TRUST YOUR INTUITION, TAKE 2, PART 2

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Since my diagnosis, I have seen an oncologist, a breast surgeon, my plastic surgeon and the nurse practitioner who is very nice but has yet to do anything she said she would, no follow up, no checking in, no guidance.  I have been told I need radical surgery to remove the rest of my breast skin and some muscle, no more implant, that I will have the axillary nodes removed from my armpit to make sure the cells have not migrated beyond the breast, and that I have to have chemo, just not sure which one yet. I was sent for a PET scan where they inject you with heavy steel thick case carrying nuclear radiation and glucose but then told, thank goodness, that the cancer has not spread however, PETs can’t pick up small cancers so I still need chemo. But at no point did anyone stop and look at what may have caused this. When we asked, they dismissed the question. No idea why it’s back, if it’s recurring or new, just that I have it and it needs to be treated. That does not sit well with me. None of this does. 

The breast surgeon did say I was an anomaly. Most people she sees with a reoccurrence are usually within a few years, not 7.5 years later. Maybe, I thought, it’s because I changed my diet enough to keep these little suckers at bay, but the stress of the past 1.5 years starting with my sister’s diagnosis, my father’s passing, my foot surgery, my sister’s downward spiral, and my training for 2 marathons in that time all proved to be too much for my immune system and the little buggers took full advantage of that to start growing. Maybe if I find a way to reduce my stress, we can make the rest not grow.

Sometimes I think how strong I am that I ran a marathon with breast cancer, other days I feel like my life is a marathon causing my breast cancer.

Trust your intuition – Take 2, Part 3, Treatment #1

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My port was placed Feb 15, 2019, and after a quick trip to San Francisco to tour colleges with my daughter, chemo began Feb 26, 2019. The worst part for me through the entire process was the IV benadryl, the rest went through fine. I had read a study and listened to a talk given by an oncology nutritionist that suggested fasting for 48 hours, a water fast, before and through the day of chemo. I fasted on the 25th with just water and a cup of black coffee, continued the fast on the 26th through treatment, ate a small meal of under 500 calories after treatment per the protocol, and then fasted through to the next morning when I broke my fast with a smoothie. The  nurse thought I was nuts and that it was a bad idea, she laughed at it but then I showed her the research. She asked the other nurse who had actually taught my chemo class, and that nurse said I was the 3rd or 4rth person to ask about it and encouraged me to try it and see if it works for me. I really believe it did.

They started me with Decadron, a steroid, which I was unaware of. I was supposed to have been called to pick up an order of it to take before chemo day, and the morning of chemo day. As mentioned earlier, my nurse manager has not been in contact with me at all. Neither has my oncologist other than the day she rambled off the treatment protocol. I had to stop her and ask her why we were going with the new route, if she thought it made sense to her based on what Dr. Isaacs had discussed with her, which she said she did. As soon as she answered my question though, she went right back to where she was in her memorized rant. I listened as well as I could and caught on to most of what she was saying. I don’t recall the Decadron though and was never told by anyone that an order was placed for it and that I had to take it before chemo. So frustrating. 

They ended up giving me the Decadron via IV, then the Zofran for anti-nausea, then the Benadryl which I felt coursing through my body, up the back of my head, making my arms and legs ridiculously heavy, my hands useless, but after all that, I was fine. I still have the back head headache though which I think is a result of the benadryl. After that we started with the perjeta, a 60 minute drip, then a 60 minute break to monitor for reactions. There were none other than almost getting sick at the beginning but I think that was still from the Benadryl. Break over, we started the 90 minute drip of Herceptin. Through both of these I had my feet in frozen booties and my hands resting on gloves of ice, as much as I could, to try to constrict my blood vessels in my hands and feet so the meds would not go there and cause nerve damage, ie neuropathy. After Herceptin, we had another 60 minute break then started the Taxotere for 60 minutes. No probs. So we went right in the Carboplatin after that for 30 minutes, though the first 15 were a slow drip. When all was done, she said I did great. Maybe the fasting helped!

