On 09 December 2013 I had two appointments: one with a woman at Piper Breast Center, that works for the Penny George Institute, who helps mix Western and Eastern medical practices. She really encouraged acupuncture for chemo side affects, but I had acupuncture, may be 12 years ago, for my monthly migraines, and the ten or fifteen sessions did not alleviate or improve my migraines. I may try one session of acupuncture, I am not sure right now.

The Neulasta shot is what I believe is causing my migraines. I am rendered out of it and in pain for four-five days after the shot. My nausea has been manageable. My fatigue is awful. I tucker out easily. I also have not been walking because the weather is so cold. But I’m thinking we should may be go to a mall and walk so the joint pain (another side affect of the Neulasta) is lessened. I did yoga today at home. I felt tuckered out afterward, but good, and the joint pain was alleviated. The breast and under arm pain is back, so I’ve had to start taking Oxy again. I am still taking the Methadone. However, the physical signs of IBC are mostly gone from my left breast. I appear to be responding to chemo very well.

I’ve been really sad for the past ten days. In addition to crying jags I did too much yesterday and I’m paying for it today with nausea, vomiting, a headache and the ever-present fatigue. Mimi had the same symptoms yesterday, so perhaps I caught something from her.  

If the doctors had their way they’d have me seeing a different specialist every day. Get the port. Go to acupuncture. See Mary at Penny George, because Nancy at Penny George has different recommendations. Go to *our* gynecologist, even though you have one you like. Attend the makeup, scarf-tying workshop. See the Cancer Psychiatrist at Piper. Attend a Support Group. Talk to a rabbi. Call this place for Zack, even though he’s not interested. 

May be other breast cancer patients want people to run their lives, but I want to run my own life. I am all ready over-whelmed with the appointments I do have, and what is happening to me right now is my version of hell. 

As we are flung towards the Christmas holiday, I’ve had confrontations about the whole standard of care protocols. Doctor’s are gods. God’s don’t negotiate, they prescribe. When it comes to some drugs, they will admit that everyone is different, but when it comes to philosophy or tolerance for invasive procedures they lose the concept of individuality. Ativan doesn’t work for me. At all. I have resorted to lying to Bloom’s office because they kept insisting I am WRONG and that Ativan should make me sleepy, take away my nausea, and other benefits. It doesn’t do a bloody thing. But since no one believes me I have started saying, “Oh yes, Ativan helped me with nausea that last round of chemo.” It’s a win-win as they feel vindicated and I have them off my back.

It was great to talk to Celia last week and know that I wasn’t alone in how I felt about Nancy, the awful nurse from Penny George; as neither of us liked her.

I’m trying to understand why people who say they believe in G-d, Jesus and Heaven are scared to die. Sonja is the only one who has had a very long conversation with me, years ago, about my beliefs on death. She has always said that I am blessed to not be scared. But just because I am OK with dying doesn’t mean I don’t need to try to explain all this better to Zack so he isn’t a mess if I do die in 2014. Or 2015. 

The bills are finally coming in and I owe around $500 for all the diagnosis-related bills. Insurance has covered an amazing amount of procedures. In order to pay the bills, I have taken a part-time English teaching position for online coursework. To a certain extent I can adjust my availability for when I anticipate being more sick, which seems like such a luxury right now. 

My car broke on Saturday and I had to cancel all appointments for the week because I certainly wasn’t going to take the l’autobus. It’s been a relief! Four days of no appointments now feels like I’m on holiday! The pain has become worse, and I’m back on Oxy and still taking the Methadone. At chemo next time I will be asking to forgo the Neulasta shot so I don’t have another four-five day migraine. I could only be so lucky. 

2 Comments

  1. You don’t know me but I am subscribed to your Facebook upeatds and am one of your biggest fans. You are an incredible human (as is your hubby and children/family) and I feel a real kinship to you. I have read everything you have ever written and watched every video and have been following your journey and you are so incredibly inspiring and strong! You are so brave and lovely and I know you can beat this! I too am a full time yoga teacher (only here in Vancouver Canada) and although I am here, and you are there, and we have never met, please know that there are so many of us sending virtual hugs and healing vibes your way each day. I am so aware that this could happen to any of us at anytime regardless of our lifestyle etc. Life is so very uncertain. Please know that you are a hero to me (and many others) and that we are with you. When you feel alone when the hubby is at work and the kids are at school please know that you are never really alone. And you can and WILL beat this. You are super strong and we are all holding you in our hearts. Namaste xo

    • Krautgrrl

      I am so flattered. That is so kind. Thank you! My blogs will be exploding in 2016. Check out michelebakes.co.uk and missyphillips.com for more posts.

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