Yesterday I had my 19th round of weekly chemo. It was a day filled with wonderful conversations, laughter, and hope mixed with frustration and disappointment. If you recall, I have been waiting on Seattle Cancer Care Alliance (SCCA) docs to determine if a small liver metastesis is new or old for 2.5 weeks. It took multiple emails and being the squeaky (polite) wheel to FINALLY get a concrete answer. The radiologist determined after viewing all of my old images that this small met IS new compared to my CT in April. We have no idea if it was there when I started chemo (very likely). This met was 5mm at the July CT scan and *shrunk* to 4 mm 4 weeks later at my liver MRI. However, my surgeon wants to postpone the surgery to remove my implant and any disease left in my breast for at least 3 months and then reimage to make sure the liver met is “stable”….even though it’s already shrunk. I also explained to her (as did my oncologist) that the longer we continue chemo the more likely I am to suffer from a reaction, loose my hearing, and drop my blood counts. She called my oncologist who wants me to have the surgery ASAP while we have control of the chest recurrance and deal with the liver met later but she refused to budge. She said it was SCCA protocol and she wouldn’t deviate from that.
I asked my oncologist if it would be wise to seek a second opinion and he said yes. He recomended two surgeons at Swedish and put in a referral for me to see either of them. I asked Dr Chue if it’s has been his experience that SCCA docs pretty strictly adhere to “standard of care” and Swedish docs are more likely to think outside the box with him and he said yes. If you think about it, SCCA is a teaching and research facility as much as a treatment facility so they offer only standard of care or their clinical trials…that’s is. Unfortunately, there is NO CURE for stage IV cancer with standard of care.
In the flip side, Dr Chue has been deviating from standard of care using low dose, weekly “metronomic” chemotherapy, sequential chemotherapy, and low dose immunotherapy for 30years. Patients who are told to go home and die by SCCA and even Swedish oncologists are usually blessed with many more years and some have achieved NED. In fact, he published his second case report of a TRIPLE NEGATIVE breast cancer patient who has achieved NED for 7 years after treatment (the other is 16 years NED). You can read the article here So you can see why I trust Dr Chues judgement over the judgement of a doctor that took 2.5 weeks to give me an answer.
Naturally, the information about the new liver met and the surgeons refusal to operate soon was disappointing but I didn’t let that ruin my day. Awhile after I sat back down, one of my Friday treatment frinds has not been doing well and they discovered she may have a blood cancer in addition to her other cancer. Her choices are a new med or call in hospice. Her daughter was trying not to tear up as they discussed the new med and not giving up. I recognized the name of the drug and realized a man used some other off label meds alongside this med to heal his terminal cancer so I shared his blog with them as well as the info on the How to Starve Cancer book. Her daughter immediately looked them up and I could see her eyes fill with hope.
Then a little later, a new patient sat down next to me who has liver mets from another cancer. We talked a little bit and I noticed his sister was reading a book. I recognized the corner and asked her, “are you reading How to Starve Cancer?” She replied yes and asked if I’ve read it. I told her yes and that I’ve been following that metabolic therapy for 2 years with liver mets. They became very excited and started asking questions so I was able to share the condensed version of my cancer journey. We talked nutrition a bit and he complained about not being able to eat carbs or sweets so I quickly made suggestions of LOW GI foods that he can he and he was SO excited!
So despite my frustration and diapointment, I knew God used me to help two of my fellow cancer patients and that made my day! In addition, a dear friend drove me and my chemo buddy to and from chemo and we had some great theological discussions to/from and during treatment!
Then, when I got home, my husband surprised me by having taken the day off and cleaned the entire house for me because I didn’t have the energy to stay on top of everything the past week. This past week Ive been struggling with nausea, diarrhea, GI pain, and fatigue. The chemo, while low dose, still has a cumulative effect and are causing more side effects and my blood work is on a downward trend. If we don’t get a handle on that, I may HAVE to stop treatment and not be eligible for surgery anyway for a few weeks. Just another reason to do the surgery sooner.
Again, I’ve been covered by God’s peace and joy and see His hand at work on this journey. I am doing a Bible Study through BSF international and we are currently reading through the book of Acts and He is teaching me so much about the power of the Holy Spirit. I look forward to leaning more and becoming more spirit filled with boldness to share not just my cancer journey but the gospel.
I would appreciate prayers for God’s wisdom, for continued healing, freedom from side effects, that my blood levels will come back up, and for God to continue to be glorified.