Find the Bright Lights
The last week has been a lot. Last Monday, the 19th, Dave took me to get bloodwork for my endocrinologist and then we drove to Johns Hopkins in Baltimore for an appointment I've had planned with Genetics for 6 months (before I received my cancer diagnosis).
Oddly enough that appointment was in the pediatric building so it was us and a bunch of families waiting. We chatted with one family, who were plain Mennonites, about where we each were from. Their little blonde daughter smiled at me whenever I smiled at her and it made me happy and calmed me. While in the waiting room and on my phone, I saw the blood test from the morning had already come back. I opened it. The number on the one test line looked high to me- based on some of the chats in my Thyroid Cancer Support Group. I tried to Google it, but quickly became flustered. I told Dave the news and I began tearing up. We didn't know what the results meant. But. We kind of knew. And then we got called back so I quickly wiped away my tears and we pressed on.
We were able to talk to the doctor about my initial Genetics referral due to a Chiari Malformation Type 1 that was found after I developed migraines and had been checked out in 2020, but things with my health had changed drastically and we now had more diagnosis to discuss. The doctor was very thorough with his questions and at the end he did a genetic test which will assist with some of my cancer genetics and a screening for the future. I will admit, at this point, I'm not sure if the there is any immediate benefit related to my current cancer, but it could help for the future and for other family members. While there Dave and I got some tasty halal food and we were able to visit the Weinberg cancer center.
I haven't been there in over 16 years - since Kevin was treated and passed away there. The lobby still has a black grand piano, large, long, glass window panes, from ceiling to floor, and an arched white steel roof. Dave and I walked in and sat in the lobby. I let some tears go as we looked at the piano. It brought back a lot of memories but also some comfort - I played that piano several times when Kevin was there and I had needed to emotionally express my pain. And that place felt unchanged. In a glass case next to us, were stained glass angels representing cancer patients. This visit was an important step in this journey. I had come back here in a most unexpected of ways.
Dave and I began driving home and about an hour into the drive, a bit before 5 pm, I received two phone calls from my endocrinologists office. The bloodwork I had completed that morning was back and it wasn't as hopeful as we would like. My thyroglobulin level was very high likely indicating there's a decent amount of cancer left. This confirmed what I thought when I saw the numbers. The bloodwork also indicated my thyroid hormone medicine was too low. My endocrinologist increased my levoxyl from 150 to 175. Another call came in and it was the radiation nurse to get a rush on scheduling a scan and treatment. The numbers confirmed a scan was needed and they did not want to wait to proceed with the diet or radioactive iodine treatment.
She reviewed the overwhelming details with me of low iodine diet start, injections, bloodwork, scans, dr appts and radioactive iodine treatment and isolation. She promised she would send it all over in a message and was still waiting on insurance approvals. My head swam and I'm sure Dave's did too as all the information came flying at us for something we had not expected to start until mid to late June. A rush on procedures never feels good.
So - this past Sunday I started the low iodine diet and I will stay on it through June 13th. Starting next week I'll begin thyrogen injections, bloodwork, a low dose radioactive iodine scan, dr visits, and then the plan is to receive a very high dose of radioactive iodine treatment on June 11th and go into a 7 day isolation. Unless the scans show some nodes that would require surgery.
The diet has been tolerable and even a nice change at times. There is no dairy or egg yolks allowed, all salt must be kosher (non iodine, non sea salt), and there are lots of limitations of foods and pretty much no processed foods allowed. So we are cooking everything at home which has been a big switch for us.
Last week I also started a Livestrong Cancer Program at the YMCA which is a FREE! 12-week, evidence based program for survivors to build back mental, physical, and spiritual fitness. The group is great. I was cleared by my doctors to attend. We did our baseline fitness tests on Thursday...and I pulled something. I've been pretty much laid up with my right arm/shoulder/neck since. I went to my chiropractor and urgent care and it seems mostly muscular, but my chiropractor did find my collarbone was out. I'm improving slowly and had to skip class tonight. I can miss 4 classes. I have to miss 2 with the radioactive iodine. Dave and I had a long chat about my goals and hopes for the program and I think I've decided to ask them to postpone my membership and restart the program in September. It's very disappointing. I realized though, that getting an injury on our first workout, that laid me up for days, is not ideal. My body is not ready even if the Dr signs off, plus I still have more treatment ahead. What I discovered I really need, and enjoy with the group, is the companionship of talking with other cancer patients in person. So I am going to make an effort to seek that out.
I celebrated my 41st birthday and it was a nice day. Dave got me a beautiful pair of Binoculars and a lovely ornament and I got some many cards from family and friends and coworkers. Thank you! It was a bright spot in this tough time.
The bloodwork update was very tough. And accepting the realities of what my body is and has gone through and what I have mentally been dealt, for years, really caught up with me. This injury has just shut me down.
Yet over the weekend time with our niece and nephew was a bright light and so much joy. Hugs from my family was wonderful. And calls with coworkers who make me feel valued and puts me at ease.
This journey is long and rocky. And I'm climbing with every ounce of being I have.