Fatigue . . . and other side effects

I'm tired, bone tired, today, and I'm sure it's the chemo and nothing more. The chemo nurse told me that a few days post infusion I might feel "flu-like symptoms," aches and pains like the flu. I don't feel achy, but I've felt increasingly tired and sleepy yesterday and today. I don't feel like moving, but resting doesn't really revive me, either. I remember Leroy, in his blog last fall, referring to a tiredness, a fatigue, that no sleep can resolve. I didn't feel that degree of tiredness during my first chemo regimen, but I surely am now.

The good news? Unlike with the first chemo regimen, I can drink cold beverages, a great relief, and stay hydrated more easily. My appetite is marginally better, and I feel less vague nausea. Don't know how that will change when I stop taking the steroids, but I guess the danger of nausea and vomiting is greatest for the first three days.

The other good news? We went mattress shopping this afternoon, to replace our 10 1/2 year old mattress, and it was a good shopping to do when you just want to lay down! I checked out the mattresses and Patty talked with the sales guy. I've seen the chiropractor the last few weeks for a sore spot in my back, and this week he asked me how old our mattress was. I had to confess that we bought a new TV and a trip to St. John before the mattress! At the store, they weren't busy, so it wasn't difficult to make a decision, and we will have our new mattress and a new twin mattress for Nathaniel's bottom bunk delivered next week. Resting on the job, mission accomplished!

Thinking about your comments this week, I wanted you to know that I love the suggestion of the tumor "melting, melting!" like the Wicked Witch of the West in Wizard of Oz, and even incorporated it with a new visualization that came to me. In it, the tumor shifts from being the fierce Portuguese Man-o-war I've seen since this new tumor invaded my insides, to a jellyfish blob like we see on Cape Cod beaches later in summer. Those clear jelly blobs easily dissolve in the sunlight on the beach, so this one is doing that, and melting!

I loved the music and suggestions for "Shrink that Tumor!" Lucy made up a cheer, but she can't remember the words from day to day. They are always entertaining, though, and I try to get her to chant it at least once a day. Any other rhythm or song suggestions still accepted!

And about my post on mortality this Holy Week, I was deeply moved by the sharing of those of you who resonated with what I had to say, and who could find words to articulate your own journey. Your stories and reflections enrich us all.

The waiting for Easter is almost over. May your day tomorrow be full of celebration and joy, family and friends, love and sunshine, and the wonder of life renewed.

Sunsets and Visualization

Back on October 7, I wrote about visualizing the cancer cells dancing in the sunset like Dorothy and her friends the Scarecrow, the Lion, and the Tin Man. I continue to do the visualization as often as I think of it, usually during meditation or when viewing a sunset. My image is still essentially that the cells are moving toward the sunset, a natural cell death (apoptosis), and out of my body. I have seen some stunningly beautiful sunsets over the past months, but usually when I don't have my camera handy. The sunset here was photographed from our front porch last month, and only begins to capture the colors and the beauty of this winter sunset viewed through the trees.

Sometimes the cancer cells bring their "own" images to the visualization experience, which is always a surprise, and sometimes a question. One day later in October, the cells were all backed up as if behind a locked door (like people trapped in a fire behind an exit door that won't open). I "opened" the door and watched the cells flood out, and I directed them to the sunset, wishing them "apoptosis" as they flowed. This image had me concerned about the cancer spreading quickly for a while, but with some time having passed since then, and having had a good scan in November, I'm less anxious. And, after that image, when I "gathered" the cells in my mind's eye to travel to the sunset, it seemed there were fewer cells than there had been.

In December, one morning, the cells had picks and shovels over their "shoulders" (well, where their shoulders would be if they had them! They actually do look a little like a Pac-Man, with his round body, with skinny arms and legs), and they were skipping and singing/whistling "Whistle While You Work." This image also gave me some pause, as I don't want those cancer cells doing any work but dying, but it came around the time of my day surgery to remove "the spot," so I'm hoping the work was to go into the sunset and off to the pathology lab!

