Can you ever return to "normal" life with cancer?

In the first year of dealing with my diagnosis, it was so much about cancer and the treatments that recently, when life returned to somewhat normal, I have allowed myself to go elsewhere in my thinking. Once you have received a cancer diagnosis it is as if the whole world looks different. Everything looked simultaneously brighter colored and was moving faster. I felt a distance from others, just different as they went about their daily life while I was immediately contemplating my life coming to an end. 

 

And then came the treatment phase when it was hard to think beyond the physical realities of those treatments, when there appeared to be no breathing room between the visits to the Huntsman Cancer Hospital. It was the ever present elephant in the room except the elephant was sitting on my chest and unwilling to move. More than a year has passed now since my "birthday" or the day I received my stem cell transplant. To make sure to get rid of the traces of cancer that were still present in the blood and urine after the transplant, they placed me back on a fairly rigorous "maintenance" program which was not much different from the treatment before the transplant. However, after 6 more rounds of the three different drugs, the doctors finally declared that they could no longer see evidence of the cancer. In February of this year, I was effectively in what they called, Complete Response or remission in other parlay. 

This entered me literally into a new phase in life. My hair was growing back, albeit rather short still. I was back to full physical mobility. I began to earn a living again as work come to my doorstep to make me feel back into the normal world.  Both Alan and I were able to get the Covid 19 vaccine at the beginning of March. My levels of paranoia about being in the public immediately reduced and I felt excited about getting into life again, at the same time as everyone else it appeared. Looking back on it now, it was easy to slip into old ways of viewing the world and some of the color seeped out of my view. I have not been so focused on viewing every moment as a gift, of being grateful for the air I breathed in all its simplicity. 

Of course, it is a hard thing to keep living life on the edge of your seat, not sure if you are going to see another tomorrow. This is especially true if you are working towards a more long-term existence of living with the disease and seeing 10, 20 or even 30 years ahead. (Yes, I am that optimistic!).

Ready for hookup

 

                IV in place for the infusion

I was at the Huntsman hospital this week for my monthly blood work, meeting with the PA and infusion of bone strengthening drugs when a little of that wonder came back to me. Alan and I were discussing how it might work with treatments if I were to travel for more than a week or so. The good news was that she saw a way that I might take additional medications with me to make such a trip possible. 

Alan then asked a probing question. "What kind of window do you think we are looking at before we might expect the cancer to return?" Her answer pierced me to the core. "Probably about two years so this is an ideal time if you are going to do any travelling or have any plans."

In with the PA

Although I knew this was a conservative estimate she was giving to me, I was plagued with the thoughts, "What do I want to do in the next two years to make the most of this time when I feel largely normal?" It was not quite a bucket list question as I knew that once I relapsed that I would undergo even more treatment. Waiting for me in some frozen storage somewhere are enough of my stem cells to do yet another transplant. There are also new treatments available. Saying "two years" was not a death sentence so much as a reality check that the first year of treatment craziness could start all over again, that my physical abilities I was enjoying so much at this time might change back to my earlier days with this cancer. 

And so I have begun to have that bright color all around me again. I have begun to look at the world differently and I have this thirst to drink it all in again, at speed, before I just can't anymore. My mind immediately went to my children and grandchildren. This is not an easy one because they are in New Zealand which is still closed down tight because of Covid 19. However, my mind also went to far flung places I would like to explore, books that I wanted to read, connections that I wanted to make and most importantly, it went to my earthly mission. What did I yet have to achieve before I became incapacitated or died? I have already been reading a great deal more than ever lately and I am clear about what is expected of me. I am to help to strengthen individuals and couples to know who they are, to develop the ability to have the emotional or psychological resilience to face their challenges and to remain whole. There is so much work to do and so little time that I may have to do it. I have to remember that the Lord is in charge of timing for everything and that He will give me just enough time. I want to do it all, but more than ever, now more than ever is the time to get closer to the spirit so that I can prioritize and do what is best not just what is good.

https://www.discoveridentity.org/

From Blackness to Light

Recently, I had what I would call an overwhelming day in my treatments, which was a little bit of a crazy thought given all that I went through in 2020. Here was I at the beginning of a new, hopeful year at the hospital to get my weekly chemotherapy (Velcade) injection. I was given an IV and they took a number of vials of blood to check me out before starting treatment. This different nurse then arrives in the room with this tray and tells me she is there to give me my first set of childhood immunizations, five of them. Another nurse again arrives in the room with a bag of something called Zometa, a monthly infusion I receive to strengthen my bones. (On a related note, I have lost another inch in height!)

