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. 

Doing this together

 So it is almost time for the elections here in the USA and the social media and regular media posts are full of opinions, vitriol, dire predictions from all sides. I have my opinions on the matter and I will be placing my first vote as a US citizen this election round. I might have even used this post to share my opinions but after many sleepless nights worrying, I am brought back to a statement by a friend of Alan's (not a Latter-day Saint), "Politicians may come and go but at the end of the day, Christ is still King." I loved that. It is what drives my beliefs and my actions so no discussion on politics today.

I wanted to follow up on something from my last blog about being part of a multiple myeloma challenge during the month of September to move at least 20 minutes a day. To some of you, this may seem very small but it was a huge hurdle to me at the beginning of the challenge and I was so excited to get past it. It was a key to my returning to a virtual state of "normal" again. 

What I didn't add was that I am part of a wonderful organization that has been a big help in my journey. Yes, I have my wonderful family, my friends and church family but I needed more. When I was first diagnosed with cancer I began to google the disease because I had never heard of multiple myeloma before. As I have mentioned previously, what I saw on Google frightened the daylights out of me but I did find this organization online called the Myeloma Crowd that gave me some life saving information, literally. 

This non-profit organization gathers people with this disease from all over the world and is dedicated to providing the most up to date information, to supporting research and to generally providing moral support to sufferers of the disease. As luck would have it, it was founded by a multiple myeloma sufferer right here in Utah. The advice I read back in December of last year was that if I found a doctor who was a specialist in this cancer then I would increase my life expectancy by 38%. That figure alone led me to search for a specialist and I am so grateful to be receiving treatment at the Huntsman Cancer hospital as a result, with a whole team of people who do nothing else but treat Multiple Myeloma.

Having said that, I couldn't bare to look at any more material for a while because it felt all too overwhelming and scary, as I have also mentioned previously. I have gradually felt much calmer and more able to handle information, although a little at a time. My first return to the Myeloma Crowd was when I discovered that they have a coaching service. I found this wonderful woman who lives all the way in Michigan. She has been dealing with Multiple Myeloma for the past five years and is also a nurse so she has been so helpful to me as we have spent hours on the phone over the past six months. She has talked me through what to expect with so many of the procedures and the treatment plans but also to talk through my emotions, my fears when I didn't feel really able to speak to anyone else about it (husband excluded here). 

More recently, I have felt stronger about participating in their regular "round tables" where they bring in Multiple Myeloma experts to talk about treatments, latest research and to answer day to day questions. I have to tell you something that amused me at this point. I have always been 5'6" tall. It is written in my passport and on my driver's license. After my diagnosis they measured me at the hospital and I was barely 5'5 1/2". I kept protesting that something was clearly wrong with their measuring equipment.  I did wonder why they persisted in measuring me regularly. Then just recently, a seminar was held by the Myeloma Crowd on the effect on the bones of the disease. One of the doctors presenting told us that some patients lose as much as 2-3" in height because of the effects of the disease on the bones. I realized then that losing a half inch wasn't so bad after all. It was a new piece of information that helped put things in perspective and I actually laughed out loud on discovering this.

Having people around me who understand where I am coming from is so important to me. I don't have to minimize, I don't have to pretend that all is well on days when it clearly is not. I am able to explore in the confidence that they will still be there at the end of it all. During the challenge to move, there was a chat group that worked as a way of allowing daily connections with almost 500 people participating from all over the world: USA, Sweden, Netherlands, France, Australia were some of the countries I saw. During that month, at least 3 of the participants died of the disease and others spoke of their difficulties with side effects and treatments. It was both sobering and yet oddly uplifting. We were all in this together and we lifted each other through the hard bits. We also celebrated with others who described successfully navigating their way through a procedure or treatment. 

In the end of the day, so much is about attitude and changing perspective. I could dwell on the negative parts of being a cancer sufferer or I could choose to look at it all differently. Take a simple example. Yes, I have lost my hair temporarily but on the positive side I use way less shampoo and I don't have to carry a hair brush in my handbag. Now that winter is approaching fast in Utah, I don't look so different in my nifty little soft hats. When I am experiencing night sweats with my chemo treatment, I no longer have my soaking hair wet my pillow which, believe it or not, is pretty great news for me.  That same medication has kept me awake in the early hours of this morning but here I am writing this blog. Always something good to focus on.

