This will be a brief post because, well, I’m tired and outpatient chemo isn’t the cakewalk I was hoping it would be (although I’ll take it over being admitted to the hospital every 5 seconds any day!).
Today I had the 4th of what will likely be a dozen or so lumbar punctures to inject chemotherapy into my cerebral spinal fluid. The type of tumor I have (had!) has a tendency to go to the central nervous system, so this intrathecal chemotherapy is done prophylactically to prevent me from getting a relapse in my brain down the road.
Anyway, while getting a lumbar puncture isn’t the worst thing in the world, it’s certainly not pleasant. Imagine lying on your stomach, unable to see what’s going on, while needles are jabbed into your lower back at unexpected intervals over the course of 15-20 minutes.
I’m on the table, and having meditated a few hours earlier and being in a slightly more mindful state, I notice how my entire body is clenched with anticipatory anxiety. My hands are gripping the pillow in front of me, and when the needle goes in, I feel myself fighting against it.
So I ask myself, can I soften to this? Even just a little? I take a deep breath and notice how anxious I feel, how fearful, even though it seems like just a small thing. I try to experience the pain for what it is, without getting caught up in my fear and aversion to it. I relax a little.
A few seconds later my whole body has tensed back up. I notice what I’m feeling, what is happening in my body, and then I ask, again, Can I soften to this?
In Eastern philosophy there is a difference between pain and suffering. Pain is inevitable. If you think you can make it through your life without feeling any pain, good luck. Pain is the needle.
Suffering, though, is everything we add to pain that makes it so much worse. Suffering is clenching around pain, tightening to it, fighting it. We can’t eliminate pain, but we can learn to reduce suffering.
So next time you are feeling pain, the next time you are hurting, ask yourself—Can I notice what is happening in my body? Can I notice what is happening in my mind?
Then, ask yourself, Can I soften to this?
***
Photo by Bandita
Suffering from a chronic (albeit intermittent) disease that involve days and days of absolute pain, I’ve come to the same conclusion. The resistance only makes it worse. Holding the suffering, even with soothing self-talk (silent if others are around) like “yeah, body, I hear you; there’s a needle in there” seems to help a lot. Remember, pain is just our body communicating that something is wrong. Staying in the reality of what it is, rather than resisting it, eliminates the body’s need to speak out louder. I hope that helps next round. *gassho*
As I read your post, I was reminded of the pain I experienced during natural childbirth and how tremendously helpful my doula was in helping me “relax” through the pain through imagery and relaxation. Maybe a doula would be an option for you during your treaments?
Oh, Elana, Thank You! THis is exactly what I have been striving for over the last couple of weeks and you just gave me the question to ask myself. So much gentler then all the other junk that keeps coming up.
After your last post I wanted to ask you amongst all the amazing people and events that led to your being cancer free, What practices did you do to help support your own healing and how in the heck did you manage even to sit in meditaton? I’ve tried multiple times only to have my mind inundated with thoughts of cancer or fear about my job which recently got cut from a full time job to a part time job and it’s scares the crap out of me that If I don’t get well soon, what will I do about insurance? How do I soften to that?
You are amazing and I am so grateful for your willingness to share what is happening for you. I hope the lumbar punctures are short lived in your treatment.
blessings and peace!
Cheryl
Hey Cheryl, don’t stress, I have a lot of those same worries (especially the insurance one). I’ve also probably only done sitting meditation a total of an hour since getting diagnosed — it’s hard to do when you’re feeling tired and shitty! I do try to be aware of my mental habits though and not get too caught up in negative patterns.
I’ve thought about writing a post going over my “anti-cancer plan” in terms of self-care stuff. Sounds like may be helpful — I will try to write it soon! Thanks so much for your comment.
I am a psychiatrist and I have lived with chronic pain for over 45 years now. I have no profound words of wisdom to share as to how to live with pain as I am still learning how to do that. But what I have to share comes from my work.
