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.