On an even deeper level, in the face of death I feel more alive than ever. I wake each morning and am grateful that I have a day ahead to achieve something. I am purposeful in planning my time to make the most of it. At the same time, I am oh so much gentler on myself so that if I need a rest, if I am just plain tired, I take time out for a nap. After years of dieting to maintain a healthy weight, I have no sense of guilt when I feel like some apple crisp with ice cream for lunch. Mind you, my new challenge is keeping the weight on so that does help. I am doing great in this department I might add. 

Alan's plaster hand for my time in hospital

One of the greatest blessings of this journey is the increasing closeness and vulnerability that I feel with Alan. We are exploring depths of intimacy that cancer has enhanced. We have been through so much together over the 8 years of our marriage but this particular challenge has been particularly poignant for us. We are actually writing a book together that we have talked about for years but are now finally doing. Eternity looks like a lot of joy, fun and excitement from this perspective. Life is good!

PS if anyone is looking for a good nonprofit you would like to support financially, I highly recommend the Myeloma Crowd as they are doing some pretty amazing stuff and make a little money go a long way. www.myelomacrowd.org

I'm on a marathon; not a sprint

When I was a little girl, I was known to be a slow mover. If you can imagine those days at school when it was sports time and teams would be chosen by a selected leader, one by one. My memories were that I would always be one of the last ones selected because I was just not fast enough. I might add here that I became very creative about getting out of these selection processes such as offering my services to the teachers as a go-for person to run errands. Family members would chastize me to move more quickly until one day, I was involved in an art class. We were putting together a very delicate mural-type art piece. Each addition to the mural had to be dry before the next layer was added or else the whole thing was ruined. As it turned out, my mural was the only one in that class that was successfully finished because my slowness turned into patience and I carefully waited until I was sure it was ready. I received less criticism after this event.

I further learned about turning my supposed negative trait into a strength as a swimmer. Swimminng was something I adored doing and I had joined a swim club. I never won any races because I was just too slow but I was the one who could swim the longest. It was nothing for me to swim 80 lengths of the pool. In the morning of my childhood summers, before breakfast, I would go to the pool and swim for a mile. I repeated this after school and if I could get away with it, I would return after dinner and do it all over again. I can remember once that I knew that it was time to give up swimming for the season when I dove into the outdoor pool in my home town and broke ice. I learned way back then that I have an ability to endure, that my slowness translated into a determination to keep going, endlessly. 

Little did I know that I would constantly have need of this particular trait. Initially, when I was diagnosed with cancer, I would have done anything to be cured virtually immediately, or at the very least very quickly. When I went through the difficult procedure of the stem cell transplant, I had hoped like crazy that this would put me into remission and my life would return to normal, or at least as normal as possible. 

The week before last, I undertook the planned barrage of tests to determine if the cancer had disappeared. This week, I met with the doctor and PA to receive the results. It was a mixed bag. They happily told me that there was no cancer detected in my bone marrow and not in my urine sample. However, there was still a small amount of cancer found in my blood samples. This one fact changed my future treatment drastically. I was not in remission after all, but I was told I would need to go back onto the same chemotherapy treatment I experienced before the transplant although at reduced levels. The doctor told me in a matter of fact way that I would be on this treatment for at least another year and then they would review the medications. He added that there was no going back with this cancer: I would always "have it" even if they managed to get my cancer levels to zero because it was not a curable disease. (This is a new doctor who is not as positive as my previous one who has been transferred to Maryland to undertake research.) 

Naturally, I was very disappointed. I asked myself, "Can I do this and keep doing this the rest of my life?" For a couple of days I was not really sure of the answer, even if I had no choice in reality. It took me a little while to remind myself that yes, I could do this because it is in my nature to endure. It is in my nature to be a little slow about things, or, in a positive light, to be patient. It seems that I am still needing to expand on this skill and am being stretched to practice it. 

There is a whole world of difference between my swimming and coping with the long term affects of cancer. As I reflect on my future, I have come to understand that just hanging in there will not be enough. I am working on a whole attitude shift. Until this point I was focused on the results of the stem cell transplant and making it to this stage. Now is the time to think less on my treatment and more on my life, if that makes sense.

