Treatment Twenty Three
Written by Dawn.
Today was my SECOND LAST chemo treatment! It went well and the clinic was so quiet again that we were on our way home by my appointment time!
I had a good chat with my nurses - they were not aware of Amyloidosis, and I love to educate wherever I can! I don't think that this "rare" disease is as rare as stats show. It's just that many aren't diagnosed on time, and they pass away before that can happen. Many are going from specialist to specialist and are treated for their symptoms, but no one knows the root cause.
Amyloidosis is fatal within 6-9 months if left untreated.
It's serious. And in this, we can see God's hand of protection over me back in 2021. I initially thought I had colon cancer as bowel issues began in late 2020 and I just didn't feel well. Other issues were mainly gastro, I was out of breath and couldn't exercise as was my routine, and I felt very full all the time. I was referred to my gastroenterologist in March 2020. He knew it wasn't colon cancer, as I'd had regular colonoscopies due to family history, and my last one was in 2018. There were no issues then, and he said it takes 8 years for colon cancer to develop. He knew enough from my blood work that there was "something" -- so he got me to a hematologist quickly.
Then I had a TIA stroke at home in June. That’s when the testing ramped up but the TIA stroke was ruled as a one-off because I didn’t have any precursors that pointed to a cause (ie. didn’t smoke or have high cholesterol). In late June, a bone marrow biopsy was done to check for Myeloma and there was talk of it possibly being Smoldering Myeloma, but thankfully my specialist, Dr.A, is an Amyloidosis specialist, and he scheduled a lip biopsy to be done in July. Another option was to have a heart biopsy done, but thankfully they were able to get accurate results from the less invasive lip biopsy.
The lip biopsy confirmed systemic (throughout my body) AL Amyloidosis. Chemo began in August on a Friday, and then I had the "big" stroke on the following Monday.
Amyloidosis was the diagnosis that I didn't want! I'd read up on it on Google (don't! go to the Myeloma site and look under 'Amyloidosis') and it was scary.
Just a side note here - if you read up on Amyloidosis, some say it's a disease and others say it's "cancer". We were told it was cancer and didn't know this was something that is debated. When I asked Dr. A this directly, he said that experts are divided on whether it's cancer, but he believes it is. Proteins misfold and proliferate. They are sticky and they infiltrate and damage bodily organs.
My damage is primarily cardiac, but it was confirmed in my gastrointestinal tract too via 8 positive biopsies out of 22. It has also affected my "autonomic" system - nerves, affecting my blood pressure (low) and causing me to feel light-headed.
Amyloidosis is treated with chemotherapy, as you know. (In fact, the treatment for AL Amyloidosis is a tweaked version of the same chemotherapy that is used to treat Multiple Myeloma.)
Dr. A says that "if it walks like cancer, talks like cancer, is treated like cancer..."
They call it the "kissing cousin to Myeloma" and many who have Myeloma also get Amyloidosis, but not the other way around. It's unknown why.
There are 36 known types of Amyloidosis with four main types being the most common. My type is the most common.
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As you can tell, my emotions have been quite reflective as I near the end of my chemo treatments. Grateful, and nervous. I recall the "nervous" part from 2021/22. Am I going to be okay off treatment? Will my body do what it needs to do? It's easy to seek safety in treatments and begin to trust in them.
But we trust in the Lord and are thankful that He has blessed my treatments and given healing. He gives my health team the wisdom and expertise needed. He is in control! And we will continue to look to Him in this, knowing that "there are no rogue molecules" (RC Sproul) and this is the road that the Lord has called me to take. I pray that God will use my story for His glory.
I'm very aware that many don't get the opportunities for treatments as I have had. I often think of one Amyloidosis patient who passed away with no treatment, just less than 30 years ago!
If this had happened in another country, without our many health care specialists and facilities, I likely would not have survived. I know it full well! And yet my time was not up!
There is so much HOPE now for Amyloidosis patients - new treatments and many ongoing studies too! But it is still a nasty disease and one that I don't recommend!
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So what's next? Chemo treatment #24 next week. My last one. Then I continue with immunotherapy monthly for 2 years or "as long as I tolerate it". This drug (Daratumumabub) was the one that I didn't qualify for in 2021/22 as it was in trials and showing promise. It is now standard treatment. It tends to keep patients with Amyloidosis "stable" for longer. Please pray for the Lord's blessing on it for me.
Thank you for coming along each week and for your encouragement and prayers. It is SO appreciated. I have felt so loved and cared for, and we covet your continued prayer.
Dearest Dawn, we certainly serve an awesome God. He sees you, He has walked with you through this trial, He has brought you to this point, His plans for your future are sure!
ReplyDeleteThank you for sharing this account. I found out things about this disease that I never knew. Your faith shines through like a bright light that is glorious to behold. To God be the glory.