Hello dear warriors,

It’s been a while, so let’s dive right in and get everyone caught up to date! When we last left off I had just returned home from MD Anderson in October with few definitive answers in hand. I did have a plan though….

Coming home from MD Anderson in October I was exhausted. I was struggling to think straight and barely holding on. I was fueled by the promise of an upcoming cancer camp with Project Koru to Costa Rica. I’d tell myself over and over, “Just make it to Costa Rica, just make it to Costa Rica.” Over and over, I’d tell myself that for the two weeks between returning from MD Anderson and the trip occurring. 

The two weeks flew by and Costa Rica soon came. In Costa Rica, my life was changed—for the better. (That is a blog post I’m still working on. Turns out it’s extremely difficult to describe a truly life changing experience.) In a quick elevator pitch… I learned how to surf. I started a daily yoga and journaling practice. I made new friends who have become my biggest supporters, encouraging me to advocate for myself. I learned to slow down and live the Pura Vida lifestyle, focusing on what’s most important to me and filtering out the rest. In short, I re-found myself and my power. 

After that full week of changing mindsets and Costa Rican bliss, I returned to Omaha to a school crippled by sadness. A student had died by suicide while I was gone. This meant Oliver and I were in high demand (Oliver more than me) to help our grieving students in any way we could. It was a real juxtapose of my pure bliss and the school’s sadness existing at the same time. It added another layer of complexity to my already-jumbled brain, one that I still needed to figure out how to fix. 

The Speech Therapy Path 

What I needed to figure out was how to execute the plan I had come up with while at MD Anderson that Neurology signed off on. See, having worked with patients at QLI with traumatic brain injuries, I knew that therapy existed to help one form new neural pathways and coping skills to manage this side effect in everyday life. I thought this type of therapy could help my chemo/covid brain. When I had asked my neurologist for a neurocognitive rehab script, they  gave me the script and said, “You should be able to do this in Nebraska.” With no further instructions of where or who to ask. 

I returned home feeling victorious that I was right, but unsure who to take the script to. Because I was so exhausted and knew figuring out where to go would take some major work on my part, so I waited until I returned from Costa Rica to dive into the process of figuring this out.  I started by reaching out to some concussion therapists who I worked with through my current job as a high school nurse. Alas, they said I was far beyond what they could help with and they too didn’t know where I should go. Then, while at a scheduled lymphedema therapy session, I was telling my lymphedema therapist Wendy about all the happenings (including the script) I was very proud of getting but didn’t know what to do with. Luckily for me, she knew right away who I should take the script to—speech therapy. 

It felt like a weird place to land. In my jumbled mind my issue was memory and fatigue, not my speech. Sure I had times I couldn’t find the right word, but this was not a speech issue. Boy, was I soon to be schooled! It’s truly amazing to me that even working in medicine I often have no idea what other professions or specialities actually do. I think a bigger emphasis needs to be put on having everyone learn what everyone else does, and more therapies need to be offered to all patients, but I digress. 

Mitch and I headed into the appointment unsure what to expect. I figured: a 30-minute appointment, maybe some mild testing, learn a few exercises, go on my way. What actually occurred was pure magic. We met Jamie, a speech pathologist, who was eager to help me. She administered over an hour of testing. The testing was more than drawing clocks and reciting words like it had been at the quick neuro appointment in Texas. 

Jamie wanted a full picture of how my brain is doing. This included multiple types of tests, including remembering words and faces later in the appointment, doing tasks involving multi-tasking while being interrupted, and much more I’m sure I don’t remember. I do remember that for the first time in a long time I could feel my brain being stimulated in a good, healthy way. It was exhausting and exhilarating. 

After all the testing was done, Jamie went over the results with us. No surprise to me, the testing showed that I had issues with memory and processing speed. I finally had the clear definitive data to prove what I knew to be true, but struggled to articulate. It felt like I cracked a secret code. It was validating and scary. 

Since that first appointment, I’ve spent many a Friday afternoon in Jamie’s office, learning strategies to help me find words, playing games that help my brain form new neural pathways, and being reassured that I’m still quite safe to practice nursing. There’s times when the exercises are quite frustrating. Sometimes I stare at her like, “Are you serious? I should be able to do this?” But every time I keep going and keep trying, and eventually what I thought I’d never be able to do I’m slowly able to do! It’s only with time and practice at home that my foggy brain is starting to recover. I’m lucky I have Mitch to practice my brain therapy with.

Thyroid 

While I was getting set up and going with speech therapy I also had blood work done in Omaha that neurology at MD Anderson had ordered. This blood work came back a bit odd. My TSH (or thyroid lab) came back double what it was in October 2022 and my vitamin B6 levels came back high. These results puzzled me, so I reached out to the ordering provider for neurology at MD Anderson. They replied: “not our speciality” and “good luck.” 