This morning, the cells were in a playful mood, and they were rolling off to the sunset, and singing something. But now, despite racking my brain, I can't remember what they were singing!

After my first description of the visualization, my friend Susan H said that she imagined me waving a "magic wand" and saying "shazzam" or some such magical word. I had to admit that I don't usually see it with the magic, but everytime I visualize her image of it, I have a chuckle. And once or twice, I've had a wand to wave.

Does the visualization make a difference? I have the same answer I had four months ago. I just don't know. But visualizing the cells, and visualizing them heading for a natural cell death as they approach a gorgeous, colorful sunset, gives me some measure of working consciously to combat their spread. And that's a good thing.

Just Under the Surface

I lost it today. Had a phone call from the office manager for the new oncologist. (Did I mention that I HATE changing doctors?) It turns out that he is not willing to see me on the same day that I have the CT scan, and in fact, wants to wait until the radiology report on the scan is available. Yeeeks! That is at least three-four days . . . I've been feeling "normal" lately, feeling that I'm handling everything well, and the conversation with the new oncologist's assistant sent me into a tailspin.

So, my CT scan is still scheduled for Nov. 17, but I don't see the oncologist, Dr. J, until the following Wednesday, Nov. 22. That's right, the day before Thanksgiving. His assistant tried to schedule the appointment for the day after Thanksgiving, and I said I simply could not wait that long. "This may be my last Thanksgiving," I said to her. "I can't spend the day in total anxiety about the scan results." I haven't spoken with her before, and felt incredibly frustrated with the conversation, and with the fact that the folks in charge couldn't have coordinated the transition better. I have had the two appointments for at least a month; couldn't they have let me know sooner about the new plan? Couldn't they have let me know so that all of this wouldn't be happening just as Thanksgiving arrives?

For the last three weeks, I've been teaching, and advising students as they plan their courses for next semester. I've been talking with them about graduating next May, or December in a year, or even in four years. I've done it without thinking every single time that I hope I'm alive when this future event happens. I've been feeling good, feeling "normal" (in the new normal sense of the word), and then today I was right back in my fear and anxiety.

I've read in Leroy's blog and the blogs of others with cancer about the difficulty of waiting for test results. I experienced it myself last July when I had to wait a day and a half to talk with the oncologist after my CT, and I felt anxiety in my body like I had never, never experienced before. Then Dr. S (my former oncologist) said he could see me the same day, and that felt so much easier, more manageable. Now I'm back to the waiting, knowing already now, weeks away, that I'll need things to distract me from my anxiety about the test results.

So, all of this fear and anxiety under the surface. The new normal for me. Things seem so fine, feel good in so many ways, and then the uncertainty of my future jumps up again and smacks me in the face. And I want to say to all of you who love me and are reading this that I am feeling good. My energy is good, my body feels as if it continues, still, to heal from the surgery, but I can walk faster, longer, better than I could two months ago, and I don't get tired so fast. The little spot in my abdomen that I talked with the surgeon about a few weeks ago continues to trouble me at times, but I feel good.

It's just this pesky uncertainty, the not knowing, the not knowing what the cancer is doing. I continue to visualize the cancer dancing, skipping, flowing, moving with whatever locomotion it wants, to the beautiful sunset. What does the future hold? What wiil be the outcome of this next scan? I don't know.

Visualizing the Cancer

In two earlier posts, (Cancer: Call it Enemy or Call it Friend? and Naming the Relationship with Cancer, Pt. II, both from August), I wrote about the difficulty I was having trying to ascertain my relationship to my cancer. The "Cancer: Call it Enemy or Friend?" post drew quite a few impassioned responses. Those responses, my further thinking, conversations with friends, and meditation, have all helped me further clarify my relationship with the cancer.

