CyborD and Me

AD3991C9-332E-48C3-A5AE-999E739D1098When I first heard that I was going to have chemotherapy I pictured one drug, one very strong drug that was used to treat cancer. I envisioned myself bald and extremely sick with side effects. I was quick to learn that this was not the case for me. As I have come to understand it, chemotherapy is a broad term used to describe a variety of treatments and generally involves a combination of medications. (I’m certainly no doctor and a lot of the medical jargon confuses me, but I’m trying to learn as I go!)

The “cocktail” that I receive is known as CyborD. It consists of three medications, cyclophosamide(cy), Bortezomib(bor), and Dexamethasone(D). And I actually tolerate it quite well! Cyclophosamide is a drug which suppresses the immune system. It is used as a chemotherapy drug to slow or stop cell growth. Bortezomib(velcade) is a proteasome inhibitor. Proteasomes are cellular complexes that break down proteins. Sometimes, the proteins that normally kill bad cells are broken down too quickly. Velcade interrupts this process and lets the proteins get the bad guys. Dexamethasone is a steroid. It is an anti inflammatory drug, which minimizes side effects and helps the other medications to work more effectively.

THE PROCESS

My treatment is planned out in a 28 day schedule. Day 1, 8, 15, and 22. I receive chemotherapy once a week. Here’s what a chemo day looks like for me…..I take dexamethasone first thing in the morning after breakfast. I then spend a few hours in traffic to make the trip to Princess Margaret Cancer Centre. On the way I take an anti nausea pill(ondansetron) an hour before  my appointment.

Then come the big guns…..the bortezomib(velcade). This drug is administered to me as an injection in my stomach. It sounds much worse than it is; it burns a little as it goes in but it’s over quickly enough.

Then I’m back in traffic! When I get home I have a snack and take the cyclophosamide, which for me comes in the form of 5 pills. At this  point I’m normally pretty worn out and like to cuddle up with my boys and binge watch cartoons.

THE SIDE EFFECTS

The list of side effects for each of these medications is long and scary! I have been  fairly lucky that mine have been minimal. It seems to be one of those things that affects everyone differently,  but here’s what I’ve dealt with so far.

When I first started I would feel like crap for a few days after treatment. Fatigued, nauseous and generally unwell. It’s not clear though how much of this was from the medication and how much was a result of my unhappy organs which where bogged down with amyloids.

As things started to progress the side effects seemed to be less. As long as I take my pre meds my nausea is kept at bay. The steroids keep me up the night I take them, and make me grumpy and short tempered.  I usually have redness and a raised itchy rash at the injection site. Although I have not lost all my hair, I have lost some. It is thinning and has a much coarser texture.  I very randomly get a small amount of neuropathy in my feet and hands, but I have been fairly lucky with this, as it is so far very limited for me.

I found out this week,  after 76 Thursdays of receiving chemotherapy, that I will now be reduced to every other week! So happy to hear this news!

To anyone starting this treatment I wish you the best of luck! Please feel free to comment below if you have any questions, or if you would like to share your experience with CyborD.

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A New Year

As we begin a new year I will not make any resolutions, I will not have a goal setting session, and I will not create a vision board. I will not focus on improving myself; I will instead focus on accepting and loving myself. Just as I am.

In the past few years of my life I have had to accept some limitations. Although I am improving as I continue to heal, I am faced with what are going to be longterm limitations of how much I can physically accomplish. I am faced with the possibility of giving up a job that I love because I can no longer spend 8 or more hours on my feet.(floral design is a tough job…lol) It is very difficult for me to say “I cannot do that because I am not strong enough”. Yuck. But that is the truth, and a truth I need to accept. Instead of beating myself up and making myself feel bad for the things I can’t do, I will focus on the things I can do.

We put so much pressure on ourselves to have everything, to do everything, to be everything. We have these unrealistic expectations, this vision of what we think life should look like. Pushing ourselves to our limits, comparing ourselves to others, trying to make everyone happy. But all that matters is that you are doing your very best to play whatever hand you have been dealt. Just remember to do it with kindness and love, for others, but also for yourself.

Forgive the mistakes you make, accept your limitations. We are all flawed, and expecting anything else will only lead to disappointment. It ends up being a vicious cycle of pressure and guilt. Feeling bad about ourselves because we don’t measure up to some imaginary standard we have created in our mind. A standard based on unrealistic expectations and assumptions.

