June 8, 2023
Yesterday I had an appointment with a naturopath in Philly who worked at the Philadelphia CTCA until it dissolved a few years ago. She was outstanding! She has a wealth of knowledge in the cancer arena and lots of experience treating CLL/Autoimmune Hemolytic Anemia patients. She affirmed my desire to dodge the chemo bullet, and has patients who have been able to do the same. She spent over two hours with me, discussing every nook and cranny of my current health challenges and fine tuning the game plan. We decided it makes sense to give my body four more weeks to heal, and then return to CTCA for the bronchoscopy. I'm praying that God will continue to heal and guide!
May 24, 2023
I just returned home from City of Hope where I learned my CLL and Autoimmune Anemia are stable (hallelujah!!), so I only need to do labs once a month now (I had been doing them every 2 weeks)! My doctors were quick to point out that either condition could rear its ugly head at any point, but for now things are stable and I plan to enjoy the reprieve. I am to return in three months. However, the CT scan of my lungs revealed some concerns, so we followed up with a PET scan which showed some more concerns.... Ugh! The next recommended test is a bronchoscopy to see exactly what is going on, but I was feeling unsettled about moving forward, and chose to come home and give my body a bit more time to heal until I make a decision on the next step. Prayers for wisdom and guidance, please!!
On the flight out to Chicago, I had an amazing encounter with a gentleman who was familiar with using fasting as part of cancer treatment. It was just another confirmation that I'm on the right path and that God guides!
May 20, 2023
I've been wanting to keep friends and family up to date on what has been transpiring with my health this past year, but it's just been too overwhelming to keep everyone in the loop! A friend suggested that I go back to blogging and simply write it all in one place where people can read the updates as they wish. So, that's what I'm attempting to do here!
Backstory:
I was diagnosed with Chronic Lymphocytic Leukemia (CLL) in January of 2022. Staging revealed I was stage 0 with a good genetic risk, and the hope was that I would outlive it without needing to do any treatment. So, I went about my life and didn't even bother telling many people about it.
But, in September that year, after an epic cross-country trip to Utah, I landed in the hospital with a diagnosis of Autoimmune Hemolytic Anemia, a complication that can develop with a CLL diagnosis. My hemoglobin had dropped to five, and I ended up needing two units of blood! The doctors put me on a high dose of Prednisone and we started discussing what the next step would be in treating this tricky combination of diagnosis's.
After lots of doctor consults, I finally consented to doing 4 infusions of Rituxin. I didn't feel settled about doing it, but it appeared that was my only option, and I knew I needed to get off the Prednisone as soon as possible. I ended up having a severe reason to the Rituxin during the fourth infusion and ended up back in the hospital, this time the ICU. Scans showed damage to my lungs, and I was discharged on oxygen.
At that point I knew I needed to find someone else I trusted to manage my care. The local hospitalist suggested I get to a bigger city hospital, so I reached out to Cancer Treatment Centers of America in Chicago (now City of Hope) where I had done treatment for Fallopian Tube Cancer in 2007. I had been hesitant to pursue a consult with them because I wasn't sure if they would accept my current insurance, and I was also uneasy about flying with a compromised immune system. Thankfully, they accept my insurance and I was able to get an appointment quickly. I spent the week of Christmas there doing tests, consults, and IV IG therapy. The most appealing part of CTCA to me is that even though they are a main stream medical system, they know that patients need naturopathic, nutritional, spiritual, and mind body care in addition to traditional cancer care.
Chemo was recommended in January, but I begged for a bit more time. I came home and did everything I knew to do to help my body heal and regroup. By the time I returned in February, my labs had settled out enough that chemo was put on the back burner for now!
I firmly believe our bodies are designed to heal themselves if we can first, do no harm, and then get out of the way and give our bodies space, time and added support so that they can do what they need to do. As a result, I have been on a journey of seeking out effective holistic care to supplement conventional treatment. Under the guidance of several naturopaths with specific expertise in treating CLL and autoimmune anemia, I've been utilizing water fasting, intermittent fasting, a zero carb diet, multiple supplements, Frankincense, movement, mindfulness, and infrared sauna to give my body the support it needs. I would be ever grateful for your prayers! I also believe it's imperative to listen to your gut sense (that amazing combination of wisdom, experience, and the Holy Spirit's guidance) when making medical decisions, no matter how irrational it seems. It can be hard to drown out all the noise pollution and conflicting opinions, so I would appreciate your prayers for discernment in this area as well!
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