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.

A lesson in contradiction

There is something about facing death that becomes an everyday part of life, almost humdrum. At first it's jarring and frightening, the kind of reaction that sends you off at a running pace to write a will or to think about the legacy you are leaving your children. These were certainly my initial reactions when I found out that I had the big "C".

My first 10,000 step day since October 2019

But then the weekly treatments take over and all thoughts turn to survival rather than death. Sure, there is still that thought in the back of my mind, "I might not make it through this particular trial" but most of the energy turns into the fight to stay alive. It is the will to live that becomes the driving force in my life, not thoughts of death. It is a question that has plagued me since I first learned of my diagnosis: How do I balance being optimistic and having a will to live as opposed to making myself ready in case I don't make it?

Everywhere I turn, I am told that attitude is more than half the battle. The chemicals do their work and are vital to survival but so too is that belief in myself that I am not going anywhere, that I CAN beat this. It is what drives me to keep going twice a week to be injected with chemotherapy drugs. It is that same force that has me swallow a pharmacy full of pills morning and night, a process that was totally foreign to me before this all began. It is what makes me feel positive about having my blood drawn every week to check on my general well-being, particularly the health of my kidneys that are currently doing overtime to filter out the dead cancer cells that are being created. If I didn't believe that I could survive then there would be little use in putting myself through a treatment that has some pretty serious side effects.

My daily pill collection

A little more than two weeks ago, I finally got to sit down with my "cancer doctor", Dr. Atanackovic to check on my overall progress, to see if I am on track according to the best case scenario. The goal is to go into remission and he made it clear that this means the cancer levels have to be at zero or very close to. He appeared to be happy with my progress so far. I went from having an "M"-spike of 80% down to 37% in the most recent blood tests. It was a good sign that I have been responding to the chemo treatments.

They are clearly preparing me for the next stage in the treatment as the social worker, Nico, came to speak with Alan and I about the proposed stem cell transplant. The conversation was both hopeful and daunting at the same time (there goes that contrast again!). It was news to us that it will take 3 long, long days (7am-9pm) to harvest my stem cells. Once harvested, I will undergo a massive dose of chemotherapy that will completely wipe out my immune system, kind of like having a clean slate. This will last one day and then they will put my stem cells back into my body to give me a healthy kick start again, without cancer cells this time.

It was news too to learn that I will not be allowed further than 20 miles from the hospital for the first 30 days after the stem cell transplant and I will need someone with me for 24/7. While this needs more clarification, I am grateful there is this home called Hope Lodge where we can stay for those 30 days. Nico went on to describe that by day 10 I will be at my lowest, I will lose all my hair and I will feel as if the bottom of my world fell out beneath me. The one common element for all patients is a total sense of indescribable fatigue, so much so that I will not be able to eat. I will learn to suck on ice to keep me going.

So attitude is going to be huge in this next phase. It will all be worth it if I can go into remission and be largely cancer free, at least for a time.

Living in Denial

How is it possible to have something so much in your face and yet still be in denial? Even the very act of writing this blog should signal that I have accepted my cancer diagnosis, that I am dealing with my reality. I wish that was true but denial is still very much alive.

The fire hose has turned into a garden hose and I am still getting wet but at a slower pace. Once I was discharged from the hospital after 11 days, a kind of routine settled in. I count the beginning of my week now from each Tuesday when I return to the hospital for my "infusion." I start that day by taking 10 tiny steroid tablets and then within a few hours I am off to the hospital where they give me an identifying wrist band, take vials of blood from me, weigh me and take my vital signs, just as I did as an inpatient. I rattle off my name and date of birth on each occasion and they take scans of my wrist band, making sure it is indeed me, Marianne Downing, who is receiving the treatment.

In the infusion room, they send for my injection of a drug called Velcade which has to be injected into my stomach. Two nurses are required to determine that they have the right drug for the right person and then one of them dons a yellow protective suit and two pairs of gloves before once again scanning my name band and then injecting me. I'm free to go home after this, only to don protective gloves myself to administer 11 tablets of another chemotherapy drug in the evening.


Usually exhausted by now, Tuesday evenings consist of making my bed with huge bath sheets because of the night sweats that surely will come as a result of the steroids. A change of clothing and a few more hours of sleep before daybreak finally arrives. I feel fortunate if I have slept for four hours on these nights.

Slowly, as the week progresses and I flush out the chemotherapy drugs from my system, my life becomes more "normal". Well, almost. My appetite has gone wacky and everything tastes of metal except for a very small variety of food that is better suited to babies than to a grown woman: mashed potatoes; mashed squash, porridge or oatmeal as the Americans call it. Not exactly exciting fare but I am doing my best to maintain my weight. They tell me I am going to need all my reserves for future treatments that are yet to come.

Cancer treatment has therefore permeated every aspect of my life, taking it over and I feel swallowed whole. And yet, I am clearly in denial. As a former therapist I can recognize the tell tale signs that I am hiding my head in the sand. When I was first told about "multiple myeloma" I avidly googled like crazy to see what they were talking about. What I read was frightening and overwhelming. There was this redeeming information about needing to find an expert in this particular cancer which led me thankfully to the Huntsman so for that I am grateful. However, that little bit of knowledge sent my head and emotions into a tailspin. After one full day of looking it all up, I stopped searching, unable to look at another word.

At the Huntsman hospital you are constantly surrounded with the reality of cancer. There are the little baskets everywhere of knitted hats which are free to all cancer patients, a reminder that the hair is not long for this world. There are the other patients of all ages in various stages of their battle in the corridors and meeting areas, many with bald heads, masks and holding on to poles containing IV fluids. There are the stands of masks and hand sanitizing liquid on every floor to remind people that this is a fragile population. Here am I in the midst of all of this, an actual cancer patient.


I have to pinch myself and try to face up to the idea that I have cancer. I remember that this has always been my nightmare, to have a long-term disease that would gradually take my life. But I am not there. I live in a fantasy world in my head where Cancer is something out there among the masks. It's not real. To make sure that it doesn't apply to me, I make sure that I don't read the magazines that are cancer focused. I put a shield up so I can't see the doors of the cancer library on the sixth floor of the building and hardest of all, I avoid well-meaning friends who want to visit to commiserate and who greet me in hushed tones that speak of their sympathy for my plight. I can't bring myself to speak to them because cancer is out there, not something so close as in my own body. I am in denial.

As time is wearing on, my natural curiosity is slowly beginning to return to me. Still, I only want to talk to medical staff, experts who deal with this stuff day to day. I can write this blog and I can pick me up one of the knitted hats in all good conscience because I am going to need it. The fog of disbelief is finally lifting and I am thirsty for knowledge about what to expect. signs and symptoms, treatment options. I have begun to take greater comfort from speaking with other cancer patients because after all, I belong to the club now. "But don't push this" I tell myself. if you come and visit me or call me, I am still going to avoid you for the moment. Denial is having trouble giving up its grip on me and I am holding on for dear life for as long as I can.