In August, I was meditating and decided to "talk" to the cancer. At that point I didn't try to visualize it, I just had a conversation. I told the cancer not to rush, that there was no place in my body it needed to move to, and that it didn't need to be moving around. I told it that its presence endangers my life, and it needs to go. This may sound a little "rational," but it worked for me. And, I have to say that when I got my second clean scan, mid-September, I remembered that conversation, and had an odd feeling that somehow the cancer was cooperating, had been "listening." I was also struck that the oncologist said my cancer was "pokey." Just what I had envisioned!

In September while meditating, a visualization about the cancer came to me spontaneously. I imagined a beautiful sunset, full of reds, purples, oranges, pinks; a totally gorgeous sunset. I imaged the cells, arm in arm like Dorothy and the Tin Man, Cowardly Lion, and Scarecrow from "The Wizard of Oz" dancing and skipping and running toward the beautiful sunset. As they skip and dance, I wave good-bye to them, and say "Apoptosis, Guys!" (At some point in my wandering on the web, I learned that it's the word for cell death. Cell death occurs naturally and normally in our bodies as cells die and replace themselves. One problem with cancer cells as I understand it in my non-medical way, is that they reproduce quickly, and perhaps don't die as fast as we would like.)

Now here's another really odd thing. After writing the previous paragraph, I just looked up "apoptosis" in the online dictionary, and there is an online medical dictionary that has this definition: "Programmed cell death as signalled by the nuclei in normally functioning human and animal cells when age or state of cell health and condition dictates. An active process requiring metabolic activity by the dying cell . . . . Cells that die by apoptosis do not usually elicit the inflammatory responses that are associated with necrosis, though the reasons are not clear. Cancerous cells, however, are unable to experience the normal cell transduction or apoptosis-driven natural cell death process." I didn't know that! Here I've been visualizing the cancer cells having a "normal" cell death, when it seems they don't know how! Maybe they can learn!

So, when I meditate, or see the sunset, or think about the cancer cells, I wave to them, see them dancing into this beautiful sunset, and say "Apoptosis, guys, apotosis!" Is it working? I don't know, but I hope so. And, it has the added benefit of giving me a giggle as I imagine the cancer cells dancing and skipping into the sunset. Laughing is definitely good for my soul and my body. Bye, cancer cells!

Naming the Relationship with Cancer, Part II

Since my post about whether to view the cancer as enemy or friend, I've continued to ask the question of how to name the relationship, my relationship, with the cancer that grows within me, and the cancer left when my surgery concluded in May. The responses of those who wrote in to this blog, and those of friends who emailed or called, were helpful as I continue to struggle with question. I absolutely get the perspective of the cancer as alien, dangerous and life threatening. And I have to recognize that those are my cells inside, gone haywire indeed, but my cells nonetheless. I am coming to think that the fallacy of the question I asked last time - Enemy or Friend? - is the fallacy of thinking I have to choose.

Dualism, making things appear to be exact opposites, forcing a choice between this or that, either-or, is something we do a lot in our culture. The problem with setting up that dichotomy, I think, is that life is so much more complex than a series of opposites. So, perhaps, it is with cancer and how I view it. Yes, I want it out of my body, and yes, I want to live. And perhaps I have to assume my "spiritual warrior" self to mobilize my energy, my focus, and my immune system to give myself the best quality and quantity of life I can, even with this diagnosis.

I have a young friend who seems to have straddled the question of how to name the cancer without needing to articulate the question. Lexie is the eight year daughter of my good friend Alice, and Lexie has a brain tumor, diagnosed when she was an infant. She has had surgery, and she is currently undergoing chemotherapy, no small thing for someone so young. Lexie's Reiki therapist helped her envision her tumor and a way of getting it out of her body, and Lexie and Alice work with the image each night before bed. After Lexie agreed that I could tell her story here, she described for me her process: "First, I use lasers to blast out the cysts which are in my tumor, making it smaller, and like a donut, with a big hole in the tumor. When the donut is left, I and pac-men eat the donut together, and after a while, all that's left are crumbs. Then the crumbs are rolled into my blood, and they come out my body in my pee. At the end, I imagine a nice, healthy brain." Alice comments that "in this image, Lexie and the lasers and the pac men all work togehter to 'eat' the tumor, which implies she is somehow owning it and making it a part of her in a nonharmful way, much as we consume food and it becomes part of us. So, I think rather than just blasting it out, she takes responsibility for consuming it and digesting it and eliminating it on her own." I think Lexie has chosen a perfect way to straddle this duality, and I'm grateful to Lexie and Alice for sharing these images. For Lexie, the chemo is hard, the tumor is resistant, and still Lexie is doing remarkably well.