My attitude needs to be more one of gratitude which will carry me through to the end. So what do I have to be grateful for? At the time of diagnosis just before Christmas, I was one very, very ill woman. I could barely walk; I was in excruciating pain every night; I felt constantly ill and was unable eat much. I was hospitalized at the beginning of January for two weeks because the cancer played havoc with my kidneys. Although progress was very slow at the beginning, after the stem cell transplant, I am feeling more whole than I have done for the past year. My kidneys have bounced back and are doing their job again. 

During the month of September, I enrolled in a challenge with other Multiple Myeloma sufferers from all over the world to exercise at least 20 minutes each day. At the beginning of the month I pushed my limits to get to the 20 daily minutes. By the end of the month I had pushed myself so much further and was doing 200 minutes of exercise a day, walking more than 22,000 steps and climbing part-way up the mountains of Provo Canyon. I am able to eat almost normally again, having lost the metallic taste that plagued me previously. What is there not to be grateful for? Before I go back onto my chemotherapy regime, Alan and I are taking off for a few days into the wilds of Utah. That is a major move forward for me. 

I know that there will be more ups and downs in this journey but I'm in this for the long haul. I am clear that this is a marathon and not a sprint.

I've Got to Go Through It

 This week will be my 90 day mark since they started my "re-birthing" process or stem cell transplant at the Huntsman Cancer Institute. It is a very important landmark because this Tuesday, I will undertake a barrage of tests to determine whether the procedure was a success and whether I have gone into remission. I will be undertaking a PET scan, blood and urine tests and my third bone marrow biopsy. To say that I am nervous would be an understatement. I am downright scared because I have come to realize in recent weeks how much reason I have to live and my fear has increased simultaneously with my hopes and desires. 

There have been times in the past couple of weeks that this fear has overwhelmed me to the point that sleep has disappeared and I have lain awake for hours some nights. But then for some reason a kind of story that I used to tell my children came to my mind. I knew the message at the time when I shared it with them but the depth of it has come home to roost recently.

I wish that I could include a video in this blog because I can actually hear and see myself as I had fun with them in acting out the story. I have added italics to what I write next so that you get the idea of what I emphasized. It's called "Going on a bear hunt." It is a story from a book of the same name written by Michael Rosen and ilustrated by Helen Oxenbury. Here is some of the story which are in my version of the words:

"We're going on a bear hunt, going to catch a BIG one, I'M not scared, I'M not scared. It's a beautiful day. UH, OH! Grass, looong wavy grass. We can't go over it; we can't go under it; we can't go around it; We gotta go THROUGH it."

I would then make the actions of going through the long, wavy grass, "swish, swish, swish." The children came to know the story well and would go through the grass with me.

We would then continue on our adventure: 

"We're going on a bear hunt, going to catch a BIG one, I'M not scared, I'M not scared. It's a beautiful day. UH, OH! A deep, cold river. We can't go over it; we can't go under it; we can't go around it; We gotta go THROUGH it." This time we would act like we were going through the water. Splash, splash, splash.

There were a number of obstacles and each time I declared that I wasn't scared but that we had to go through the obstacles. At the very end, it went like this:

"We're going on a bear hunt, going to catch a BIG one, I'M not scared, I'M not scared, It's a beautiful day. UH OH! A cave, a deep dark cave. UH OH! One shiny wet nose! Two big furry ears! Two big oogly eyes! IT'S A BEAR!!!!! RUN!! The children and I would then "run" rapidly back through the obstacles: squelch, squelch, splash, splash, swish, swish etc. until finally we arrived back at home, closed the gate, closed the door and breathed a sigh of relief that we were safe.

It was so much fun enacting out this story with all the facial expressions, hand gestures and body movements to illustrate what was happening. The message may have been fun but it was also very profound. When it comes to this cancer and all that it has brought with it, I can't go over it, I can't go under it, I can't go around it, I have to go THROUGH it. I don't have any appropriate hand signals or gestures to illustrate this but I do have to walk through the fear. And what about the end of the story? 

