Faces of Amyloidosis

Thank you so much to Mackenzie’s Mission for putting together this Faces of Amyloidosis video and for including me in it. Spreading awareness of this rare disease is crucial because it leads to earlier diagnosis which leads to saving lives. Once thought to be the disease of elderly men, a diagnosis of Amyloidosis is becoming more prevalent in younger men and women. Doctors need to recognize this and test if symptoms are present even if the patient does not fit the ‘amyloid profile’. Amyloidosis does not discriminate.

Here are….The Faces of Amyloidosis

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Journey to Conquer Cancer

This Sunday, June 17 2018 my husband and I will join the Journey to Conquer Cancer 5 km walk in support of Princess Margaret Cancer Centre.

Over the two years I have spent at Princess Margaret I have been met with nothing but kindness and compassion. The dedication and hard work of the staff has saved my life. Ground breaking research is being done here every day.

Please help support us if you can and donate here

Thank you!

Let’s Chat!

Over the past few weeks I have had people reach out to me who have either just received a diagnosis of Amyloidosis, or who are in the process of being tested. Each of these people has expressed that they hesitated to contact me. Please don’t hesitate to contact me!

My main reason for starting this blog and sharing my story was to help others like me. People who were sick and scared and searching for answers. Navigating a rare disease like Amyloidosis either for yourself or a loved one is tricky and frightening. But there are others out there who can help.

If you or a loved have Amyloidosis or think you have Amyloidosis please don’t hesitate to contact me. You can do so through the contact page on this blog.

If you are looking for more information about Amyloidosis check out the Canadian Amyloidosis Support Network, The Amyloidosis Foundation , Amyloidosis Support Groups and Mackenzie’s Mission. They are all excellent resources.

I wish you all the best in your fight!

Lori

The End Of NEOD001

I must say I was completely shocked when I heard of the end of the trial for NEO. Others I have talked to (people definitely more knowledgeable than I in the field of amyloids) had a feeling it was coming. I was convinced that this antibody was going to do wonders for the field of AL Amyloidosis. I was convinced that it was doing wonders for me! (I feel like maybe it did still help me even if they didn’t get the numbers they needed).

It was a very sad day for me when I heard the trial was ending. And I know there are many out there who feel the same way. Perhaps I put too much faith in a treatment that was in its early stages, but I do believe that hope still did me some good. Believing that NEO was saving me kept me going through very difficult times.

I definitely have some guilt for spreading this false hope though , and for that I apologize. It was never my intent. With all honesty I did not even once doubt its efficiency and never dreamed that this would end in disappointment. I wish I had chosen my words more carefully.

So what now? Well on a personal level, I have decided to wait and watch. According to my hematologist I am now considered a candidate for a stem cell transplant(we need to make sure my cardiologist is on board). When I was first diagnosed I would not have been strong enough to receive an SCT, but have improved so much through treatment that it is now a possibility for me. For right now, I feel better than I have in years and want to spend some time enjoying life! I missed out on so much with my kids over the last few years, we definitely have some fun to catch up on!

I know I will hear “what?! Why are you waiting?” And my answer is this. My kids are 3 and 9. This has been a lot for them to process. My youngest doesn’t understand. Even if I only get a short amount of time before I need to seek treatment again, I am ok with that. The older they get the easier it will be for them to process all this nonsense!

In the broader world of Amyloidosis, research goes on! There are still trials throughout the world for new treatments. And the more we talk about Amyloidosis, the more we spread the word, the more doctors will think to test. Early diagnosis is key! If we continue to fight, researchers will continue to listen. Despite the NEO set back we’re still headed in the right direction!

For anyone who would like to read more about the end of NEO. Here is Prothena’s Statement

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.

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.