Tomorrow is a day for Thanksgiving. But I am grateful for so many things every day. So a day early I want to share what’s on my heart at this moment:

Thank you, Andrew, for being my best friend, partner, father to our kids, loving husband, logical manager, and financial provider for our family. I am always grateful to have you by my side. Thank you for keeping me warm too, in this crazy cold months.

Thank you to my kids for reminding me that life is precious and fun. I really enjoy playing games with you and hearing your knock-knock jokes.

Thank you to Rebecca, Stephen, Anne, Kurt, Shira, Dan, Whitney, Angie, Catherine, Dave, Erin Marie, Misty, and Guy for watching my kids in one capacity or another in the last few weeks. Knowing they are in loving hands makes it easier for me to do what I need to do.

Thank you for all of those that have sent me cards/emails/texts and gifts. I read your words and hold your gifts and know I am loved. Thank you for those that have made food for our family. On treatment weeks the meal train has been so helpful. Also, my freezer is full and organized (thank you EM and Misty) which makes the busy weeks outside of treatment even easier for me. I am grateful to have really wonderful cooks surrounding my family. Food is love.

Thank you to those that have given to our GoFundMe or sent funds to us in other ways. I am overwhelmed by your generosity. Truly, I cry every time I look at it. These gifts are a blessing that will allow us to make lots of great memories while I am still feeling good.

All of you have given us so much in the ways that you can give. I am grateful for such generous friends and family. I am so blessed by all of you. Thank you community for loving me and my family.

I also am grateful for my life. This life is good. Curious at times, but good. What would life be like without some interesting twists and turns? Keeping my head up!

At the beginning of this shitty ordeal, I had lots of imaging done. We determined that there is cancer in my bones (skull, ribs, vertebrae, and sternum), no cancer in my liver (benign spots only), that there are cysts on my ovaries (benign likely too), and there are very TINY spots in my lungs (also likely benign, but too small to know for sure or to biopsy). I was relieved in some ways because having bone-only mets is the best of a crappy situation. Those with bone-only mets usually do better in the long run.

After 4 weeks I was given another CT scan (this one being for the start of the trial). In that period of time the spots on my lungs grew — 3mm each. That much growth in just a few short weeks led my oncologist to believe that those spots on my lungs are actually metastatic lesions. Shit. Not good news. The good news in this situation is that my treatment doesn’t change. I get to still be in the trial.

 

 

When I went in last week to get the second infusion I also had blood work done, as I do two out of every three weeks. This brought some more unfortunate news. I expected my blood counts to be low as that’s one of the more common side effects to the medication I am on. Sure enough, yup, my blood counts were low. But not too low that I couldn’t have treatment. What surprised me was that my thyroid numbers were off the charts. My thyroid was in a state of hyperactivity.

Immunotherapy is amazing. Immunotherapy activates part of my immune system so that my own body can find cancer and kill it. But it can also cause my immune system to attack normally functioning organs, causing some pretty serious side effects. It was (and still is) a risk I was willing to take. My oncologist said that because I am so closely monitored, they would likely see any serious side effects before I would notice symptoms.

Well, that is what is happening with my thyroid. I thought I would have many more cycles under my belt before something like this showed up. Unfortunately, it happened after my first cycle. Immunotherapy is causing this issue. My provider is going to continue to monitor my thyroid numbers, but she predicts that I will eventually (sometime soon) have a hypoactive thyroid. When that fluctuation happens I will be referred to an endocrinologist. Thyroid issues are generally well managed with a daily medication, so I am told.

These are the kinds of things that most people with MBC get to figure out. I have to ask myself questions like: do I want to have the chance to live longer, but the tradeoff is that I might have other diseases or issues to deal with (caused by the treatment for MBC)? Well, if those issues are well managed would I trade that for the standard of care for MBC (which isn’t well managed)? What if those diseases amount to a worse quality of life than that of MBC? What if the treatment doesn’t work for MBC and I am left with serious side effects from treatment? It’s emotionally draining, and it’s hard to know what the right choice is.

But enough with the bad news! One super AMAZING thing that has happened since I was diagnosed is that the tumor on my sternum feels MUCH smaller than it did 4 weeks ago. I have more imaging on December 2, with results on December 6. This will hopefully give us a good idea of what has been happening in my body since the start of treatment. Fingers crossed it really is shrinking and isn’t hiding behind my sternum and that the spots on my lungs and bones are also shrinking.

I wouldn’t say sharing my experience comes easy. It’s hard for me to share something when I am in the thick of it. I want to be able to tell people that I am going to be okay or that I am feeling good, but many times that isn’t the truth. I am pretty successful at compartmentalizing, and in the weeks following my first infusion I was able to convince most people that I was doing quite well.

The truth is, it’s been hard physically and emotionally. In the grand scheme of things, I am doing well, but the new normal does feel pretty different than my old normal. The list of side effects for the immunotherapy drug I am on is long, and it overlaps a lot with the CDK4/6 inhibitor and the AI. The first week after my infusion my side effects were the most intense. I tolerate all the drugs pretty well, but I am not side-effect free. On a daily basis, I am dealing with fatigue, nausea, GI issues, joint pain, headaches, and hair thinning.

Fatigue has been the hardest of all of these things for me to deal with. I am still wrapping my head around doing less. It feels as if I am running at about 60-70% of my normal energy level. Each morning I wake up feeling foggy until about 10am. I am getting anywhere from 8-10hrs of sleep, and yet I still feel tired and just worn out. I used to wake up at 5:30am to workout before getting ready for work, but I haven’t been working out because I cannot get myself out of bed earlier than 6am anymore.

I love cooking for my family, but with my lack of energy, that has been difficult for me to do. Thankfully our fridge has been filled with delicious meals made for us by our friends. I am incredibly grateful for our community and their support. After a day at work, even with dinner taken care of, I am exhausted and have had to tell my kids I don’t have much energy to play. Andrew has also been generous with his work flexibility and has taken time to manage many of the household/familial tasks that I usually do.

Fatigue from treatment has also taken an emotional toll on me. Giving my energy to work and not having a lot of energy left at the end of the day for my kids is REALLY hard. I want to be more present for them, not less. Adding more work to Andrew’s to do list has also been hard for me. He already does so much for our family. It doesn’t feel like balance when I can’t do my part. Illogical? Likely, but I can’t help but feel like I am not doing my best. I want to be a good mama and a good wife. I want to be a good friend and a good librarian. I want to do it all, but that also won’t yield the best results either. At some point, my new normal will feel right again, but right now my scales feel out of balance.