I will stop the negative self talk and give myself a break. Do you know what I mean? That little voice that says things like “What’s wrong with you? Why did you say that?!” Or “You should have been more patient with the kids” or “Why didn’t you try just a little bit harder?” That little voice that picks apart the day and points out all your flaws.  I’m going to let those thoughts go because I wouldn’t talk to anyone else like that, so I will give myself the same respect. I will give myself a break, forgive myself for my mistakes, and accept my limitations.

So I guess I do have a goal, or a resolution, or an intention for 2018….to accept and love myself just as I am. 

View from a chemo chair

img_3346As I sit surrounded by the sick and dying I see love. I see hope, kindness, family, and friendship. I see just how remarkable the human spirit can be. How flexible, how positive, how much we can endure while still managing a smile and a laugh. I see the power of a kind word, how the mere presence of a loved one can give us strength, how the smile of a stranger can lift our spirits. I see people at their best. Helping those around them, thankful for a tea or a warm blanket, thankful for an encouraging test result, grateful for successful treatments, grateful to be alive.
We are connected here. All with the same wish; One wish, to heal. Our priorities have shifted. We aren’t concerned with material possessions, with career advancements, with financial success. We just want to be alive. We want to experience as much as we can and spend as much time as we can with the people we love. I find it strange that sometimes it takes going without to be truly grateful. Why does it sometimes take a tragedy to open your eyes and make you see what is really important?
I am reminded of this as the holiday season approaches, reminded of how truly grateful I am just to be alive. To be here, surrounded by people that I love, just soaking it all in. As I get busy with the to do lists it becomes easy to let this grateful feeling slip, to go back to old ways and take for granted the wonder that is life.
This Christmas, amidst the hustle and bustle, the to do lists, the gift buying, the decorating, cleaning, baking and food prep, I will make time for the things that truly matter. I will take a moment to pause and take it all in. I will get out of my head and into my life. I will slow down, take a look around, be present and appreciate all that I have. Because I am so very lucky.

Always look on the bright side of life…

Have you ever felt that life is trying to see what  you’re made of? Piling on the problems and the chaos in an attempt to make you snap? So what do you do? Give up and let the issues break you and define who you are, or face them head on with the attitude of a survivor? We would prefer the latter route of course, but sometimes it just doesn’t come easily or naturally. Sometimes having a positive outlook is a battle in and of itself. I’m writing this as a reminder to myself, a reminder that positivity is a choice and should be made a priority.

During this battle with Amyloidosis many of my doctors and nurses have commented on my positive attitude, noting how the right mind set can make a difference during the course of treatment.  I will be the first to say that it has not always been easy for me to stay optimistic. I did however make it a priority. Throughout this illness there have been many things out of my control, but even when I could not control my physical state, I could control my mental state. I am a big believer in the idea that “life is 10% what happens to you and 90% how you deal with it.”

Some days it was harder than others, but it was important to me to maintain a positive outlook. I know it will not be the same for everyone, but here are some of the ways I pulled myself up when I was having those rough days. (Please keep in mind that I am in no way a professional, these are just some ideas that work for me).

Feel your feelings 

It helped me to realize that you don’t have to feel positive and upbeat all the time to still have an overall positive attitude. There will be times when you feel down, depressed, overwhelmed, scared or lonely. Feel these feelings, acknowledge them, and then move on. Write them down if that helps you release them, tell someone your fears, or set a timer and spend a few minutes with the sad thoughts. Just don’t live here! Don’t dwell on the negativity. Spend a few minutes here and then move on.

Occupy your mind!

I have a list that I keep with me of things I enjoy doing, realistic things that I could do even when I was at my sickest. Anything that puts a smile on your face can make the list, such as watching a funny movie, reading, listening to music, colouring, writing, scrapbooking pictures of my kids. When you’re stuck with these depressing thoughts and you’re not physically well, even figuring out something to do can feel overwhelming. Having these ready made ideas helped to keep my mind occupied with things I enjoyed. When my focus was elsewhere I was not just dwelling on my disease or how crappy I felt. Make it a priority to spend some time doing the things that make you happy.

Reach Out

Remember you are not alone! Whether it’s a friend, family member, doctor, therapist, or support group, you can find a friendly shoulder to lean on. Sometimes just knowing I had back up and hearing someone say “You’ve got this! Brighter days are ahead!” was enough to revive my spirit.

Don’t confuse your path with your destination

It’s difficult when your in the midst of horrible times to see the light at the end of the tunnel. Remember that your life is ever changing, and that things are not permanent. Some days will be better than others, and one thing you can count on is that they will at the very least, be different. Try your best to take things one day at a time, because you don’t have to , nor is it possible,  to have the future figured out. Make the best out of your situation, however crappy it is, and have faith that brighter days are ahead.