Almost a year ago now I trained as an EMDR therapist. In my travels and learning to do this one of the gems I have come across is a book by Laurel Parnell called “Tapping In”.
In my own life I am just now learning the power of BLS (bilateral stimulation) in our personal, physical, emotional and physical journey. My only regret is that I do not use it more often and more consistently because when I do I am consistently amazed at how our bodies are made to move towards health and wholeness and how BLS is one of its own mechanisms by which it does this.
Just a small thought and a resource that you too may find helpful but only when your strength returns from your most recent round of chemo.
Thinking of you and sending many positive thoughts and prayers for healing (in all the forms it takes).
Faye
Faye, wondering if you have seen app for iPad and smart phone called Anxiety Release. It combines auditory and visual bilateral stimulation. Created by an Australian psychologist (not personally known to me). I use it and some clients in my counselling practice have found it very useful.
What an extraordinary teacher and gift to the world you are, Elana! Thank you for sharing the learnings of your journey as you travel the path.
Warmest wishes for well-being,
Ruth
I just celebrated my one-year anniversary of survivorship and I still get anxious with every needle stick and port access. I can’t imagine going through your lumbar puncture. My infusion nurse (yes, I have the same one every time because of my anxiety) is wonderful in talking me through port access and makes sure I’m ready. Can they talk you through what they are doing so you have time to get to a good place in your head? Still praying for you as you continue treatment, and rejoicing in your fabulous results. Take care.
Elena,
I think it’s safe to say I’ve written an entire blog post (in my head) as a response to this post (I’m tempted to write you a long letter response, rather than a comment 😉 ) But in hopes to make you smile, I want you to thank you for sharing your words today so that they continue to live through me and my spirit– to become a part of my thoughts too. You are a beautiful reminder in the power of sharing a story. And how stories are seeds to be planted…. that grow. They can interweave themselves into the minds of others, including myself, and as if they found another home. The theme of this particular piece, pain vs suffering, is what I think life is all about!!! It;s our choices, even the smallest ones, that direct how our bodies feel. I imagine it as the gift– that of the awareness to celebrate something so simple as a deep breath. Tho I know life is challenging and every day is a conscious decision on where and how to find peace, I applaud you. Coming home tonight, a night that (in my mind) was both amazing and disappointing to me simultaneously, you, not only humbled my spirit but you also softly told my inner chatter to be quiet. Thank you for your authenticity and your fearless voice! Having healed myself from an MS diagnosis at 19 (I’m 35 today, my last exacerbation was in 2004, I’ve been medication free since 2010) I like to say, tragedy creates purpose. In so many ways, it is where we discover our greatest strengths, some we never knew we had. I know you are gonna kick your cancer to the curb. Optimistic and resilient are powerful words that are much more fitting labels for you than “cancer patient” — so own them proudly! Sending you lots of good juju, positive prayers and the continued kick ass strength to find some peace in all the pain. Why choose to suffer. It’s how I have always lifed my life too. And tonight, I REALLY needed a reminder. So, from the bottom of my heart, thanks. You are already beating this with your attitude and awesomeness. High fives and hugs, Carlyn Shaw
Great post! Any congratulations on being cancer free so quickly. What a blessing!!
Thank you for the lesson about softening to pain, Elana. My yoga instructors says this often, though no downward dog or tree pose could ever compare to a lumbar puncture 🙁
It sounds dreadful. I feel sorry for you body. May you continue to have the Eastern philosophy angels on your side, and may the pain be lessened in the upcoming treatments.
This is a powerful learning, Elana and something I have learned along the way of my journey with pain. I know that when I practiced nursing and my patients experienced some pretty awful pain, I would gently put my hand where ever the was and instruct them to breathe into it, open up the area as a way to help the pain med kick in faster and as a way to help them manage between doses when necessary. I love seeing this here … I hate the way you are having to learn it … Blessings and love to you .
