Between round two and three you either lose your hair or your don't. I spent $2,200 on the cooling cap and my hair started falling out in clumps a week after round 2. At first, I thought it was just a few strands, but then as each day progressed it just kept coming out. I was scared to brush it and started wearing scarfs. My friend Emily and I went to a salon that had a wig shop and I bit the bullet and shaved my head. I am not sure if it was the fact the Em was there or if I accepted that losing my hair equates to losing my tumor? I was ok with it and honestly it had died so it was a weird dull color. I got the wig mainly for school pick-up as Etienne is new to his school and I thought that having a bald mama would make him uncomfortable. We returned back to Ems house, the kids all came outside and asked me to take the wig off...I showed them my hair, they asked few questions, got the rest of the kids to come ove and see and then ran back outside to enjoy the weather. Later, I got, "you look like a rock star, you look like a super star.." They were all ok with it.
Round 2 was much better than Round 1 - I stopped the clinical trial med and just did the standard chemo along with my 48 hour fast. I only had the normal side effects of nausea, fatigue and weird tongue issues (mainly dehydration). I bounced back on day 5 after gorging down on a huge salad and taking a nap.
Round 3 was yesterday, I did a 48 hour fast before chemo and then fasted after chemo as well until I woke in the morning. I actually have no nausea but I am so so very tired. Armelle came with me to chemo and helped me every step of the way. She assisted the nurse with my IVs and gave me ice for 20 minutes during the infusion push.
I learned right away from a brilliant woman at Dana Farber to be transparent with my
children. Especially MY children as we are a close family and both my husband and I work in the
health field. Living in Ethiopia we sticthed people up at our house as there was no medical care available during emergencies. So the kids understand their bodies and treatment protocols. I made my oncologist meet both my children, so they could ask questions. Etienne asked more questions than Armelle - Armelle just told the doctor that she does magic on me and the doctor agreed that it is working. I also wanted the oncologists to know who they need to answer to if they make a mistake or a wrong decision.
I got good news this week - the tumor is shrinking!!!! The doctor said I am responding very well to chemo and that I may just be one of those people that have a complete response before surgery. I will have an ultrasound after my last AC on May 23. I then start a new chemo 2 weeks after for 12 cycles. I swear that it is the fasting that is really allowing the chemo to do its thing and also decrease my side effects. I am so grateful for this news and even more appreciative of the support system I have...a truly remarkable group of humans.