The equivalent of my coming face to face with a bear is being told that my cancer has not been vanquished and that my prognosis is not good. If this is the case, I won't be able to run away but I will still have to go through many obstacles. Even if I go into remission, I am aware that it is not a cure as this is not a curable cancer. At the very minimum I will be put onto a maintenance regime of chemotherapy drugs for the rest of my life. It is not how I pictured my later years and the fear of all that means is real but I am clear that my choice is to go through it. 

I can only dream that I will become much stronger as a person as I tackle each obstacle, as I endure each treatment. I can look positively that as I go through one obstacle, it will give me the strength and the confidence that I can handle the next. I can learn to believe and trust in my Heavenly Father as He walks alongside me on my "bear hunt", that He knows how best to develop my strengths and overcome my weaknesses. Alan brought to my mind a special scripture that goes puts these thoughts into perspective:

Psalms 23:

    "1. The Lord is my shepherd; I shall not want

    2. He maketh me to lie down in green pastures: he leadeth me beside the still             waters.

    3. He restoreth my soul: he leadeth me in the paths of righteousness for his                 name's sake.

    4. Yea, though I walk through the valley of the shadow of death, I will fear no             evil: for thou art with me; thy rod and thy staff they comfort me.

I may fear pain, the thought of leaving my family and friends early and the fear of not completing all that I was sent here to do but I do not fear evil. I was recently reminded that I have led a charmed life, not because I did not experience hard things but because the hard things have been matched by incredible spiritual experiences. 

It is the wedding anniversary of my great, great grandparents, Willem Van Eck and Aleida Lobbers, married on this day in 1849. I am reminded that I am surrounded by my ancestors and I have felt their presence on many occasions. Tomorrow it is my wedding anniversary, a wonderful occasion to remind me that I have a wonderful husband and family and friends who uplift me so often. 

The greatest blessing that I have enjoyed is the feeling of my Savior close by me my whole adult life. He is not just someone people write about. He is real to me. I have heard Him whisper in my heart and ears on more occasions than I can say. His love has sustained me through everything and I know that as I go through this next phase, that He will remain with me to comfort and lead me. 

Jesus Christ, via LDS Media library 

PS I have engaged in a process for some time to write as many of those life experiences as I can into a book for my children and grandchildren at the very least. Do you think that others might want to read it too? 

Re-birth: lessons

Yes, it has been some time since I have written in this blog but I excuse myself because I have been going through this miraculous re-boot of my life in a slow and somewhat difficult process called a stem cell transplant. Let me explain some of my thoughts as I have been going through this experience.

I have thought about our first arrival on this earth as a newborn baby. We usually focus on the joy of the arrival of a cute bundle of joy and yet, having experienced childbirth myself as a mother of four children I can attest that the journey to that bundle of joy is not so easy. Labor is really a great word to describe the process because it is incredibly hard work as you go through the body squeezing out a 7 to 8 lb baby through what seems a tiny opening. Pain and joy go hand in hand.

Dunedin chapel

My mind then goes to my first experience of a re-birth in my life. At the age of 20, I was a student about to start my final year in university when two missionaries from the Church of Jesus Christ of Latter-day Saints knocked on my door one evening. Following an incredible spiritual experience over the next two days with the Book of Mormon, I accepted the invitation to be baptized a member and I was baptized that second night in a remarkably simple ceremony in the presence of four young missionaries. In my excitement at my experiences of those days, I phoned my parents to share my great joy with them. I was young and naive and recognized that instantly when I heard the anger and pain in my father's voice. I regretted not giving them time to get used to the idea.

For three months my parents did not speak to me until they called me to ask if I would help with a social occasion at their home. I was relieved, believing the
stand-off between us was over. I walked into their home at the appointed time to be confronted by a room full of Catholic nuns and a priest. Looking back, I

My Dunedin flat

realize that my re-birth was swift and brutal for those around me. It was the painful part of my decision as I became separated from members of my family and my friends who didn't understand my decision. As for me? I was filled with an indescribable joy and a sense of real peace that confirmed I was in the right place. So great was my love for my new faith that all I wanted to do was serve a mission. My life literally experienced a re-birth that has dominated every decision since.

