My life now

  I had my appointment with the Mayo surgeon today. My hope was that he would have the results from my PET scan last Thursday, and I was a little disappointed when he didn’t lead with that. He hadn’t seen it yet. After a little searching in my file, he was able to find the PET scan report. I think we were both a little nervous as he read it to me live, neither of us knowing if it was going to be good or bad. It was all good!!!! The report said I had outstanding metabolic results and that all previous areas of cancer have been resolved. He said I’m what they call a super responder. I’m usually pretty happy when someone calls me super or outstanding, but today those words mean more than anything. I think I’m in shock that cancer could come and go in and out of my life so quickly. I know cancer and I aren’t done with each other; we’ll likely be life long adversaries, but this is a huge triumph! As for surgery decisions, he recommended against rushing into aggressive surgery options fo...

 With the worst of this round of chemo behind me, I feel like I can proclaim that I’m halfway done. Three down and three to go. Thankfully, this round felt pretty uneventful. If anything I’m learning how to manage my side effects a little better and figuring out what foods still taste good. I’m also so thankful that we’ve been having a mild winter. It’s been good for the whole family. The kids have been playing outside in the snow and I’ve walked laps around our neighborhood with friends and neighbors. We even got a weekend away at a friend’s cabin to enjoy family time and a much needed change of scene. I’m trying to soak up the good moments while I’m feeling good, and I’m already dreaming of what this summer will hold. Hopefully, summer will be filled with lots of sunny warm days and the end of active treatment for me. Monday January 18th, I’ll be going in for my fourth chemo infusion. I have a few extra appointments scheduled during this round, and I’m looking forward to getting ...

 I’m getting ready for my third round of chemo tomorrow, and I already feel zapped of energy. The second round of chemo was definitely harder than my first, and I’m a little bit afraid that each round will be incrementally harder than the last. I had a couple days when my body ached so badly that I couldn’t do much more than stay in bed all day. I’ve also had persistent digestive issues almost the whole time (i.e. stomach cramps and lots of diarrhea.) Other pesky side effects are a constant runny nose (I’ve read this could be due to losing nose hairs, weird right?) and chemo mouth. Chemo mouth is a general yucky feeling/taste that you just can’t get rid of. Most foods don’t taste as good as I remember or imagine them tasting, and certain textures just feel awful in my mouth. It’s all left me feeling generally worn out.  My body and mind just aren’t used to feeling sick for so long. I keep thinking I’ll feel better tomorrow or wondering why do I feel so sick? It’s made realize ...

This post got really long; if you just want a quick update and prayer requests scroll to the bottom.   I thought I’d give you all a run down on what infusion days look like in case you are wondering. I start off by taking oral steroids the day before infusions. The purpose of the steroid is to lessen some of the side effects of chemo and give me some more energy. I continue to take those the day of and day after infusions.  I try to think of infusion days as a chemo spa day. I get to sit in a heated, massage recliner knitting and listening to or watching whatever I want. As a mom of two kids trying to do virtual kindergarten and first grade this break is kind of amazing! Due to covid, I’m not allowed to have any visitors with me, so I’ve been driving myself there and back, which hasn’t been a problem so far. I always grab a coffee and a treat for myself at Starbucks on the way in to make it even more of a fun day for myself. I also like trying to make myself look as cute ...

  As we all know, I look pretty great with no hair. See exhibit A: my senior picture from high school. Last week my hair started falling out. It was a little earlier than expected. I was thinking that I had at least until my second round of chemo, but I was getting fists full of hair when I tried to wash and style it. So, this weekend I decided that it’s time to shave it all off.  Steve and Eva got to man the clippers. We tried to have a little fun with it, so he made a mohawk before shaving it all the way off. I’m thankful that I’ve never been too attached to my hair and I’ve always been willing to try anything. I’ve had long hair, short hair, pink hair, blue hair, and no hair. It was a little bit sad this time shaving my head because it wasn’t really my choice, and I’m going to be stuck with a bald head for the better part of a year. I think that might be the longest stretch of time that I’ve ever stuck with the same haircut! My biggest concern at this point is keeping my he...

I am astounded and incredibly grateful for the care and compassion I’ve received from both Abbott and Mayo. I ended up getting two appointments with Mayo this week. Thursday, I met with the medical oncologists for an hour and a half, and Friday, I met with their radiologist for an hour. I really appreciated that they spent so much time with me and answered all my many questions.  In both appointments, the doctors felt strongly that my treatments should be continued with the intent to cure me. This is HUGE because the traditional standard of care for stage IV patients is to only treat symptoms and contain the spread of cancer. The focus for stage IV treatment is primarily on quality of life and not a cure. The doctor said “curative approach” so many times while talking about my recommended treatment that I started to cry. I’d been spending the last three weeks trying to temper my hope. I felt like I had already been blindsided once by the change in diagnosis, so I was preparing myse...

 Yay! I have an appointment scheduled with Mayo for December 3rd! I’m so thankful to get this appointment in before my next chemo infusion on December 7th. They already have all of my medical records and reports, and they are requesting my actual scans and tissue samples to review prior to my appointment. It is such a gift to have a complete and thorough review by Mayo. My diagnosis and treatment could stay completely same after this second opinion, but the peace of mind in knowing that we’ve weighed all our options and nothing has been missed is worth all the effort to get this appointment. Bonus! We don’t even have to go down to Rochester! Thanks to covid, we’ll be doing it as a virtual appointment.