Even though I felt overwhelmed, it was hard at the beginning of a new year not to compare myself to where I was a year ago. At this time last year, I had been hospitalized because my cancer was playing havoc with my kidneys. I was at times in unbearable pain because of the lesions in my back and the fracture in my spine. I was not able to walk more than a few steps without assistance, particularly at nights if I needed to go to the bathroom. I had been on my chemotherapy treatment for only a couple of weeks. I was hopeful but frightened.

Now a year later, as I waited for the lab results to come back and my treatment to start I wandered up and down the corridors freely, with no pain. The lab results came back and my kidneys are functioning...absolutely normally. Quite the contrast! The greatest testament of my progress is learning recently that if I had not undergone treatment that my life expectancy was about 7 months. I am glad that I did not know that figure at the beginning.

So why am I about to speak about a fly in the ointment? Even with all this hopefulness and my somewhat miraculous "recovery", even in the minds of my doctors who call me a "rock star", I have recently been experiencing a blackness surround me. My thoughts have been negative about almost everything. It is not logical to be thinking this way and it has brought with it feelings of guilt. The guilt has fed the blackness with a voracious appetite. It was a recurring thought that I was upset about being upset. These feelings are a surprise to me because for a whole year I have been keeping my head above the proverbial water line. So what gives?

Alan and I have been speaking with a special life coach who has helped so many cancer patients over his career. He now also has cancer and as I shared with him my feelings of depression, I was relieved to hear him say that he too had experienced these feelings. He described a perfectly natural process by which our bodies and minds need to grieve as a result of the cancer and sadness or depression were part of that grieving process. It might not happen immediately upon diagnosis but these emotions were part of letting go of "what might have been."

I had some further insights that have literally shed more light on the situation. Darkness often either precedes or follows light. For those of you who know the story of Joseph Smith Jnr, the boy prophet and founder of the Church of Jesus Christ of Latter-day Saints, he went to the woods to pray and ask which church he should join. As he knelt to pray, he describes being enveloped by a thick darkness so much so that he felt threatened with destruction. He further describes being almost ready to sink into despair before the light came in which he saw Heavenly Father and Jesus Christ. I have felt for years that this was more than just opposition but that it was a preparation for what was to come.

In a similar vein, Abraham Lincoln suffered terribly from depression and yet he was able to lead the United States towards some of the greatest changes for a more equitable society. He commented,  "A tendency to melancholy.... let it be observed, is a misfortune, not a fault." Likewise, Winston Churchill also suffered from the same illness. Though plagued with intense personal, emotional pain, he was able to lead his country to victory against an oppressive foe. I have had the feeling that these leader's respective personal trials actually helped them to become the leaders they were.

While I am hopeful that this darker phase will pass soon, I am no longer running from it. Memories come to my mind as I recall that it has been in my darkest moments in my life that I have learned the most, that I have been personally stretched the most. There is a difference for me between wallowing in the negative which is not a good approach and asking myself, "What do I need to learn from this?" Feeling down also makes me appreciate my happy moments which are in direct contrast to my current mood. 

I  am not some great leader but in my own little world, I know that after the dark will come the light.  

 

Cancer, getting out of one track thinking: Part I

 I had a bit of a break through this week and it has added to the way I have been thinking lately. I have probably repeated this often but when I was first diagnosed with cancer I was in a state of shock. In the early stages, while I was trying to adjust to all that this meant, I literally handed my life over into the hands of the doctors. Go here, take this medicine, lie down in this machine, give me your blood, measure your urine. Fortunately for me they were experts who I have come to trust in my care. However, over time, I have come to realize that this approach has taken a toll on other aspects of my life. In recent weeks I have had opportunities to reflect on concepts that have brought me new life, and have opened up my mind.