My next re-birth experience has not been so quick to happen but it certainly has been pretty brutal. At the time of being diagnosed with multiple myeloma, the medical staff set before me the goal of undergoing a stem cell transplant. It was described as the best opportunity to re-set my system and go into remission.  A little more than 2 months ago, after undergoing a number of rounds of chemotherapy to get my cancer levels to almost zero,  my medical team said that I was ready for this next step. It was both exciting and terrifying.

I have learned that you can want something very badly and yet live in fear of it simultaneously. The process began with being strapped to a machine that extracted my blood, took out the stem cells and then pumped that blood right back in, all via something called a central line that had been installed in my chest.  That central line was my constant companion for almost two months. So far go good!

Almost two weeks later, on June 23rd,  (and after my third test for Covid19) I entered the Huntsman Cancer Institute to begin the actual transplant. In this time of Covid19, this hospitalization was different for me. I would not be able to have
visitors, including my sweetheart, Alan. It was a difficult farewell as Alan handed me over to a hospital transport service at the door.  I faced the rest of this journey on my own and I missed the touch of his hand very quickly.

That very same day, they settled me in my hospital room and they began to pump in a very heavy chemotherapy via an IV that was designed to wipe my immune system to zero. If I was to be reborn, I had to be brought to nothing first. In true American style they warned me before it all began about the probable side effects including vomiting, nausea, diarrhea and a debilitating fatigue. Was I scared? Oh Yes!

The following day, in came my harvested stem cells in this cryogenic container and I welcomed them all back via an IV. The idea of a re-birth or re-booting of my body was emphasized when the door to my room opened and this whole group of medical staff piled in, armed with a birthday balloon and a bag of
goodies and sang "Happy birthday" to me. I felt pretty good right at that minute.

For a few days, I was able to walk the halls of the ward and feel pretty normal and then around day six after the transplant, the fatigue and the nausea hit me like a bomb! The nurses reminded me that I had 5 responsibilities in this process: to eat, drink, pee, poo and move. I foresaw that only one of these tasks was going to go well. The other four required what felt like a super human effort.

Just when I was feeling close to my worst, a late night delivery arrived in my room. It was a parcel from Alan that contained a photo of us taken before I cut my hair super short and a plaster cast that he had made of his hand so that I would have his hand to hold, even if it was a little colder than the original. That bolstered me and made all the nurses cry.

Nothing can prepare you for the necessity of the special clean-up crew coming to your room in the middle of the night because of yet another bout of uncontrollable diarrhea. Two weeks after the transplant and I finally had a day without throwing up or the diarrhea. On that same day, they decided I was ready to be discharged.

I did not expect to feel so ill after discharge. I have now been home for two weeks and I wish that I could say that my re-birth process is now complete and I am back to leading a normal life. My fatigue is still debilitating, I still experience nausea and my bowels have taken a hammering but slowly, very slowly, I am getting stronger and feeling a little better all the time. From having to rest after taking ten steps, I can now make it around our condo ten times before resting. This rebirth is the most painful of all the births so far.

My greatest fear is that after undergoing such an overwhelming process that the stem cell transplant will not put me into remission. The odds are 60/40 in favor of going into remission but that is not 100%. In this re-birthing process the joy that comes has yet to come. But I have to remain positive and fight for this joy to come, to do my part. I will not know the results until day 90 after the transplant at the end of September. Roll on those results!

Becoming a more whole, emotional me

It is one of those nights again when sleep has come and gone fleetingly as the steroids have done their thing. I discovered this week from a zoom call with fellow sufferers of this cancer from all over the United States that our chemotherapy treatments/dosages are pretty unique to each of us and there is no point in comparing. I discovered at the same time that I am taking a rather high dose of these steroids so I don't feel so bad about being a little crazy with it.

In the world's eyes I am not young anymore. I should be preparing for retirement in a few years. My Dad had already retired by the time he got to my age but in my mind I am still young. I think I feel this way because I am still in learning mode about myself and my world around me. My learning is not just about understanding either: it is about figuring out what I need and want to change about myself to improve.

In the past few months I have come to a profound realization about myself that has me thinking about a radical remodel. I look back over the past whenever I have gone through hard things and I have tended to react in the same way. Head down, bum up and forward! Let me explain by going back a little bit.

