Swimming Upstream

I went in to meet with my 3rd Oncologist thinking it would be easy...I already had the plan from Pittsburgh, backed by Cleveland, ready to go. The local oncologist threw me for a loop when he suggested a different chemo regimen called AC-T. His plan was to do 4 rounds of the AC (Adriomycin & Cytoxan) every 2 weeks, followed by 12 weekly rounds of the "T" (Taxol). He seemed shocked that my Pittsburgh Doctor wasn't suggesting the same, and he was very adamant that his plan was the better option. I was back in a world of questions, confusion, and frustration. I wasn't surprised that a local doc would have a different opinion, but it was his extreme adversity to what the others had suggested that left me paralyzed once again. I asked him to call my doctor in Pittsburgh to discuss their differing views. We then shifted the discussion to my CT scan results...

I felt so anxious at 11 weeks out from surgery with no solid start date for chemo. On top of that, my CT scan revealed "Enlarged Axillary Lymph Nodes". Go figure! To this day, I'm most proud of myself for pushing for the scan. With 2/2 positive sentinel nodes removed at mastectomy, I knew I had to dig deeper into what was going on in the nearby area. The scan was of my chest, abdomen, and pelvis (with and without contrast). Thankfully, everything else was clear, but I was still so maddened that it took me so long to get to this point. I had to ask about a CT many times before resorting to demands to get this scan. I felt like I was constantly swimming upstream. This may seem trivial, but it certainly played a HUGE part in my treatment plan and my decisions to come.

My positive sentinel nodes already placed me in the "need for radiation" category to damage/kill any localized cancer cells. And although I was 2/2 on the wrong side of the disease, there was no talk of any further exploratory or preventative surgery. This, of course, was before "enlarged axillary lymph nodes" became a more tangible report instead of a sneaking suspicion. To confirm why the nodes were enlarged, I went back to the breast imaging center for another node biopsy as there was a chance that we were simply dealing with a post-op, trauma-induced response. More days passed...more time spent waiting...

Ultrasound-guided needle biopsies are about as fun as they sound, by the way. I may not have been able to feel my mastectomy flaps, but I could still feel my armpit/axilla. Mind you, I was also working full time through all of this, and this was a not-so-fun lunch break. 0/10 recommend. I don't want to lead anyone to think that I regret any of this in any way, though! I'm just keeping it real. I know there is some controversy out there regarding biopsies of cancerous tissue. I, however, felt that it was all worth it and I'll explain why later...

My oncologists were able to discuss their differing views on the chemo plan while we waited for the biopsy results. My Pittsburgh Oncologist called me to discuss her thoughts after my Erie doc had reached out to her. In summary, her plan gave me more time in between chemo infusions. She figured it would allow me to better maintain my lifestyle. The local Oncologist's plan would have the same outcome, she said; however, it would be a lot more days in the infusion chair overall. Fair. After circling back with my local Oncologist, we decided to move forward with his plan. Mostly because I was sold when he explained that his plan would be more tolerable. Looking back, I'll never know if it was. More on poison fun-facts to come.

Let's take a break from biopsy talk. Have you ever heard of decision fatigue? Maybe the most relatable comparison is when a bride has to decide on 1,000 things leading up to her wedding...the decisions can be overwhelming and it becomes so much easier to make Mom or the MOH call the shots: What should I use for my "something blue"?? What songs should be played at the reception? How do we get this guest list down without offending Uncle Jim & Aunt Tammy that we haven't seen in 10 years!? Decision fatigue is real, and a cancer journey puts you on a speed boat right to it. Not to mention, it's not as easy to let someone else decide your fate...or whether or not a medi-port is worth the extra surgical procedure right before starting chemo! insert sarcastic voice: Hang tight, cancer, I need to research the daylights out of a medi-port and ask everyone I know who's gone through it for their opinion! Well, Let me spare you from adding this to your list of decisions; GET THE PORT.

To recap my timeline here: I had a CT Scan on 9/5/24. I met with my local oncologist for the first time on 9/6. We confirmed the chemo plan of AC-T on 9/10. We discussed pathology "what-ifs", medi-port pros/cons, and more in depth chemo details on 9/11. Then we got biopsy results that I had Metastatic Adenocarcimona on 9/12. Well, Hell! I don't want to downplay this too much, but I think most cancer patients will agree that NOTHING is worse than the initial diagnosis. This was just getting annoying! Like I said earlier, I was ready to take it on, but I was so over trying to make progress while simultaneously losing ground.

