Summer Service Musings

I participated in a summer service at our Unitarian Universalist church in Stow on August 16^th.  Actually, I helped organize it.  I invited several people who have had cancer to share their thoughts with whoever attended the service.  In the end only two of us actually presented, which was a disappointment, but allowed the two of us to go into greater detail.  Here is what Johanna Pyle, a Breast Cancer survivor, and I had to say.

Survival Guide to a Cancer Diagnosis

August 2015

As many of you know, I spent the last calendar year dealing with a diagnosis of breast cancer.  To this day, I have trouble calling myself a “survivor”, because although my treatment was not straightforward, I never had to endure chemo or radiation, and there was never any question about the outcome.  There are so many, many people who have had to endure so much more difficult treatment, with the question of survival not necessarily assured.  Still, I have a new body as a result, and any journey through the Land of Cancer is never easy, no matter what the circumstances may be.  I would like to share with you some of the insights and lessons I have learned, a “survival guide” if you will, perhaps a “pay it forward” gesture in a small way.  Going through cancer has allowed me to gain an exquisitely heightened appreciation of all the love and blessings that I have in my life, and that was the most surprising part of the whole journey.  I would never wish a diagnosis of cancer on anyone, but some of you are surely and sadly going to receive that diagnosis in your lifetime.  And in many ways my life is better for it, and a large part of me is grateful for having gone through it.

Part I:  Getting the diagnosis

1. Breathe:  I will never forget the phone call in which the surgeon told me that the biopsy came back showing cancer.  This sounds like a cliché, but I truly felt like time stood still, and that the air had been sucked right out of me.  I was totally unprepared for this, having had “lumpy breasts” all my life and always had negative biopsies.   After she talked for a while, and we made an appointment for the next day to go over the pathology report, I hung up and sat on my couch for a long time, awash in a feeling of panic and despair.  My first thought was “I’M ALONE”, because I don’t have a spouse or partner in my life, and it took me quite a while to get past that thought process.  But finally, I remembered to take some deep breaths, and slowly it came to me:  I’m not alone.  I have 3 wonderful sisters, countless friends and several “best friends”, and I have this church.  So I picked up the phone, called my sisters, and started the journey.

2.  Reach Out:  My initial instinct was to keep the diagnosis a secret from most people.  I’m not completely sure why,  perhaps because talking about it made it real, maybe because I felt somehow I was to blame, but for whatever reason, it took me a while to share my “news” with people.  Telling my two daughters was by far the hardest part.  But once I started telling people, I began to find out many important things such as how many people have dealt with this and had so much wisdom to offer, how there exists such a wonderful place as The Healing Garden right in my back yard, and that it WASN’T my fault, etc. (although, secretly, I still blame the fact that I heated up so many leftovers in Tupperware..sheesh.) Reaching out to people meant the difference between trying to appear strong and composed in the face of total terror, and finding people who knew exactly what that terror felt like and who helped me gain control over that terror.  And more importantly, I found out how many people were there to help me go through this, which again reinforced the new understanding that I wasn’t in fact alone.

3.  Take your time to process information:  Although some people don’t have the luxury, there was no particular hurry for me to make any decision.  The first course of treatment, lumpectomy and radiation, was an obvious and clear choice for me.  After the second surgery, where they STILL didn’t get clean margins (happens more often than you think – What? on Grey’s Anatomy they always get clean margins!) I was faced with a more difficult decision.  Try for a third time to get clean margins?  Have a single mastectomy, double mastectomy, reconstruction, what kind of reconstruction, no reconstruction but beautiful tattoos instead?  Again, referencing #2, I spent a long time reaching out to people who had gone through this, and listened and pondered, and pondered some more, relying on my long-standing mantra that “the answer will make itself known.”  And eventually, it did, and I had a single mastectomy with reconstruction.  “..Don’t let anyone bully you into scheduling surgery unless it’s a true emergency.  Say you need at least a day to think about it.  Talk to whomever you need to, in order to process as much as possible about what’s going to take place.  Nobody can take your power away unless you allow them to do so.” -- It’s Just a Word, Elizabeth Bayer

 4.  Trust your instincts and make sure you are heard!  Once you have decided on a course of action, the next step is to decide on a team of doctors.  This was a really difficult step for me, because all of the doctors seemed to know a whole lot more than I did, and they all came with great recommendations, etc.  Plus, I didn’t want to offend anyone J But it came down to one thing:  who listened to me, and made me feel heard?  What did my instincts say?  When I thought in those terms, the answer was clear, and I was able to both decide on a course of action, and make great choices regarding doctors. 

