Hello! It has truly been way too long since I have written a post and shared with you all. I have sat down many times to write this post and others, but I have had a hard time expressing myself in words.
Since my initial diagnosis I have focused on staying positive, believing in myself and my body, along with making sure that I am surrounded by love and light. These are the parts of the journey that this blog is based on and that I love to share. Over the last few months it has been harder for me to stay in this mindset, harder for me to quiet my mind and much harder to accept what was happening to my body and my spirit. These feelings are also much harder for me to share.
At my last update with you I had stopped the oral chemotherapy (Xeloda) and was looking into all the options available to me. My CT scan at the time showed significant growth in the liver, lungs and lymphatic system, even while on the oral chemotherapy so they stopped the Xeloda. They were offering me another chemotherapy combination but in my heart and my head, I knew that I was not strong enough to do it. I needed to hit reset both physically and mentally. At this point it felt like nothing conventional was going to work.
I focused on my natural treatments and dove right into researching different clinical trials that may be better suited for me than another round of chemotherapy. We ended up sending all my scans and bloodwork back down to the Mayo Clinic and chose to participate in a trial through the Side Out Foundation. Here they take a biopsy of a solid tumor (in my case it was the liver) and do a bunch of genomic testing on it to see if any genetic variants or mutations appeared that they could target with different drugs. We liked that there was no commitment to have to start one of the chosen therapies so it was a good starting place for us. It would give us more information about the cancer and hopefully point us in a direction for some more targeted treatments.
Fast forward to the trip to Arizona. I had to stop taking all my pain medicine (I was using cannabis oil and Naproxen) 5 days before the biopsy as they didn’t want my blood being too thin. I had been on both of these for quite some time so stopping them threw me a big curve ball. It was the first time I realized how bad things had gotten. By the time we made it to Arizona I was in so much pain, my breathing was very laboured and I had a horrible cough. After seeing the doctor they did a CT scan right away to rule out a blood clot in my lungs from the flight down. They did all the necessary bloodwork for the biopsy, gave me some pain medicine that unfortunatley didn’t touch my pain and I was supposed to go in for the procedure the next day.
We made it back to the Mayo the following day to meet with the doctor and found out that my bloodwork was really poor and my liver was showing signs of failing. Normally I would not even qualify for the trial based on these results but they had talked to the study leaders and decided they would go ahead if the doctor and I wanted to proceed. This news combined with how I was feeling made the decision not to do the trial easier. I wanted so badly to participate but my body was clearly saying it had had enough. After talking to the doctor about the bloodwork and CT results we came to the conclusion that I needed to come home and get started on chemotherapy again right away. My options were to either do the chemo or do nothing and treat the symptoms as they appear. I had been focusing solely on alternative treatments for about 6 weeks and things had progressed drastically so keeping on that route was frightening. I knew at that precise moment that I had to keep fighting. I was not ready to say it was over.
Once the decision was made I was able to start back on my pain medicine right away and was feeling much better within 6 hours of doing so. I even got to enjoy the sun and the pool a little bit before we headed home.
After coming home we met with my oncologist right away. My bloodwork was continuing to deteriorate but I was determined to get started on treatment right away. This was the hardest appointment we have had to go through yet. My doctor went though all the Palliative Home care information with us, the Goals of Care Designation and all the conversations that you never want to have with your doctor and your husband at 30 years old. I feel like this quote from another woman living with Stage IV Breast Cancer says how I was feeling really well:
The goal this time around would be to regain some control over the cancer and hopefully shrink it back so that I would qualify for future trials. I was am still am ready.
And finally………..TODAY. I have done 3 rounds of the new chemotherapy which is a combinations of two agents: Carboplatin and Gemcitabine. I am on a modified schedule due to side effects and blood counts but I get my treatment every 2 weeks. The side effects have not been pleasant but each treatment has been better than the last as we have been able to adjust my anti-nasuea medicine each time and some of my IV fluids through my naturopathic doctor. My alternative treatments are continuing and they include High dose Vitamin C, Artsenate, Mistletoe and localized hyperthermia 3x with each treatment. My diet and juicing have suffered as I have been unable to eat much over the last few months. I basically have to eat whatever I can to start putting some weight back on and get some nutrition. When I feel good this is easier but when I feel terrible Mexi Fries and Cheerios seem to be the best option :).
I am slowly coming out of this place of sorrow and fear. Your kind words in emails, the mail and visits have re-ignighted my spark. Although my side effects keep me from doing a whole heck of a lot right now, I feel the love, energy and light around me more than ever. I feel like I am ready again for whatever this Cancer has in store for me. I am just not ready to let it take over.
And FINALLY some good news in all of this. My last bloodwork showed that my liver function has drastically improved. I get scanned again next week which will give us a better idea of whether or not the chemo is working. The greatest motivation to move forward and continue pushing through treatment is how I feel. My pain is 75% better than it was before, my cough has almost disappeared and I can no longer feel my swollen liver. Our fingers, toes and hairs are crossed for some good news next week and I will be sure to keep you posted with an update (much sooner than this one).
Lots of love,
Lyndsey
xoxo