Although brewing for some weeks now, my crystallizing "aha" moment came on Monday this past week in our monthly catch up visit with our Physicians' Assistant, (PA), Jan at the Huntsman hospital. We talked about how I was reacting to the maintenance treatments I am taking. One particular drug has been giving me some very not-fun side effects. As we discussed it, she asked if I would like to reduce the dosage. My initial reaction was for her to decide as the expert but then it hit me, this was MY treatment and MY life and I had the ability to choose. I chose to reduce the dosage but more importantly, I am finally beginning to see myself as an equal partner in this whole healing process. I have options and decisions that I can make for myself. 

This fitted in well with my recent thinking (I get to do a lot of that in my days of isolation) about choice and options. 33 years ago I started a career as a therapist. Although I have changed what I do now, I still keep my hand in there by taking some therapy clients. As I have worked with married couples having strife in their relationships, I could see that one of the most common problems faced was a question of control. Each spouse would take a position on a subject, digging themselves into their trench and would take pot shots at the other in the hope of changing the other's way of thinking. 

I read this incredible book that helped me in working with these couples called, "Getting to Yes", the iconic book by Fisher and Ury designed to teach business negotiation skills that gave me a method to work with these couples. While all of it is profound, the concept that truly changed my life and the lives of many of these couples was the ability to generate options, lots of options when trying to find a solution to a particular problem. The rules were that initially nothing was off the table, no matter how crazy or wild the option. Boy, did I hear some weird options in those sessions. However, I noticed that in the very act of generating options, couples no longer felt trapped and they did not have to fight over their particular solution because there were different ways of thinking about their situation and if one option didn't work there were other possible directions available. On the other hand, those with very limited options seemed to experience the greatest amount of stress. 

What I have come to realize is that I have bought in too much to a society that tries to limit how and what we think. We do it to ourselves. Have you noticed that social media (and the media in general) tends to be binary in its thinking? I am witnessing what I call a "binary" society happening around me and I have noticed that I am not generating solutions as much as I used to. On social media (and regular media for that matter) I am bombarded with constant arguments as people take to different sides of a political or moral discussion. Arguing is about persuasion. It is not about generating solutions. It is scary to me to witness people being shamed for thinking differently. For me, shaming is never Okay, even when I disagree with the other person's viewpoint. When we try to suppress various viewpoints then we are in danger of limiting our thinking capacity. I am not sure if we understand that often in comparing all the various options, including the craziest ways of thinking, that we are better able to crystallize what are reasonable and rational thoughts. When we get caught in an echo chamber of thinking then I believe we are losing our ability to develop new answers. 

Forgive me for being a little philosophical here and I hope that I don't lose you. It goes with the territory of having cancer. Let me explain a little more about my thinking and why it is keeping me awake at nights.  I wish I could find the article I read at the time but I remember hearing about an interesting phenomenon after the Berlin Wall came down. After the initial euphoria of reuniting Germany and the freedoms that came, there arose a particular problem. For decades under Soviet Communist rule, East Berliners had their options limited. As an example, if they needed a new coat, the government allowed one or two options to choose from. When the reunification happened, the East Berliners had difficulty with the huge array of clothing from which to choose. Their minds had been conditioned to accept the limited choices and they became bewildered by the many stores. This stunted not just their shopping ability but their ability to creatively manage their lives. They had placed their lives so much in the hands of their government.

Just like the couples I worked with who saw their options as limited and the East Berliners who were given limited options, I believe that we are currently limiting our lives and our ability to be creative and nearly all of our media is driving us in this limited direction. As I look to a lifetime ahead with cancer, I don't want to be limited in how I think. I don't want to be defined by this disease. I am ready to step into creativity in my own life and to add to the creativity of my wider community.