Seek out positivity

I have another list(and maybe a few pinterest boards) of positive quotes. Inspirational sayings that speak to me and help me lift my spirits. Because sometimes all we need is a little reminder to refocus those thoughts onto more positive things. “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” (Yes, I am a Harry Potter geek).

Sometimes staying positive is a lot harder than it sounds, but the more you practice it the easier it gets, and the more natural it will become for you. Focus on the things you can control, find the joy around you, and remember YOU HAVE GOT THIS. “You are braver than you believe, stronger than you seem, loved more than you know, and twice as beautiful as you’ve ever imagined.”

Please feel free to share in the comments section below any ideas that have helped you to get through the rough patches.

 

My story of AL Amyloidosis

I have AL amyloidosis with multiple organ involvement. Plasma cells in my bone marrow over produce light chain proteins which misfold to form amyloid light chains. These misfolded proteins have built up in my heart, liver, and kidneys, causing them to slowly fail. AL Amyloidosis is a rare and life threatening blood disorder for which there is no cure.

There are treatment options available, and promising new drugs are being researched. I’m part of one of these studies and I’m happy to say that I’m kicking some Amyloid ass! I am one of only 260 people worldwide receiving this treatment; a treatment which I believe has given me my life back. I want my story to bring some much needed awareness to this horrible disease, and also to bring hope to those who are newly diagnosed.

My symptoms presented themselves slowly over time and in strange ways. I’m not even really sure when it all started. It’s a slow progressing disease and it can take years before symptoms show. I would say I began noticing symptoms in 2014 with tingling in my hands, changes in my migraines (they became more frequent and I started getting auras), and a general feeling of fatigue and being unwell. I had recurrent UTI’s and a two week long bout of what they thought was stomach flu.

I went to see my doctor but my blood work came back normal. The only thing they found was during an ultrasound, when they noted that my liver was enlarged. After more bloodwork for liver related problems they found the results came back normal. I made some lifestyle changes and went on a new medication for my migraines. My doctor tried to convince me that my symptoms were caused by anxiety, and that I should try going on anti-depressants. I felt like I was going crazy; that no one believed that I was sick – but I just knew that something was wrong.

During the two years between these strange symptoms presenting themselves and my diagnosis, I was sick on and off. I felt fatigued and generally unwell, but thought maybe I was just tired from a busy life. I had a young son and was trying for another baby. The latter proved to be very difficult and my doctor couldn’t figure out why at the time. I had four miscarriages before I finally managed to get pregnant and give birth to healthy baby boy!!

My pregnancy was pretty uneventful. The only thing that showed up during my pregnancy was protein in my urine, and because there was no sign of infection they chalked it up to being “just one of those things your body does when your pregnant”. I know now that it was a sign of my kidneys beginning to fail.

When my son was about 8 months old, I began to feel sick again. More migraines, more fatigue, a constant feeling of being unwell. I also started to have swelling in my legs and feet. I went to the doctor again. I continued to go back; again and again, pressing for answers. They were convinced however, that there wasn’t anything seriously wrong with me. I was not.

I’m certain I may have seemed a bit crazy at this point. I felt out of control, scared and confused. I knew something was seriously wrong but was getting no answers. I went to my doctor with a giant list of symptoms and I asked for more bloodwork to be done. Finally things came back with extremely abnormal results. At this point I was sent to a Hematologist. There was no more denying that there wasn’t something seriously wrong. I was extremely sick. I was retaining so much fluid in my abdomen that I looked about 7 months pregnant. My legs and feet were so swollen that I couldn’t walk far without extreme discomfort. Because of the accumulation of fluid around my heart placing additional pressure on my lungs, I had to sleep sitting up to breathe properly.

I was finally admitted to the hospital, and a great team of specialists(including the hematologist) took over my care. They were still unsure as to what was going on, and I had to undergo multiple tests. X-rays, MRIs, ultrasounds, a kidney biopsy, a bone marrow biopsy, and… ridiculous amounts of blood work! The waiting and not knowing was so scary during this time. As these specialists ruled one thing after another out, a scarier, more serious diagnosis seemed to be looming in my future.

I remember the first time I heard one of the doctors say amyloidosis and I thought –“ what is that?” They said “it’s probably not this, we just need to rule it out”. But that was it. There I was; finally with a diagnosis. On the one hand relieved that we’d figured it out and could move forward with treatment, but on the other hand, what a frightening diagnosis this was!