This made me mad for quite a few weeks. What type of provider orders labs, has them come back out of range, and then says not our problem?! On top of being dismissed by them, they wouldn’t discuss anything with me. When I say anything, I truly mean anything. They wouldn’t tell me if they thought it was cancer-related or not, if it could be causing my memory issues, or even why they ordered the labs in the first place. They just kept responding “not our speciality” without a referral or any sort of differential. For being neurology, they sure lacked any thoughts in their heads. 

Seeing as my potential thyroid issues were now solely my problem, I asked my primary care provider to get the labs redrawn at my yearly physical that was scheduled for the end of December. Of course she agreed. I got the labs drawn the day after Christmas. This time my TSH came back normal, but my T3 and T4 came back low. Confused, I headed into my physical ready for answers. 

Unfortunately for me, my primary care doctor was just as confused. She thought my labs were indicative of primary central hypothyroidism. This would mean something was wrong with my pituitary, a tiny gland at the base of the brain. This didn’t make sense though, because I had a brain MRI in September that showed nothing wrong with my pituitary. Confused but not willing to give up on me, my primary sent me to the med center for repeat labs on a more sensitive machine. 

I had those labs done late January. This time my TSH and T3 came back normal, but my T4 was showing a continued downward trend. These lab results would further prove the primary central hypothyroidism, a diagnosis my primary care agreed. She put in a referral to endocrine and ordered me another medication, Synthroid, or synthetic thyroid hormones to treat the issue. I was hopeful I could see an endocrinologist before starting Synthroid, so I started to call around. 

I called MD Anderson first to try and add an endocrine visit to my end of January trip, but there were no openings. The soonest they had was February 29th. I seriously thought about changing all my MD Anderson appointments to late February, when Methodist endocrine called me and said they too could get me in on Feb. 29th! I took the local appointment instead and have decided to continue to wait to start any meds until I am seen by an endocrinologist. What’s another month of symptoms at this point? I’d rather they see me at baseline, than half cooked with new meds in the system. 

MD Anderson Return Visit

After the last three months of watch and wait, coupled with figuring it out on your own, Mitch and I flew back to Houston on January 29th, for my three month follow-up appointments. We flew via Southwest on their Medical Transportation Grant Program. I’m normally not a Southwest gal because unassigned seats give me mad anxiety, but Southwest gives patients at MD Anderson 6 free travel vouchers a year for flights to Houston for treatment. Anxiety be damned when it comes to free! It was all set up through social work at MD Anderson. We received our flight vouchers the 1st of the month. I called a special number on the voucher and our flights were booked. It took the smallest amount of extra work, but I can’t argue with free. To their credit, the flights went absolutely smoothly. 

After landing in Houston, we went to check in at Dan’s House of Hope. Dan’s House of Hope (DHOH) is a home about 10 minutes from MDA in the museum district that AYA patients and their caregiver can stay at for free while receiving treatment. DHOH is the brainchild of an AYA cancer patient Dan. He had seen first hand the need for free housing for AYA patients traveling for the best care. He always wanted to open a space for AYAs to stay and more importantly to connect with other young people. After his passing, his parents Dawn and Roger opened DHOH in 2014. Mitch has been attending their Caregiver Coffee series on zoom for months, so a stay at DHOH only made sense.

We had our own beautiful room with two beds, our own bathroom, and a full huge house to take advantage of. I was able to do yoga outside in the Texas sunshine with only the birds chirping in the background. Mitch was able to get some work done at the big solid wood dining room table. And overall we felt like we were at a loved one’s home and not a stuffy hotel. We also connected with the other guests and even ran into them at MD Anderson while at appointments! It’s a beautiful space where the stress of the medical world can melt away and peace overcomes you. 

That peace was much welcomed, because I had lots of appointments while in Texas. One was with reconstruction surgery. I was most excited for this appointment, because I thought I’d get told they could do some lymph node bypass or transfer in my chest without having to do a DIEP flap. But alas, my lymphedema isn’t deemed bad enough yet, so it’s not an option for me at this time. If I wanted it done, I would still have to do reconstruction and even then insurance may not approve the lymph node surgery since my lymphedema is being successfully managed by less invasive treatments. It was quite the bummer, but I appreciate the surgeon being straight with me. I know where it stands now. 

In better news, I met with a lymphedema therapist who had lots of resources for me to get my stupid (but yes helpful) compression bras ordered where it will all be covered by insurance. I’m grateful for that, because I’ve been paying out of pocket for the brands I like, as Omaha doesn’t have a local supplier. 

Finally in the best news of the week, the PET scan I had showed only some really mild skin thickening on my non cancer side. That’s most likely the keloids from mastectomy and nothing to be concerned about. This is fabulous news and I feel like I’m officially really cancer free. Now it’s just a matter of dealing with all these long term side effects from poisoning and ripping out parts of my body. Again, that’s a story and blog post for another day. In the meantime, enjoy these photos from the little excursions we did between appointments. And as always have a magical day.