The Big Stick Failed

This past Monday morning was the Nerve Block procedure for what my Neurologist, Dr V said was Occipital Neuralgia.

I was extremely anxious beforehand and debated between taking Xanax or Ativan to relax me and make the procedure more bearable. Xanax won. About 45 minutes before we left I took it and then as I was about to walk out the door took another half because NEEDLES IN MY HEAD.


I didn’t see Dr V this visit. The Neurosurgeon, Dr C was doing the Block. He seemed nice enough and explained how it would all go. He told me that I would have the best luck if he did BOTH sides instead of just the right side. (OH MY GOD, WHAT??). I could feel my blood pressure rise and hear my heart beating in my head. 

I didn’t need to lay down. I just had to sit with my back to him, facing the door and bend my head down as if looking as my lap. He began moving my hair and parting it to find the spot he needed. He had me hold my hair for him as he wiped my scalp with alcohol. He hadn’t even hurt me yet but I could feel the tears coming. Then he said the most horrible thing ever…”Wow! This is a big needle!” He wasn’t being funny or trying to bring levity to the situation. He actually meant it. There was no stopping the tears now.

1…2…3…Poke! I cannot even accurately put into words the intense stabbing, stinging pain of that needle. He pushed it in deeper and then he turned it while it was in my head. All the while injecting the numbing medicine into the nerve. I couldn’t stop myself from yelling out in pain. Then he was done. With just the right side. 

Dr C gave me a few minutes to compose myself while he dabbed my head making sure there wasn’t much bleeding. Then the whole process began on the left side. I’m not sure why but the left side hurt even worse.

Thirty minutes from the time I walked into the Office from when I walked out and it was over. My entire head throbbed. My eyes were puffy from crying. I just wanted to go home.

I slept pretty much the rest of the day.

Wednesday morning the migraines started again and I’ve woken up with one every morning since. Pretty disappointing. 

Quite honestly, I’m not sure what I’m going to do. I don’t want to have my meds changed. None of the options were good and they all needed approval from my Oncologist. I should be thankful this is my biggest problem right now.

Next month, I’m off to Sloan for a check-up and then I help move Adam into his dorm!  

Go Yellowjackets!!

Better Late Than Never – The Conference Weekend

This post is a long time in the making. I had every intention of putting my thoughts together after the Living Beyond Breast Cancer Convention. So much happened in that weekend, but then as I got to the airport and was settling in to work on my blog I received a text message to call as soon as I could. News that another beautiful soul had died crushed me. I knew things weren’t good but does that ever really matter? When you do get that kind of news its always awful, horrible suck news. It always makes you cry….ugly cry…the crying that comes from your gut that doesn’t care who see’s you blubbering. I cried because she meant so much to so many. I cried because Twitter would forever be a little less snarky. But most of all I cried because it shouldn’t be this way. A young woman in her early 30’s shouldn’t have died this way, that young. And I cried because as suck as it was, I knew she was reunited with her childhood friend who had also died just months earlier from a Breast Cancer that had metastasized. I miss you Seporah.

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As for the Conference itself, I’m glad I went. I needed to go. Will I go next year? I can’t answer that. Not yet. The traveling to Philly was never ending. I was delayed in total, 6 hours. I could have driven faster. My roommate was so great. For not knowing her the way I did some others that were there, I was pleased. When I mistakenly overslept on Sunday she wasn’t mad at me and instead we ordered room service and took our time getting ready.

There were two speakers that I enjoyed. Dr. Don Dizon and Julie Lanford, Registered Dietitian Nutritionist.

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Dr. Don talked about pain management. He discussed the use of meds, alternative therapies (yoga, acupuncture) and exercise.  He was engaging and had a style of humor that made you forget he was a doctor. He answered many questions, even going a bit beyond the time given. Its safe to say I’d go out of my way to hear him speak again.

Julie surprised me. She spoke about nutrition in a way that was very easy to understand. I’m always concerned that folks like Julie will talk about supplements and vitamins and weird junk to add to our diet. This was not the case. Julie was clear about saying that as long as you do your best to keep to a plant based diet that you would be getting most of what you need by way of vitamins and minerals. Only if you happen to be clinically deficient in something, like I am in Vitamin D, THEN does it make sense to take a supplement. I enjoyed her so much that I follow her on Facebook and Twitter and I share her Facebook posts to my page. What’s also great about Julie is that she is very accessible. She welcomes messages, tweets and posts. She has also commented on my page when I ask for her input. Just love her.

The best and most emotional part of the weekend was an impromptu ‘die in’ that was organized late Saturday night and executed on Sunday morning between speakers. 108 of us gathered and then laid down on the floor to simulate the same number of women that die every day from Breast Cancer. Its one thing to say that statistic but to see it, to actually see 108 woman ‘dead’ on the floor, well, that’s another thing.

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After photos were taken the following eulogy was read:
“Dearly beloved, we are gathered here to say our goodbyes to the 108 Americans who will die of metastatic breast cancer TODAY, and EVERY day, because there is no cure for our disease. They are our friends, our mothers, our daughters, our sisters, and they deserve better. They deserve a cure, and we honor their memory by DEMANDING IT, not someday, but NOW. And now, let’s have a moment of silence for those 108 women and men who are no longer with us.”

All in all it was an experience I will always remember and I’m glad I was a part of it. I was finally able to hug those that have become a big part of my life and I met more women that I am proud to know and call my friends.

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…….stay tuned….more updates to come!