5.  Get help formulating questions.  One of my greatest sources of support was my sister Tory, who happens to be a nurse practitioner.  Before I met with several different teams of doctors and was trying to decide what to do and who was going to do it, she and I made a phone date to formulate questions.  I did this with a couple of other friends as well, and by the time I went shopping for doctors, I had an organized, double-spaced, printed out list of questions that addressed all my confusion (i.e. what does X mean?) and concerns, and allowed me to take notes with each doctor for later comparison.  Also, bring someone you trust with you, to be an extra set of ears.  This is very important!

Part II:  The surgeries.

6.  Tolerate the unknown:  As Rachel Naomi Remen said in my first reading,”...Wisdom comes most easily to those who have the courage to embrace life without judgment, and are willing to not know, sometimes for a long time. “For me, this meant again letting go of control, because as I entered into the biggest surgery, the single mastectomy, I had very little knowledge really of what was going to come after.  I had to simply trust that I made good decisions, and leave the rest up to the doctors.  I didn’t know how much pain to expect, what I would look like, and how long it would take me to be back to my “old self”.  It really required me to live in the moment, take each day as it came, and let the journey unfold.  And, as I got better and back to my routine, I had to think of that in the bigger sense as well.  I didn’t know if or when I would meet that significant someone and how they would react to the changes my body experienced, or whether or not the cancer would come back.  There are so many things we just can’t know, and I have become much more willing to tolerate this state of unknowingness.  And, reducing any specific expectations made adjusting to the resulting reality that much easier.

7.  Think positively in every regard:  Prior to my first surgery (and now, I am up to five…), I met with a psychologist who specializes in preparing people for surgery.  She helped me develop a meditation that involved visualizing in a very positive way what I wanted right after the surgery, a week later, and then several months later,.  I also wrote healing statements with her, which again stated things in a very positive manner.  Not, “I don’t want to feel pain”, but “when I wake up I will feel comfortable and the nurses will be helping me.”  The nurses in the operating room read these statements to me while I was under the anesthesia. She also encouraged me to send out a request to friends and family to send me their healing thoughts and prayers as I went into the surgery.   At first I was pretty uncomfortable with this, feeling like I was drawing too much attention to myself and putting a burden on my friends and family.  But in every case, I have had a remarkable outcome with very little side effects from the anesthesia and speedy healing.   And knowing that so many people were holding me in their thoughts and prayers was an incredible, wonderful feeling.  

8.  Let go of “shoulds” – make life as easy as possible, and ACCEPT HELP!  This was very hard for me to do.  I had planned to accomplish a number of things during the upcoming school year, and was reluctant to let anything go. (I.e. working full time plus tutoring on the side, teaching a graduate course, singing in two choirs, etc.)  Needless to say, it became very clear that the only thing I really had to do was go through this Cancer Journey in the best way I knew how, and that included letting go of all the “shoulds” and sources of stress in my life.  There were still many things I wanted to do, but I was the only one telling me what I had to or didn’t have to do, and it was incredibly liberating.  And as a very good friend said to me, “don’t say no to anything!”  People enjoy helping other people, and if there was ever a time I needed help, this was it! The combination of relieving myself of stress and accepting help was a very important part of my healing process.  Which leads me to #8:

