F%#k…
I used to always think it was bad excuse to claim that sometimes there are just no better words to use for the situation than a harsh swear word. Forgive me all of you whom I judged for that previously.
After meeting with the oncologist to go over what we saw, we have a little more clarity of what is happening, and some initial next steps for Elizabeth. The spot on her liver they have been watching is the same spot that was originally in the scans in October 2021. The spot disappeared with the chemo treatment, but came right back in the same spot. So it was not visible to a scan in April, 10mm x 7mm in August and it is now 16mm x 20mm.
The location of this spot is very close to her diaphragm so they are nervous about doing a normal biopsy for fears puncturing her lung in the process. They aren’t looking to see if it is cancer, rather to see what kind of cancer. To be able to choose next steps for treatment, they have to make sure the cancer has the same markers as the original cancer found in the breast. The other option to get that same information, which we plan to take, is to do a surgery to cut out that part of her liver. If you cut it out, she’s good to go right? I wish that is how things worked.
The best way to describe it is like a leak in a house dripping on the drywall ceiling. Cutting out the chunk in the liver is like removing the drywall but still not knowing how to stop the leak or even where it is coming from. With the drywall gone you prevent your ceiling from getting saturated and destroyed, but you are going to have water damage issues again eventually.
To sum up, next steps for tradition medicine route is to get the spot cut out through surgery and then adjust current medication to slow the spread (no COVID pun intended). This route, according to their words, is to prolong life. The verbiage they use has changed from cure to extend life. This is why we are in the process of consultations with alternative cancer treatment options. Folks who still work to cure.
I started my research on these types of treatment centers back in August when we first found the spot. We have narrowed it down to four places that we’ll be doing initial consultations with in the coming week or so. The price tag on these are tens of thousands of dollars since insurance won’t cover non-traditional medicine. That is why we have started this fundraiser https://givebutter.com/elizabethbone
In times of trial people want to help in the ways they know how. Sometimes the attempts at helping end up not being helpful. That said, I’ve compiled a list of things that are helpful to us as well as things that are not. If you have done something already that I state is not helpful, do not feel bad. You didn’t know and I love you so much for wanting to help.
Helpful- Specific prayers. I’ll post another blog later with examples.
Not Helpful- Giving medical advice. We have a great team of doctors and health providers, both professional and family/friends who we bounce all things medical to. Cancer is super unique to each person and knowing someone who did something once, or quoting an article you read quick will be more likely to cause confusion or frustration than be of help. Exceptions to this rule are those of you who have gone through the cancer treatment journey yourself or are currently practicing medicine… you can speak up.
Helpful- Gift cards to Kroger, Panera, AKA sushi, QDoba, or OGMA Brewing co. These places have the best vegan/gluten free/dairy free options in Jackson that Elizabeth can eat.
Not Helpful- sweets for our boys. These guys are amazing and full of “Duncan Bone” type energy. If you know me, you know that is a lot. Sugar added to that makes tough days tougher.
Helpful- Promoting our coffee shop, Fortress Cafe. I will be spending less time there to help with Elizabeth’s health and treatment journey. It is our livelihood and your support in spreading the word about that is greatly appreciated.
Not Helpful- Telling us to have certain emotions. “Be this”, “be that”, “just think this”, “it’s going to be fine”. All of those things may be true, but are unlikely to be received well. We have a deep faith and trust in the Lord. That is not wavering. If you are ever concerned about my faith in this journey, let’s get lunch and I’ll tell you all about it! This is similar to how a man should never tell a woman that giving birth isn’t that bad. Dudes don’t know about birthing like those who haven’t gone through life threatening disease don’t know the emotions of it.
I say all of this because I love you dearly. If you are close enough to us to be in conversation, I know you care about us and mean well. This is such a hard time for us and I know you wouldn’t want to add to it in any way. That is why I feel it necessary to give this warning. I’m sure these things will still happen and I won’t hold it against anyone. Seriously, I love you. I’ll hug you. But I might tell you that wasn’t helpful.
If you would rather help in more of an immediate way for the day to day stuff, we started an amazon wish list that has items that are helpful: Elizabeth’s Help list.
More info will come as we get it. Again, I love you for reading this far. If you see me (Duncan), come give me a great bear hug. They are always welcomed. Another blog with our thoughts, faith perspective, and ways we have faith, hope and joy in this time will come soon. That will have more of my usual laughter among the tears type content.
With Love,
-Duncan and Elizabeth