floor have gone bonkers:  uncontrolled muscle contractions every few seconds accompanied by burning pain. The level of discomfort verges on extreme and is the sort of thing that, should it continue unabated, could just drive me crazy.

This unpleasant scenario seemed to begin with a urinary tract infection on Christmas eve. I had a previously scheduled appointment with a urologist two days later, and I described the sensation to him. At that time we both felt it was related to the UTI. However, even after the infection cleared, the urethral spasms continued. Before long, the neighboring muscles got on board (yeah, those muscles). I contacted Dr. Shaw and allowed that this might in fact sound crazy, but that it was very, very real. She prescribed neurontin, which has helped dull the burning pain but had no impact on the contractions.

I have looked online but found very little to corroborate my experience. Certainly the fact that I had four rounds of cisplatin and taxotere (both highly neuropathic) in 2005 made me more susceptible to subsequent peripheral neuropathy. And it is not without personal precedence. Platinum has the potential to be the gift that keeps on giving, with progressive symptoms of neuropathy weeks to months after the final infusion. In November of 2005, a little over two months after my final dose of cisplatin, I experienced the very same situation; burning sensations and extreme spasticity–also referred to as hypertonic muscle spasm–in the perineal region. I was so miserable (and freaked out) that I ended up in the emergency room at MGH. There were no findings, other than the fact that I had recently had a urinary tract infection. The discomfort continued for several more weeks and then finally disappeared. At that time, it never occurred to me that my symptoms could represent peripheral neuropathy.

As to why it has affected my pelvic region, I can only suppose that there had been previous injury to the nerves serving that area. I joked with Dr. Shaw that the 10 pound 4 ounce baby might have been a contributing factor. Further research revealed that there are certain risk factors for pelvic floor neuropathy that are associated with childbirth. High birth weight (that big baby was not delivered by cesarean section), forceps delivery (first birth), extended and active second stage (first and third labors).

On Wednesday I have an appointment with Dr. Shaw followed by my second round of chemotherapy. The data  suggesting that progression free survival is longer when Alimta is combined with carboplatin is persuasive. If the neuropathy has cleared up by then, I will consider going with a reduced dose of carboplatin. However, if the pelvic neuropathy continues, I will choose to go with just the Alimta.

Ultimately, I value quality over quantity.

Resolve

As far as New Years Resolutions go, number one is a given: I will survive.

However, it’s a bit solemn and I feel the need to inject some whimsy and wild impracticality as well. So, here we go:

In 2013 I also resolve to:

1. Ride an elephant

2. Travel to Iceland

3. Stargaze on a clear night in the desert

4. Attend an opera

5. Swim in a warm ocean (hello equator!)

And you? What are your intentions and/or planned adventures for 2013?

A little help from my friends

I have the greatest friends. Some old, some new, some whom I know only through this blog or my online support group. Each and every relationship enriches my life; when it comes to friendship, I am a wealthy woman indeed.

In this time of fresh challenges, my friends have played an important supporting role. Knowing that I have at times been overwhelmed, they have helped us make arrangements for additional help when David is traveling. A special friend has set aside some of his Hilton points in case an overnight stay in Boston is necessary. Several days ago I received not one, but two beautiful flower arrangements in the same day from the same friend. “Just a little color to brighten your day!” read the first enclosure. Several hours later some beautiful roses were delivered, with another note enclosed: “A little more color–and hopefully some fragrance too!”

fresh blooms

fresh blooms

A dear friend who is also battling cancer and who has availed herself of alternative treatments sent me a card with a generous check, so that I can explore the same option. Yet another friend made arrangements for me to receive counsel on a matter that was troubling me, and she picked up the tab.

All of the emails, cards, messages, phone calls and comments mean the world to me—thank you for taking the time.

I’ll close with a quote about friendship that sort of says it all. The author is Jon Katz, who has written a lot of books about dogs (and as dogs are man’s best friend, Mr. Katz probably knows a thing or two about friendship):

I think if I’ve learned anything about friendship, it’s to hang in, stay connected, fight for them, and let them fight for you. Don’t walk away, don’t be distracted, don’t be too busy or tired, don’t take them for granted. Friends are part of the glue that holds life and faith together. Powerful stuff.