8.  Allow yourself to heal: Again, this was hard for me.  In case you haven’t noticed this about me, I have very high expectations of myself, and I’ll be damned if I was going to let a little thing like breast cancer get in my way.  But after the surgery, I wasn’t allowed to lift my arm above my shoulder or lift anything heavier than a gallon of milk for a month.  That felt like a looooong time to me.  But as I’ve said to many people, I was finally able to “embrace my inner couch potato”, and slip into what I came to call my healing cocoon.  Many people have commented that their brains are the last thing to heal, and in fact I had a lot of trouble after all the general anesthesia with word finding skills.  My daughter likened it to Mad libs:  “Sarah, can you get me the […um…noun] that I left in the [...um…another noun.] “  I was quick to get frustrated with my temporary loss of brain power and limited mobility. But many, many people kept telling me, “you have been through a big deal, you are allowed to have healing time.  Tolerate the unknowing of when you will be completely healed, and allow yourself that time”.  Easier said than done, but looking back, I was glad to have people saying that to me over and over again.

9.  Expect that your life will be different, no matter what the outcome:  As I approached the reconstruction surgery, I kept tormenting people like my sister with, “I wonder what I will look like??  I wonder what I will feel like??”  She finally said, “Look, no matter what you will look like, it will no doubt look and feel different from what you are used to or to what you are expecting.”  This was very true.  There is no way for anyone to know what the future will hold, and in this case, it was clear that it was going to be different, no matter what.  I had to really think about that, and understand that yes, it was going to feel different and that was ok.  It may be better, who knows?

10.  Always remember that you are surrounded by love.  I have never felt so loved in all my life.  The thoughts, prayers, cards, meals, prayer shawls, books, music, movies, rides, and company that so many people shared with me were in unending supply.  I have always believed that showing and feeling love was a critical component to a good life, but having cancer truly brought that home to me.  “The realization struck me that the love is everywhere for everyone, all the time; it’s just that most people aren’t looking for it, so they don’t [know] it exists.  It does, and once you know it, you will see it all the time.”  -- Elizabeth Bayer  I knew that love existed, but I know now that I never truly understood the power of love.  It is transformative and healing, and if it took cancer for me to gain that understanding, then I am grateful for it.  I want to leave you with some final thoughts from Elizabeth Bayer:

“Love is everything, yet adversity is the greatest teacher.  So love adversity, and know that there are always gifts.”

“It can show you how many people in the world love you.  It can teach you compassion, for yourself and for others.  It can put you in tune with the strength you never knew you possessed.  It can propel you to do all the things you thought you had time for, but never did.  It can help you cherish the present moment.  It can assist you in offering forgiveness and being forgiven by others.  It can teach you humility and gratitude.  It can help you ask better questions.  It can move you toward a life with more meaning.  It can raise you up to a higher level of spirituality, even if that was never part of your life.  It can help you let go of things that are not truly important to you.  It can make you a better person, for yourself and the world around you” -- It’s Just a Word, Elizabeth Bayer

“In my moment of greatest vulnerability, I learned to embrace the journey, so I could truly heal and grow.  It doesn’t mean that there haven’t been moments that suck – there have been, most assuredly.  But I’ve learned about the power of will and intention, and how to carry faith deep in my heart.

From It’s Just a Word, Elizabeth Bayer

My contribution.  You may recognize the first part of it as having been part of this blog back in 2013

The Unexpected Benefits of Having Cancer

(Written Spring 2013 in the aftermath of a
Stem Cell Transplant November, 2012)

One.  Cancer cures you of any sense of invincibility.  You, who may have been an aggressive athlete, who may have been a competent professional, who may have been a leader in your town, are suddenly unable to do much more than get to the bathroom and keep yourself clean.  You who excelled at gathering and retaining information, are suddenly barely able to read more than a page or two, and then often with next to no comprehension.  You, who always cared for and provided for others, are now one that others have to take care of.  Yes, you never tried to lord it over others, and yes, you tried to act like an ordinary person, but suddenly you realize that your self-image was based on the ability to get things done, to provide, to care for others.  Without that capability, who are you?  What do you bring to the table?  Forget about invincibility.  Your essence now has to embrace vulnerability.  You have to accept that you are a mere mortal.  You were all along, but cancer has a way of hitting you upside the head with that fact.