I believe that suppressing my emotions is something I have probably done most of my life. It never felt really safe to fully express what I felt. This became even more apparent when I became a single parent many years ago with four young children to look after, their needs totally consuming my thoughts and actions. I rationalized that I didn't have time for emotions (even if sometimes they leaked out) but I had to put them aside for a while so that I could focus on the tasks before me. In that rationalization I persuaded myself that my children needed to be able to count on me to be there for them and that becoming a crumbling, emotional mess was just not going to cut it. If I was really honest with myself, this was as much me avoiding the pain that I was going through as it was for the sake of the children. It was a good excuse to hide away and just deal with the practical details in front of me.


As I deal with this cancer diagnosis I have seen myself more clearly as I can't quite use the same reasoning to justify my submerging my emotions and yet here  I am doing it again. The past few months have been about switching into practical mode: going to my appointments, asking questions about my treatments, preparing for future treatments in my head. So practical and so much in my head that I have not even begun to let my emotions enter this very much. Yes, there was the initial fear and panic about the possibility of dying soon but once I entered that treatment realm I have rationalized all over again that there is no time for emotions that will only get in the way.

Big mistake! The hilarious and simultaneously sad thing is that I come into this as a former therapist, a therapist who taught clients about connecting with their emotions; a therapist who said that there are no bad emotions, only bad ways of expressing them. Fortunately for me, I have not been so successful at burying my emotions this time around and I am leaking like a sieve. Recently, I had a pretty bad day when I was bombarded with feelings about being ill for the rest of my life, however long that might be. I suddenly felt super tired of the fight and I began to feel like I didn't want to do this anymore. It might be easy to just give up and let nature take its course. Fighting to survive and even thrive has always been my signature but here was I ready to give up.

At first I felt super guilty about my feelings and then it suddenly dawned on me. My emotions were valid, real and very normal under the circumstances. Staying permanently in those feelings may not be that healthy but hey, I was entitled to feel a range of emotions as I work through this new challenge. The feelings were frightening as I allowed myself to go there and yet I also felt very peaceful and for the first time in my life I am not afraid of dying.
I went a step further. I contacted each of my children to share with them that I was going to have days of despair and would feel like giving up and that was OK. I asked for their support in those times, especially to understand that this was perfectly normal to have days like that. My message to myself and my family is that allowing myself to feel the full range of emotions doesn't mean actually giving up the fight to live. It is acknowledging that this is hard and that I can't keep up the facade of strength all the time. 

What connecting with my emotions means is that I can more fully be myself, to accept who I am in all my glory. As I have said so many times to my previous therapy clients, when you suppress the bad emotions there is a tendency to suppress all other emotions at the same time, including sheer joy and love and self-acceptance. Hiding from my emotions has stunted many opportunities to deeply feel the positive as well as the negative. I am learning to change this but it isn't easy to let go of old habits and patterns. I feel like a young child, starting all over again. Do I even know how to let those emotions just flow? What will happen to the relationships around me as I allow myself to go there? Will I be able to handle the more painful moments? I don't have all the answers to these vital questions. I just know that I have to try so that I leave this world a more whole and real person.

Re-thinking my mission

It is the middle of the night and sleep is evading me as it has done all week. One of my chemotherapy drugs is called dexamethasone which is a powerful steroid that has me jangled every day and affects my sleep. It is probably the most difficult of the three chemotherapy drugs that are my treatment at this point.

It is a good time to write.

Many times in my life I have heard stories of how a life changing event has changed someone's priorities. I hear in my head, "No-one died saying they wish they had spent more time at work." So I ask myself this question often, "Have my priorities changed because of the cancer?"


Maybe this is beginning to change but from the beginning of the diagnosis four months ago my focus has been almost solely on the practical aspects of treatment, putting one foot in front of the other as I have gone to each of the appointments, undergone regular tests, taken my medication and have tried to physically get myself back onto my feet. My other focus has been thoughts of my children and grandchildren as I have questioned my mortality and my potentially limited time.