As we were checking out, I had all my drugs ordered and picked up, Decadron for the next time, Zofran for nausea. But no Zarxio…..that was one thing I heard the oncologist say to me in her rant because it terrified me. I knew I would have to give myself a shot daily for 7 days to keep up my immune cells. The worst time for neutropenia is 7-10 days post treatment. For some reason it was not included on the order. The oncologist was shocked and said of course I have to have it. Again someone  not following through. Her ears must have been burning because she just called as I am typing  this to see how I am doing, go over everything, let me know that she was upset the Zarxio was not included in the order form and made sure to have it put on all future orders, and asked if I had any questions because she knew that the last time we spoke everything was really a whirlwind for me with the change of plans (I initially was supposed to start with surgery). Would have been nice if she made this call before I started chemo, especially knowing how much I did not want it, but at least she called. So I get to start the fun of self-inflicted needles tonight…..

TRUST YOUR INTUITION, TAKE 2, PART 3

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After meeting with another oncologist at Georgetown Medical Center in DC, Dr. Isaacs, and speaking with a  medical oncologist at Dana Farber, Nancy Lin, MD., it was decided that because I have triple positive breast cancer, ie estrogen positive, progesterone positive, HER2 posiitve, with a tumor over 2cm in size (exact size unknown as the plastic surgeon excised some of it so this is based on what is left) that my best course of action is neoadjuvent chemo treatment, 6 cycles, spaced 3 weeks apart. This cocktail consists of TCHP – Taxotere, Carboplatin, Herceptin, and Perjeta. After this, I will have surgery to remove everything, including lymph nodes, and see if the regimen worked. If it did then I will continue with just the Herceptin for the remainder of the year. If it did not, they will then switch me to TDM1 which is a chemo combined with the Herceptin to directly target the HER2 cells. 

This all was a huge source of contention for me. Knowing what I know about chemo, following documentaries like TTAC and Chris Beat Cancer, I really wanted to consider going naturally. What does that entail? I am not completely sure. There is the Gerson Therapy, there is Crazy Sexy Diet by Kris Carr, there is the Budwig Diet, and so many more. There are combos of Vitamin C IV infusions, Hyperbaric Oxygen Chambers, Coffee Enemas (though I am seeing arguments against this), Infrared Saunas, drinking tons of carrot juice, and more that I am still unsure of. The expense and keeping up with all of it makes it all not feasible since most insurance won’t cover natural treatment. I know someone who went to the Hope 4 Cancer to treat Stage 4 metastatic breast cancer. Though she fully believes it is working, the cost is astronomical. I believe it costs about $47,000 for 3 weeks. Then you have to keep up with the treatments at home, on your own. She is gearing up for her second return but it looks like she will need another $20,000. We think Big Pharma is expensive?! Natural treatments are not any less. The price we have to pay for our health is unfair.

Regarding the effects of natural treatment, most the stories I have read are anecdotal, no scientific proof. Some argue for Keto Diets while others state that actually makes cancer grow, I have seen research on both through the NIH where the Keto  starving the tumors was based on a 5 week study, longer term studies showed that the cancer cells adapted, like they are so good at doing, and began feeding off the ketones after 5 weeks.  I already eat sugar free (for the most part), gluten free, and am an ovo-vegan. I have removed my inflammatory foods, so I am not sure if the natural methods will even work. I know this way of life has really helped me keep the cancer at bay for a much longer period of time then expected, but stress…..that’s a whole new area for me to tackle and not easily controlled. I am just grateful that I am so in tune with my body that I am able to know when something is not right and am able to trust in that instinct to get the answers, even though they are not always what I want to hear. So though I really wanted to try natural, it is not feasible and it scared my family, not trusting in it and believing in the science. I decided that since it was all way too controversial, I would try the chemo but support it as naturally as I can.