Two.  Cancer opens you up to emotional expression.  When you are lying there 9 days after your stem cell transplant, when you have no immune system and your body is attacked by a raging infection, your gratitude that the medical staff have the tools and the insight to pull you through, leaves you in tears as you try to thank them.  You are unable to say thank you to your favorite nurses without springing massive eye leaks.  You have found out what it means to “walk through the valley of the shadow of death”.  When you tell your family what that felt like, you are overwhelmed by the wonder of having survived the ordeal.  Maybe you thought you had an appreciation for the value of life.  Now you know how truly glorious life is.  Nothing like almost losing something to awaken you to its value.

Three.  Cancer makes you realize how key a role your family members play.  The spouse who drops everything to be at your bedside and then turns the house upside down to make it germ-free enough for an immuno-compromised person to come home following a stem cell transplant.  The daughter-in-law, who happens to be a doctor, who interprets all the medical terminology and explains the doctor’s strategy because she has access to the doctor’s notes.  The siblings who come in from across the country to share your experience.  The kids who take turns being with you because they have young kids, and nobody under six is allowed on the hospital floor.  Family is key.

Four.  Cancer makes you acutely aware of all those people who really want to help you.  Sure you had teammates, co-workers, social acquaintances, and members of the various communities you belonged to.  But you only ever expected family to rally round when the going got tough.  But all those different people helped out driving, making meals, doing the chores you used to do, caring for the dogs, …  All those different people responded to the LotsaHelpingHands appeals.  You may have thought you were a lone ranger, but in fact, you were a mouseketeer.  All those other mouseketeers are right there to help you and to plug the gaps your disease has created.  They say it takes a village.  And that is not just to raise a child.  It is to respond to one laid low.  Another nuance to add to your conception of yourself.  Someone who has lots of friends willing and able to help out in a pinch.  You never knew!

Five.  Cancer makes you appreciate the caring professions: doctors, nurses, people who scrub the floor.  The list starts with the doctors.  Maybe they are the ones who restoreth your soul.  But the ones who really matter are the nurses.  They are the rod and staff that comfort you.  They are there to help.  That’s their job!  And they do it so well.  The little tricks they have from seeing how others cope, such as the lotion that relieves your raging rash.  Or the cream that makes bi-hourly diarrhea bearable.  Or the hot blanket that brings you back from the bone-crushing shivers.  And unlike the doctors, whose first names you only see on medical bills, you only know the nurses by their first names.  Is this an attempt at anonymity?  Or is it a shield so that you can’t act on your crushes in the outside world?  Whatever, the nurses are your connection to humanity that pulls you through, that gets you through the valley.

Six.  Cancer makes you appreciate medicine, both the science and the practice.  You are exposed to the practitioners who decide what you have and how to treat it.  They carefully feed you enough information so that you can understand and cooperate in the treatment.  They assess your physical symptoms throughout your treatment, and react to how the disease is responding to their treatments.  But you realize that there are many aspects of the medical profession that you never see, but which you totally rely upon.  Pathologists read your specimens and determine if the key markers are going in the right direction.  Research scientists perform the basic research that leads to advances in treatment regimes. Clinical doctors perform the studies and clinical trials that demonstrate the effectiveness of new treatments.  Engineers and technicians create the machines that see into your body, measure the key characteristics of your blood in 45 minutes, give you color images of your heart and lungs in motion, and separate the elements in your blood so that stem cells can be isolated.  You owe your continued life to both the science and practice of medicine.

Seven.  Cancer lets you know how much it helps to express yourself in writing.  Beth Israel Hospital publishes a Book of Writings each year with writings from various cancer support groups.  As many others who have written for the Book of Writings, the written word helps you form vague feelings into crystalized emotions.  You have never been through such an experience, and you want to share that experience with others.  Writing helps you share, and in doing so, helps your own realization of what you have been through.  It may still amaze you that people care to read your drivel.

