The Road Set Before Me

  Written by Dawn and Alyssa. This has been a busy start to the week for Mom, with labs and an appointment with Dr. A on Monday, followed by Immunotherapy treatment on Tuesday.  Monday’s appointment with Dr. A was fairly uneventful. He was happy with her lab results so far and with how active Mom has been. She’s been meeting her 6,000/day step goals, which is impressive for her! She always tries to hit that goal, but she wants you to know that some days she doesn’t make it, or she struggles to do so. Tuesday ended up being a busier day than expected. Before leaving for treatment, Mom received a call from Dr. A. He had forgotten to mention at Monday’s appointment that he would like to set Mom up for a stem cell collection to store the cells until she needs them. This is something that has been casually talked about happening “at some point” but that's about as far as that planning has ever gone. This was initially abandoned in 2021 due to mom’s heart damage, but it has been tal...

Written by Dawn. My treatment today went well, and we were even taken on time again. Andrew was able to go with me today, which was nice. My nurse was great, but it was more painful this time; it wasn’t the worst either.  I do find treatments more difficult when they’re not weekly.  Being out of the routine makes for more apprehension when it's time for treatment again.  I felt discouraged today, so I had to get more into the Word, prayer, and music. It is such a comfort to trust in God throughout this journey. It will be interesting to see how my body reacts this time to the only-Dara treatment.  Had my first only-Dara last month, but I had a bad cold at the same time, so it was difficult to tell. Side effects are said to be EXHAUSTION.  I hear it from patients in our support group and from reading online.  Officially, the side effects of Daratumumab are “exhaustion, diarrhea and vomiting.” Somehow, “exhaustion” sounds like the best 😉.   This pa...

  Written by Alyssa. Writing this feels like the equivalent of me saying, “But wait..there’s more!”  Yes, Mom HAS finished her chemotherapy treatments, but she will continue to have monthly Immunotherapy treatments for the next two years(24ish total monthly treatments). Today Mom and I were discussing how two years seems like such a long time, but when we put it in the perspective of treatment numbers, then saying twenty-four treatments makes it sound a little more manageable.  Mom has been fighting a bad cold over the past week, and at her appointment with Dr. A last week, he noticed right away that she seemed a bit out of breath. He ended up sending her for an X-ray, and there was no pneumonia! Praise God for giving Mom the strength needed to fight off her illness! This week was Mom’s first time receiving only immunotherapy. She’s had only chemotherapy before and had both chemotherapy and immunotherapy before, but she’s never received JUST the immunotherapy treatment on...

Written by Alyssa. Today is THE DAY! Mom had her last chemotherapy treatment this morning!  I was able to go into the appointment with her and dad, which was a pretty cool experience after hearing about it for so long. The appointment itself was uneventful. Mom was pretty excited to have one of her favourite nurses give her her last shot.  Since this was Mom’s last chemo, she was able to ring the bell! Suzanne, Angela and 11 of the grandkids had come along and met us at the bell after Mom’s appointment to celebrate. What a great moment! Mom says she finds this part awkward to ring the bell while everyone looks on, and the nurses sing at her to “hit the road Dawn (Jack).” But we know that this isn’t just for her. Yes, the bell is a symbol of completion and celebration, but it’s also a symbol of hope to those patients still in the waiting room awaiting their treatments.  And ring it she did! Didn’t even struggle to ring it. I remember when she rang it after completing her 2...

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 Marc...

Written by Alyssa. The countdown begins. Today was Mom’s LAST time getting both Immunotherapy and Chemotherapy together! She will have two more treatments of just chemotherapy and then she’ll be done with chemo! WOOOHOO! 🥳👏  After this, she will continue to go for Immunotherapy treatments once a month for two years.  Treatment went well again today. They were running behind at the chemo clinic, so Mom had to wait about an hour past her appointment time before she got her treatment. The nurse today was very kind, but the immunotherapy shot was pretty painful. Mom and Dad noticed the nurse who gave her her shot was wearing a cross on her shirt and it turned out that she was a Christian! Mom had a lovely time chatting with her while she was getting her treatment.  Mom was very tired after coming home from treatment today and was ready for a nap as soon as she got home!  Prayer Requests: Praise God for all He has done in bringing Mom through her treatments. Pray for pe...

Written by Alyssa. Mom had this week off from her chemotherapy treatment and instead had to go in for a prescheduled echocardiogram on Tuesday. These tests always give mom a bit of anxiety, but she said she just prayed throughout the whole thing. She prayed for healing but also for God’s will to be done, and she felt a peace throughout the test.  Mom's wristbands from each of her   21 treatments so far. Mom will meet with her cardiologist next Thursday to go over the results, but so far they have shown that her heart function has gone down a little bit. Mom is always a fan of the numbers and has always been very competitive with herself about her lab result numbers, always wanting to do better.  She's now 0.2% below the point at which her heart is in the “normal” range. This was disappointing for her, but we will wait to hear what the cardiologist has to say about it.  Today Mom went for her labs and then had her appointment with Dr. A, who is her hematologist/o...

Written by Dawn and Alyssa. Hello everyone! It's Dawn here. I was sharing with Alyssa various things about this past weekend and she suggested I write about them and she'd edit my thoughts for today’s post!  I had a bit of a break last week with no treatment and it was really good. I had some anxiety earlier in the week when I was having some side effects from the previous treatment and it seemed to me like I would never feel well enough to go away for the weekend as we had planned. Thankfully, the side effects lessened in time for us to leave on Friday.  We were planning to attend my niece Olivia's wedding, and I was nervous about being away from my comfort zone (Toronto area, so not too far away), but being away turned out to be a blessing. Not just the wedding (more on that later), but just being elsewhere with no appointments or treatments or recovery and to fill my mind with what was around me instead! We went there earlier and stayed at a hotel in Bradford, 20 minutes...