Hello Elana
Not to detract from or seem to miss the point of your article, but I was wondering if Emla cream application about 60-90 minutes before the lumbar puncture would be allowed or be useful. I use it before my biweekly neupogen shots, and on my port before blood draws and chemo. It takes away a lot of the fear factor and gives me a sense of control. It only helps with the innitial stick-not with subsequent burn, but that’s quite enough to make the whole thing more tolerable.
I googled a study about emla for adults in lumbar puncture if you are interested. Here’s the link
https://scialert.net/abstract/?doi=ijp.2011.836.842
Love, Arlette
Hey Arlette, good idea, I have EMLA cream I use for port access, couldn’t hurt to try it before my next LP. Thanks for the suggestion!
Thank you for your beautifully written piece. You are a gift to all of us. I am so sorry about what you are going through, and I deeply appreciate your sharing your feelings with us.
Thank you, I didn’t realize how much I needed to read something like this.
Dear Elana/Dr. Miller:
First of all, MANY CONGRATULATIONS on your remission! I have never posted here before, but learned about your blog on KevinMD.
I have had migraine disease since childhood and have always been skeptical about “distracting” myself from physical pain, since this often only makes pain seem worse. My migraine headaches are not usually 10 on the pain scale, but they are relatively frequent; when I do have a severe one, I go home, drink skim milk and eat white carbs (which I don’t regularly eat, but migraine makes me crave serotonergic foods), and lie down in a dark bedroom, concentrating on the pain until I fall asleep.
Although not a healthcare professional, I work at an academic medical center. In recent years, the medical center decided to build a new children’s hospital and welcomed employee comments on its physical design. At the time, I was acquainted with a few people who worked in child-family life and child psych due to some volunteer work I did behind the scenes, and submitted my comments to them as well as through official channels. One of my main concerns was that they would select bright colors to decorate patient rooms, which is almost a cliche’ at peds facilities. To me, color scheme was important because as a child, just thinking about certain bright colors during a migraine was enough to cause nausea. If bright colors nauseate migraineur children, what do they do to children receiving oncology treatments? Fortunately, the hospital surveyed several groups of peds patients as well as their parents, and ultimately selected a combination light/bright color palette. Perhaps in response to one of my other migraine-inspired suggestions, they limited fluorescent light in patient rooms and maximized natural light.
Continue to stay well!
This is really such a good post for anyone who deals with anxiety, in general. I used to just worry a lot about things in life. Now, I struggle day to day (silently) with anxiety. Some days are really awesome. I can get my kids to school, run errands and the anxiety is a quiet hum. Other days, my chest is tight and my body is practically vibrating with nerves… Maybe I just need to soften to it instead of feeling like I am pushing against my own self. Blah blah blah. You are awesome and thanks for teaching us even when you could be watching Housewives and eating chocolate.
Sending you strength and love to help lessen the pain. Maybe, when you are in the process of receiving the chemo you can wrap your fears around us and we will each take a piece of it to help you along.
Fondly,
Barb in Minnesota
Blessings to you
I have stage 4 breast ca. It’s freaking everywhere. All I know is that when pain or any of the things we have to do with this disease I close my eye surround my self with white light, breath, say my mantra as much as I need and take my mind to the place where I feel safe. Some times it works some times it doesn’t. In those times when the anxiety wins there is Xanax we are all human. Much love and support from all of us fighting cancer in Australia .
Namaste friend…may you be well, may you find joy and fun despite the difficulties and huge battle you face. .my thoughts are with you. You are clearly such an amazing person.
K
THAT WAS BEAUTIFUL. THANK YOU!!!
Dear,beautiful Elana, think about Xanax or Lorazepam,meds are also helpful,I am a psychiatrist ,too,and I know that You know it too.
Thank you for sharing! I love the lessons you are translating for your readers.
I check back all the time to see how you’re doing. You’re a beautiful soul. 🙂
Were you able to soften the pain, Elana? Seems like a really hard thing to do that requires a tremendous amount of focus.
I think, compared to what you are going through, a lot of us are barely suffering at all in our lives. Hope the days are getting better 🙂