The response to my first blog has been so heartwarming, encouraging and uplifting and I am so honored by how many people took the time to read it and comment. Thank You!
When we learned that the cancer had spread from the surgeon who did my biopsy, we had no idea what that meant. The surgeon told my husband, before I even woke up, that they didn't even have to biopsy my lung, that there were tumors all over my chest cavity and diaphragm. The way he said it my husband wasn't even sure I would even wake up. Some doctors should just not be allowed to talk to patients and their families! Thankfully, at 5:30am the next day my oncologist came to the hospital and calmly told us that we didn't need to cash out our retirement or create a bucket list. (Though Ramsey did go buy a hot tub later that day?!?!?) She said now we treat the cancer like a chronic condition. It will never go away, and there is no cure, but we will treat it. The bad news is because cancer seems to be smarter than anything else in the world, the cancer will learn to beat each treatment at some point. She said her job was to stay ahead of the cancer and when one treatment stops working to be ready with the next. This conversation plays over in my head anytime we hit a setback - like the one we had 2 weeks ago. I, and so many others, desperately need the doctors and scientists and researchers and fund raisers to keep working tirelessly so that when the cancer outsmarts the medicine that there is another answer on deck and another in the hole....
My first treatment was Ibrance which was a daily pill and also a monthly shot in both butt cheeks -- you would think I would remember the name of that but I don't! At the time that I started this protocol the longest anyone had been on the meds was 9 months. It worked for me for 2.5 years! What's strange about MBC is that you never know how it might tell you that it has outsmarted the medication. In my case I was on a business trip to Chicago in May of 2018 and started to lose my voice. I thought it was a cold or allergies, but it kept getting worse. Once I got home, I couldn't finish sentences without running out of volume, I couldn't make noises that required a lot of air or raise my voice. I had to shout at drive thrus just to sort of be heard. It took me a few weeks to decide to call the doctor because I didn't want to be "that patient". After some tests and seeing some other specialists, it was determined that one of my vocal cords was paralyzed...and this was an indication to change treatment. I will tell you that being treated for a paralyzed vocal cord was one of the worst things I have ever gone through. While figuring all of this out we were also moving from Nebraska to North Dakota, so I switched meds to Xeloda before we left and then was treated by an ENT in North Dakota to help my voice. In order give me my full voice back they need to plump up my paralyzed vocal cord so that it would touch the other one to make noise. So how does one plump up a vocal cord you might ask? By injecting it with filler like you would to plump up your lips. But in order to do that the needle has to go through your throat! First, they numb your throat with a spray that tastes like every bad medicine combined in to one. It makes you choke, and gag and tears run out of your eyes and snot out of your nose. Once that numbing takes effect, they inject more numbing meds and then guide a needle through your throat and into the vocal cord. I had this procedure done 3 times before the new meds got things back in line and I dreaded it each and every time.
The Xeloda only worked for a about a year - not nearly long enough. This time I didn't have any weird symptoms, but my tumor markers were climbing in my monthly blood tests so in July 2019 we switched to Exemestane and Evorlimus. I took my last dose of those two meds tonight and as I did, I thanked them both. One is a tiny pill that always wanted to escape and go down the sink drain, and one come to the house every month by special delivery with a biohazard mark on the package. No one in my family likes to touch the biohazard boxes! These two pills kept my cancer small and quiet for 3 years and 7 months.
My new oncologist in Texas said he has never seen results like that. When the cancer outsmarted these two it let me know in a loud way by filling my left lung with fluid. On a Thursday night in late March while I was picking up balls at tennis practice, I had trouble catching my breath..I chalked it up to being out of shape. The next day we drove to Nebraska and I got out of breath taking my suitcase into the house. The next day it happened when I walked up a flight of stairs. At this point I knew something was happening. We came back from Nebraska Monday night and Tuesday after getting through my morning meetings I went to urgent care. The x-ray there showed that my left lung was about 90% whited out.
The PA thought maybe a collapsed lung, so he sent me to the ER. At the ER I had another x-ray, lots of blood work and a CT scan. The ER doctor wrote on the board that it was fluid and that can be caused by 3 things. 1. Infection - I had no fever, no cough, no other signs of infection 2. Organ failure - I was clearly not in organ failure or 3. the cancer was active. The writing was on the wall literally and figuratively. They admitted me to hospital for the night to have the fluid drained the next morning. The next morning, they drained 1.3 liters of fluid from my left lung and sent it for analysis but the general consensus among the 4 doctors I saw during the stay including my oncologist is that the cancer was the likely culprit.
So here I am on the morning of starting my 4th type of treatment. It's been 7 years and 3 months since we started the journey of treating an incurable disease. I am hopeful that I will have as much success with this treatment as I had with the last one...current studies show success of a year so with my track record I expect at least two years. Getting IV chemo feels like a step backwards after only needing oral meds but I trust the doctors and I trust the process. I will be getting an infusion of Enhurtu once every 3 weeks. I hope the side effects are minimal, but they do think I will lose hair again. I look at the positive side and will be happy not to have to shave my legs all summer. As we have done since day one the four of us with all our family and friends supporting us will take each day as it comes, we will live life as we always have and tackle each obstacle together.
One of my favorite family photos - June 2015
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