Eight.  You have reasons to be thankful.  You may have cancer, but there is always someone who has a worse case than you do.  During my stem cell transplant, I heard of two people who had stage 4 cancers.  Before I got home they were both dead.  As you get up off your hospital bed and begin walking slowly around the ward, you see others at different stages of their treatment, with other types of cancer, and different intensities of cancer.  You may have been feeling sorry for yourself, but there are others far worse off than you.  You may get there eventually when your disease reoccurs, but for now you are in comparative easy street.  So cancer has a way of making you thankful, even in the face of adversity.

Nobody chooses cancer.  Everybody fights cancer as hard as they can.  But you learn something from cancer, and it reveals a good deal about your life that you may have been unaware of.  Let’s hope that those revelations are ones you can live with.

The above was written while I was basking in the glow of having Multiple Myeloma in remission.  I had just had a stem cell transplant and a friend who underwent a similar procedure was disease-free for 8 years as a result.  But my disease reoccurred in less than two years, so the glow did not last very long.  A friend recently asked, are there lessons you have learned from the return of Multiple Myeloma?  Since the doctors are still working to bring the latest outbreak under control, I suspect I am not finished learning lessons.  But here is a shot.

First, there are no promises.  I certainly expected that the stem cell transplant would last longer than 21 months.  I know they said the effects could be from 0 to N years, and N is not yet known because there are people who have not had a recurrence.  But I had expectations anyway.  Getting a near-fatal dose of Melphalan (a derivative of mustard gas), is no fun.  Yes, the stem cells are miraculous in their ability to reestablish your blood-generating system.  Yes, the caring professions are very good at their jobs of pulling you through.  But the basic dose is not something one would undergo for recreational purposes.  Whatever is the underlying cause of my disease must be pretty aggressive to come back so soon.  The doctors say their objective is to find a combination of medicines that keep the Multiple Myeloma under control, to make it a chronic condition, not a fatal disease.  The idea is to keep you alive and kicking long enough for something else to take you out.  After all, we don’t get a perpetual ticket.  If there is a promise, it is that eventually your days will come to an end.

Second, what worked before may not work a second time round.  Cancer is a protean disease that can change over time to overcome the forces arrayed against it.  In the summer of 2012 a three-drug cocktail brought my key marker (Free Lambda) into normal range in 4 cycles.  I have just finished my 4^th cycle of that same combination of drugs, and my latest reading is still 60% over the top end of the normal range.  Luckily there are a number of new drugs that are available when the current drugs cease to be effective.  But you want to keep those drugs in reserve, as they too may become ineffective over time.  You want to have spare arrows in your quiver.

Third, having a compromised immune system is no fun.  I get colds at the drop of a hat.  Or rather, at the sneeze of a grandchild.  The first year after my stem cell transplant I ended up in the hospital twice.  Both times it was not long after spending time with my grandchildren.  I thought swearing off babysitting for grandchildren between October and March was sufficient.  But this summer I got a cold from a grandchild who had barely more than a slightly runny nose.  I asked my oncologist if exposing myself to the kids deliberately would help beef up my immune system.  He said there are 600 rhinoviruses that cause the common cold.  If I have antibodies for 6 of them instead of 3, it won’t make much difference.  So do I have to swear off grandchild babysitting year round?  Or do I perform experiments to see if it is holding them, or reading stories to them, or giving them baths that cause the subsequent infection?  Swearing off grandchildren completely is not an attractive option.  Not an option I want to contemplate.

Overall, I think I still have many lessons to learn from the second stage of my cancer.  The lucky thing is that throughout my recurrence, I have been feeling good.  The symptom of the first stage of Multiple Myeloma was compression fractures of my vertebrae, which aren’t very pleasant.  Luckily, even though my Free Lambda reading got to be 74% of the original reading, I had no symptoms this time round.  Yes, Multiple Myeloma is an incurable, inevitably fatal disease, but so far it has not felt that way.  Multiple Myeloma is like Life itself: an incurable, inevitably fatal condition.

We both thought the service went well, and we both gained tremendously from having to prepare for it.  The people who attended the service had lots of things to say about their own experiences (first or second hand) with cancer and questions about our reactions to our disease.  So overall, it was a good thing.