The Node in the Road
Last week I had 12 medical related appts. I can't recall a week before when my life has revolved so much around mine and Dave's physical and mental well-being. I am exhausted. I have (only) 5 medical appts this week! What a light schedule.
On Friday morning I was given a radio-iodine scan. My fantastic technician, Jerry, helped to make the entire process pretty low anxiety. And I get to see him again this week for my treatment. He ended up having to do the scan twice because of some of the suspected concerns, so I was on a slim, metal table for over an hour holding in my arms -including my very tender arm. It was not comfortable but it's done!
Today Dave and I went to see my endocrinologist Dr Brooks to review the results. They explained that my scan showed I have a cancerous node left in my mediastinum measuring over a centimeter (1.2 CM) and cancer cells remaining in my thyroid bed. The cancer in the thyroid bed is expected after a surgery because they typically can't get everything. My endocrinologist spoke with my surgeon about the node. They cannot remove it because it's in too complex an area- and normally a node over 1 CM they would recommend surgically removing. They both recommend I proceed with RAI (radioactive iodine) ablation this Wednesday. Since the node and bed "lit up" during the scan, it gives us hope, and indication, that the cancerous tissue in my body uptakes iodine and will respond to the RAI treatment. They will scan me again after the radiation to see if any other areas "light up" and then will monitor me closely.
It's a mixed bag of emotions today. We are hopeful feeling that the tissue uptakes the iodine especially since one of the two types I have - the Tall Cell Variant - can be RAI resistant. If cells are lighting up during a scan it's a positive indication of RAI having success at reducing these cells.
Due to the Tall Cell Variant, I'm also high risk. Not for death, but for recurrence. I think this is the first time we've discussed more directly the impact of Tall Cell Variant now that my bloodwork and scans have come in. So acceptance of this more aggressive variant is difficult; looking at regular bloodwork, scans, and living in a world without much closure. That "cancer free" part looks a long ways off and that has come to be my understanding of this type of cancer. It won't kill you. But you'll live with it forever in many ways. And for me it's beyond just the medications.
Afterwards, Dave and I went to Sweetish, a local Swedish gummy candy store for (doctor's orders - no lie) sour candy which I will need during my treatment and isolation. I will need to suck on sour candy every hour to ensure my salivary glands stay open. While there I also got to see and hug a dear coworker and friend! I will also continue on my low iodine diet (LID) until Friday which will put me at 20 days of probably the most difficult diet I've ever been on. Some things to note about this diet - which works to reduce the amount of iodine in your body so when you get RAI it attacks the thyroid cancer cells containing iodine and not healthy tissue that has iodine.
-I have only eaten out one time and ordered the only thing allowed on the diet at a restaurant- a salad with tomatoes, cucumbers, and carrots with a baked potato. Hold the salt. Olive oil and vinegar on the side. And I had to pick out the spinach from the salad because it doesn't pass the LID diet.
-I have lost around 11 + lbs since May 25th
-Anything with added salt is banned on LID because almost all american salt contains iodine. Sea salt is not an adequate substitute as anything from the sea contains iodine. I have to use a kosher non iodine non sea salt.
-No dairy. No egg yolks. Pretty much no packaged food. Whole foods only.
-Cruciferous veggies don't pass like broccoli and cauliflower
-We have learned to make homemade bread in a Goodwill breadmaker I scooped up a few years ago.
-We made a tray of brownies one night that were decent.
-Staples have become oatmeal, baked sweet potatoes, pasta with homemade tomato veggie sauce
Tomorrow Dave and I will finish setting up the basement for my 7 day isolation where I'll be after I swallow the radioactive iodine pill Wednesday afternoon. We are able to enjoy some outdoor picnics on day 3 as long as we keep distance. And then I can have regular food so you can bet I'll be placing special orders!
They will scan me on the 18th to see how much tissue "lights up" but this will not tell them the effectiveness of the treatment. We likely won't know that for at least 6 months as we've come to understand the radiation continues to work in my body. However I will be following up with my doctor in the next few weeks and months. And will also be getting and MRI and seeing pain management for my upper spine issues.
This is the long haul and we are here for it. Im exhausted and hope I can rest during isolation and begin healing. I want to believe that this treatment will shrink that node and the RAI will be a success!
I am still incredibly grateful for my medical team. And for my employer. They have been supporting me with issues with short term disability and working with me through constantly changing situations. They give grace and care and show kidness and support. I'm so thankful.
Dave has been a light and a rock with me though this journey. I know I can count on him and he carries me through these tough, uncertain times. Im also so thankful for my family and their love and prayers and support.
Thank to all of you for continuing to show up. Much love and light.
Cherish always.