I googled it…what a mistake! Very few stories had a happy ending. Many people did not live past a year after being diagnosed. It seemed I needed to make peace with this possibility. This meant that I had to face death and consider very seriously that this was the start of the end. I wrote letters to my husband, parents and children saying goodbye. I made scrapbooks for my boys so that they would have something tangible, just from me. I recorded myself singing their favourite lullabies. I was prepared to fight, but needed to have these things in place just in case I didn’t win. (I like to plan and may be a bit of a control freak)

Now it seems like the universe was on my side for this one. My hematologist told me about a worldwide clinical trial taking place at Princess Margaret. She STRONGLY recommended I try it as it was what she considered to be my best line of treatment with the greatest possibility of success. The timing was perfectly inline with my diagnosis. It was actually a very difficult decision to make, as it not only meant being a guinea pig for a mystery drug, but also more testing and waiting to begin chemo in order to see if I would even be accepted into the study group. Part of the criteria was that my heart had to be involved. This meant a worsening of the prognosis but would mean I was eligible to participate. Seems that my heart was also involved and that the walls of my heart were thickening due to amyloid deposits. This increased the threat of the disease, but also made me eligible for the clinical trial. The whole time I waited for the results I felt myself getting sicker and sicker. I went back and forth and finally decided to do the study. I am so thankful that I did!

It’s been a very long road with many complications along the way. Not long after starting the treatment, I was admitted to the hospital with low sodium. They discovered this at one of my routine, pre-treatment, blood work analysis visits. I ended up having to stay a few days until everything regulated. It was during this hospital stay that I learned the treatment and the clinical trial were working! My free light chains had dropped dramatically.

I continued on with treatments and a positive outlook. A few months later I started feeling ill with stomach cramps. It was extremely painful and I couldn’t eat, so I went back to the hospital again. I was admitted to ICU with a partial bowel obstruction, as they debated whether or not I needed surgery to clear the blockage. They did not want to operate on me because I was too high risk. There was talk of sending me to Toronto to a specialist there. For some reason my vitals started to stabilize a bit and they decided to keep me where I was and take a “watch and see approach”. I was in the hospital for two weeks. I was on morphine for the pain, and they stuck a tube down my throat which attached to a vacuum, in an attempt to vacuum out the gas which was blocked and causing my stomach to be so dissented and cramped. I was diagnosed with a partial bowel obstruction and “Ogilvie Syndrome”, meaning that my bowels for some reason were “stunned” and not functioning at all.

The head surgeon had a strange idea that he thought might help. They put me on a table that elevated and tipped, and two people held me down. He proceeded to push on my abdomen starting at the top and followed the path that my intestines took in an attempt to push the blockage through. It seemed to have done the trick! During this visit I didn’t physically eat anything for 5 days and was hooked up to an IV which gave me all my necessary nutrients. This was followed by a fluid diet until I gradually built up my strength and ability to digest again.

Back home and back to treatment. Things were moving along nicely and my levels were slowly starting to improve. Then, a few months later, an Umbilical Hernia I had developed while I was pregnant with my second child became “incarcerated” and it looked like I needed emergency surgery to have this repaired. Off to emerg again. They sedated me and the ER doctor attempted to push it back in. My husband was in the room with me and said I was passed out but still trying to punch and kick the doctor because he was causing me so much pain. (I’m a planner, control freak, and a bit feisty…lol). I was still considered “high risk” but it looked like they had no choice. I needed the surgery and I needed it quickly to save my life. They didn’t know what I would wake up to, thinking they may have to take part of my bowel while they were in there; warning me I may wake up with a colostomy bag. Thankfully the universe was on my side again and I had a great surgeon. I came out of the surgery with flying colors and no complications!

They stopped my chemo treatment for a few weeks to give me time to recover. It was after this surgery that things really started to improve for me. Because of my fluid retention I had been getting biweekly paracentesis done. This is a procedure where they drain the fluid out of your abdomen. Most times I would lose 11 pounds. October 2016 was my last one and I haven’t had to have this done since.

I’m slowly gaining back my strength and energy. My levels and key markers all continue to improve. My heart has shown a decrease in thickness, my BNP (a marker of heart failure) has dropped to a normal level, my liver continues to shrink and there is less protein in my urine. The trial drug seems to be doing its job!

There’s still been damage done from the amyloid build up; my liver and spleen are still enlarged, my kidney function is still impaired , and my heart still shows signs of amyloid deposits; but it’s reversing! I’m slowly but surely shedding these deposits. I am so thankful for this research! I have no idea what my future holds, but right now I am so grateful to be here, and to be healing.