It has been difficult to be philosophical about life and my purpose in it with all these competing interests. Covid19 and the stay at home policy has begun to change that perspective as I have had more time to contemplate life and the universe. I have recently tried not to get swept up in the general anger that is social media these days as people range themselves around various causes related to this pandemic and post about their general disgust at politicians, at protesters, at the population in general and at life as it is currently.  The anger I see is sometimes all consuming as people post one article after the other that confirms the way they are thinking. There is no middle ground, no rational thought that says that both sides might actually be right, no discussion on finding solutions that take care of all needs.


In the midst of all this angst, what have I come to understand is really important to me? In the end, Covid19 is fleeting although its impact has been profound in the short term. What is really important to me is my faith and my connection with God. I have begun again to ask, "What does my Heavenly Father want from me? What is my purpose here and what do I need to do to fulfill that purpose?" With my cancer diagnosis it was easy to forget that the Lord has this all in hand, that my illness does not change the fact that I am His daughter, that He has always had a plan for my life and this time in my life is no different.

This reminder of what I have always known brings with it some much needed changes in my behavior and there are more to come. My days may be full of treatments and the physical demands of getting my health back but they have to make way for more scripture study, more connection with my Savior through prayer, more contemplation on my mission in this life and more connection with the people around me. I confess that I have never felt more challenged. Physical illness has a way of dampening the spirit and that very connection I need. I have to work harder at it than I have ever done before and I am not there yet. 

How will I know when I am on track again? When I am feeling the warmth of the spirit that is familiar to me and I am hearing His voice speak to me in those quiet whispers. When I am having spiritual experiences to add to those I have already enjoyed throughout my adult life. That is something worth living for and fighting for, no matter the ultimate outcome.

It's not all about cancer

Yes, it has been a while since my last blog post. It has been a rough few weeks with my health but I have learned a lot and I am feeling better so I thought it was about time to share.

My recent weeks have been full of constant nausea, bouts of diarrhea, and low grade fevers. Most of these days I have have spent either in bed or hugging my security blanket while sitting in my favorite chair, staring into space. On one of the days, the diarrhea and vomiting got so bad that we called the hospital and I was sent into acute care, given a bag of IV fluid and sent back home.


With a cancer diagnosis and my constant chemotherapy treatments I had assumed that this was all part of the journey, heading towards being made well some day into the future. It was all going to be worth it right? Imagine my surprise when I had my six weekly visit recently with Dr. Atanackovich and his PA, Jan to see the look of confusion on their faces as I described what I had be experiencing. It turns out that my latest tests tell them I have been responding well to the treatments and my cancer levels are low according. I should have been feeling much better in fact. So what was going on?

My doctors decided that I needed a full barrage of tests to find out, including a COVID19 check which fortunately turned out negative. However, the X-rays showed what they called "opacities" in one of my lungs. They started me immediately on antibiotics to treat me for pneumonia. Moral of the story, don't make assumptions about my own health. Not everything has to be cancer related.


Second lesson: As many of you may know, I have always loved food and have used it as my comfort, my joy in many instances and my struggle as I have worked to maintain a healthy weight. With the chemotherapy and cancer, all of that has changed. Almost everything now tastes horrible, like metal, and I can't remember the last time I even felt hungry. I have gone completely vegetarian as meat is something I can't handle. Many of my former favorite foods are off the list like breads and crackers, cottage cheese, yogurt, FRUIT!!! Lol I can't even bear to look at all the pictures of food constantly posted on Facebook and I look away from the huge billboards with food advertised on them as I make my way to my hospital appointments because they instantly make me feel nauseous. I have this list of around a dozen things that I can handle but nothing that really makes me want to eat. As a result I have been struggling to maintain my weight. With feeling ill these past weeks this has only gotten worse and I became lighter last week than at any other time in my adult life.

This has not had good consequences as I have woken up each day feeling weak and shaky from the lack of good food. As I spoke with the dietitian last week when she phoned all concerned about my most recent weight loss she had suggestions for food that I told her I had already tried to no success. Then she said two magic words that shook me up, "Feeding tube". If we didn't get this food thing sorted out and stop the weight loss then that would be the next step. What a change those words have made for me. Food doesn't taste any better but as I am taking a mouthful of something new I am trying, I keep repeating those words in my head: "feeding tube," "feeding tube". It works and I am adding to my list of foods that I can handle. Still vegetarian, still no breads etc but my husband made me a mean risotto and then a great cream of cauliflower soup. Life is definitely getting better and I think I might be able to avoid that feeding tube after all.

