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. 

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!