While I am thankful for medical care, I realize it's also a practice. Being hyper-sensitive to that concept makes me a problem child. I find out just enough info to be dangerous. For the record, most medical doctors don't like having to fight against transparency. There is typically a protocol or a training that both makes money for the system AND protects it against liability. I think I've mentioned before that it's not in my nature to go with the grain? Well, the followings days with the system put me into self-advocacy overdrive...

Before "proof" of more cancer, the protocol was to blindly pursue the other conventional treatments (chemo/radiation). There was always a 50/50 chance that it was ONLY in the 2 sentinel nodes taken. I agree that those odds require additional attention, but I couldn't accept that there was only one way to eradicate cancerous lymph nodes. The big medical system sell was that radiation would eventually be the ticket to "survival". Keep in mind that with my higher oncotype (high risk factor for recurrence), the suggested standard of care included chemo. Chemo would be first, surgery to reconstruct after, radiation to follow. Let's also not forget that there were many attempts by all of my physicians to talk me out of the CT scan, yet here we all re-writing the playbook due to the results. I felt like a ping pong ball bouncing between the office of my local oncologist and telemed calls with my surgical oncologist in Pittsburgh. Here's a paraphrase of my convos that took place after receiving the biopsy results:

Local medical oncologist: You can't pursue chemo yet with that cancer in there! You need surgery, stat!

Surgical oncologist: With any node positivity, we treat you with radiation as though it is likely in more nodes. An axillary dissection comes with its own quality of life risks; however, we can go back in at reconstruction and do the axillary dissection at that time so that the plastics team can do a lymphatic reconstruction and limit your risks of developing lymphedema. [She referred to 2010 clinical trials called AMAROS and ACOSOG Z11 to support this.]

Local med onc: That's bad advice. The cancer needs to come out, then chemo, then you can do reconstruction after. Your type of cancer doesn't have a tumor response to chemo like other types of breast cancer.

Surg onc: I met with the Breast Program Chief of Oncology and they agree with moving forward with chemo first, surgery after.

Local med onc: Gawks at my surgical oncologist's opinion & makes a snarky remark about who is supporting her suggestion.

Me: I'm not waiting one more freaking minute to DO SOMETHING. It'll take months for my surgeons' schedules to align right now, plus I want to consolidate the surgeries. If I hadn't demanded the CT scan, I would already be receiving chemo and none of you would bat an eye. Get me on the chemo infusion schedule.

Local med onc: Ok. We will have to monitor the nodes with ultrasound as we go. If they get any larger, you're going in for surgery.

That was exhausting! There is nothing settling about having to make an important decision against a doctor's orders. It's especially difficult when the doctors have differing opinions; however I'll never forget feeling so relieved that I knew more on the extent of my remaining cancer and finally had a solid plan. Against the odds I was given, I knew in my heart that the chemo would stabilize, if not shrink, the node. I had divine clarity on that and nothing could hinder it. This was another whisper from God...just like His prior one to demand the scan. It was probably the first true moment of peace I had felt since the diagnosis.

We were finally moving forward. Planning is both my strength and my weakness; I make plans, creating list after list, maintaining organization...yet, I obsess and stress over them until they are underway or completed. I was so happy to have a port implant date (9/17/24) and a chemo start date (9/25/24). With those boxes checked, I then shifted my focus to learning everything I could about other modalities I should consider adding. The customary, everyday protocol just wasn't going to be good enough for this girl.

In the midst of all of this, I came across a podcast called "The Doctor's Farmacy" with Dr. Mark Hyman. The particular episode I saw first was called "The Functional Medicine Approach to Cancer and Cancer Recurrence" with Elizabeth Boham". Within 30 minutes, this podcast changed my perspective on what I thought I knew about my cancer and the standard of care. THIS felt like the authenticity I had been longing for. It was this podcast that would spark my curiosity into a full blown wildfire. I felt validated in all of my questions and moments of hesitation.

I was so encouraged by this podcast that I found a local functional medicine doctor and began capturing as much base line info on my body as possible. I knew I still had cancer in my lymph node and I knew I was about to endure some nasty chemotherapy...but I was determined to confidently push through it all with the full support of functional medicine.