Visualizing the cancer in order to mobilize the body's defenses was a technique proposed a number of years ago. The first proponents I know of were the Simontons. Even though I didn't have cancer at the time, and didn't know anyone close to me with it, I remember reading about their success in getting people to image the cancer, and then to use their body's immune system to fight the cancer. In the process, patients were asked to image the cancer, and also to image their immune system fighting the cancer. As I recall their approach, there was something organic about their thinking because it was using the body's natural defenses. I also like the idea that healing doesn't come just from the chemotherapy, and the efforts of others in reducing the size of the tumor and helping the body to get rid of these dangerous, wayward cells, but that it comes with full cooperation and active participation of the person affected.

So, perhaps I'll work on a visualization that seems effective to me, and works with my body's natural methods of healing. And, I've begun a conversation with my friend who befriended her cancer, but I haven't yet asked her how that worked for her. Please respond, if you have thoughts about all of this.

Cancer: Call it enemy, or call it friend?

In his blog earlier this week, Leroy Siemens examines a posting from a mother who asks whether or not her daughter, who died from cancer, has "lost" if the fight for life against the cancer is a "war." Of course, he points out that we would not stigmatize the now dead cancer patient by saying they "lost the war," but so often those with cancer and those writing about cancer describe the fight for life as a war, a battle, a fight, and those fighting for their lives as warriors. I'm not entirely comfortable with this language, this image, although I certainly want to continue living, which would mean "winning the fight" against this gallbladder cancer.

A longtime friend who has had several different cancer diagnoses, including breast cancer, wrote to me soon after my diagnosis, and encouraged me to make ffriends with the cancer. "It is part of you," she wrote, "so why not make friends with it?"

Similar language is expressed by Dawna Markova in her book I Will Not Die an Unlived Life, where she describes her survival from a cancer diagnosis many years ago, and her discomfort with the "battle" language so typical of describing a fight for one's life following a cancer diagnosis. She writes:

When cancer first came into my life, people all around me treated it as the enemy. I was told I had to join the medical team and we'd fight together to defeat it. This was the wrong thing to say to someone who was the last one to be picked for any team. I was much happier sitting on the sidelines and encouraging the other players. I was totally unskilled at defeating anything. So, I secretly went my own way and decided that I was free to choose the meaning of the healing experience. I decided I would develop a friendly relationship with the cancer, which was something I was good at.

However, Markova does not go on to say how befriending the cancer helped her to heal from it, to move past it, to have it not take her life. Rereading this passage, I can see that one way would be to put the emphasis on "healing," not on cancer. I can also see a "lessons to be learned from the cancer" aspect of befriending it, but I don't see how that can lead to healing of the physical body. So, perhaps a part of me does want to "beat" the cancer, because I can't see how I can continue to live as long as it is in my body, and the doctors tell me that they know of no way to kill gallbladder cancer. Again rereading Markova's words, I am reminded of my competitive nature, my desire to excel, to do a thing well. But, more than being a "good" cancer patient, I want to be successful in my intense desire to have my life continue, and not to have it end with this cancer.

Battle image or friend image? Which has the potential for more healing, for me in this situation? I feel that I need to hold this question in my heart and see what answers come. While I wait for those insights, I am interested in the experiences, thoughts, impressions, wisdom from those reading this blog. And, perhaps I should call my friend who befriended her cancer and ask her how she did it.