In the midst of all these difficulties lies the good news for which I need to be grateful: I am responding well to the treatment and it is kicking cancer in the butt! The doctors are very pleased with my progress and there is promise of good things ahead. Watch this space!

If only Cancer just stayed Cancer

Part of the overwhelming nature of Cancer isn't just fighting off the illness itself. There are so many side-effects. All the medications I take for a start each have their warning labels that tell me that not only might they beat back the Cancer itself but that they might be hard on my kidneys, I might experience a lack of certain vitamins and minerals, I will have the shakes and I will sweat so profusely at nights that I have to sleep between bath sheets to save my poor sheets, mattress and pillow. I take medications to fight off the effects of the other medications and so it goes on.

This week, I remembered another side-effect of both the cancer and the treatment that they had warned me was a possibility. I had been put on aspirin from the beginning of my treatment because multiple myeloma has the reputation of producing blood clots. This threat was increased by taking the fabulous chemotherapy drug, Revlimid (said completely without sarcasm as it is one of the life-saving drugs.) I have dutifully taken the aspirin every day and thought nothing more of it until this week.

As I have mentioned previously, I have been pain free and off my pain meds now for some weeks and enjoying the freedom of movement that has brought me. For a few weeks now I have been experiencing an increasing pain in my left calf. This past week, this has escalated to becoming a nuisance as I hobble around. I mentioned it to Jan our PA doctor at our regular meeting this week, expressing fear that I have developed a blood clot. An appointment for an ultrasound on my leg was dutifully made in South Jordan for yesterday.

I have been through so much that nerves were just not part of that appointment but they should have been there. At the end of the ultrasound the technician informed me that yes, I had a blood clot in my leg that needed immediate and ongoing treatment: serious blood thinners. The idea of an extra tablet to add to my growing stash was one thing but then it was revealed to me that I would have to inject myself in the stomach with the blood thinner on a daily basis for at least the next six months. I am already getting twice weekly injections of a chemotherapy drug in my stomach plus an additional twice-monthly injection to kick start my kidneys into producing red blood cells. However, these injections are administered by the nursing staff in their yellow cover-alls and double gloves. This one is going to be all me, a daunting possibility. I will keep you posted as to how I am doing with them.

Some of you may have noticed a different kind of side-effect of the cancer that is not really spoken about often. I have noticed a change in my personality that I am not entirely sure is welcome in all quarters. I have become much more blunt than ever before. I have always believed in speaking my mind but since the cancer diagnosis, this has gone up a notch. It is as if my mind and my emotions are telling me, "You have no time to pussy foot around this issue, speak your mind."

I learned about this side-effect many years ago when we discovered that my former father-in-law had cancer and was given only a month to live. He literally died a month later but in his final days, he experienced a change in his personality where he spoke his mind, clearly and forcefully, even about the smallest of things. Example? His wife had been cooking his eggs a certain way for all of their married life. After his diagnosis, he told her that this needed to change because he preferred them cooked differently. A seemingly small, insignificant detail but illustrative of his new-found truth telling.

Let me give you an example closer to home now. I have many well-meaning and loving people who have read about different alternative cures for cancer or at the least, they offer advice about getting through it. I have taken each one of the suggestions and weighed them up against the advice of my wonderful doctors. Some advice becomes useful and others not so much. Recently, the wife of a friend of Alan's asked me in the supermarket car park if I was using Doterra oils in my fight with the cancer. I told her, no. She then became insistent saying, "You should." My new-found bluntness came to play and I said emphatically in return, "No." I had reached my limit of well-meaning advice and was not ready to take one more shred of it. She took it graciously, thank goodness, but I may not have reacted quite so forcefully prior to the diagnosis.

Doterra oils suggested for anxiety

This increase in bluntness I also gather comes with increasing age so there is no getting around it. However, there is a large part of me that is enjoying the freedom of not being frightened to express myself openly. It may be tougher for those around me but given how short life seems to be, I make no apologies for speaking my truth. Yes, I may need to refine HOW I speak that truth but I leave fair warning that dressing up my statements to please others is no longer a priority for me. Life really is too short.