LBBC

The Traveling Mask

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Last month, October, was a busy month for me as it was for many advocates. It’s also the month we dread the most. Breast Cancer Awareness Month. It’s filled with pink ribbons as far as the eye can see and they are usually slapped on every type of purchasable product imaginable from produce to pens, clothing to coffee mugs. Most of these items don’t even benefit any legitimate organization and if they do, very little money if any go to fund research, But I digress…..

My plan for the first two weeks was to travel to Memphis to attend an advocacy training called Hear My Voice that is hosted by Living Beyond Breast Cancer and the following week I travel east to Washington D.C for the Stage 4 Stampede & Die-In.  That WAS the plan….until I got sick. Thanks to cancer and my crappy immune system, it’s never JUST a cold anymore and this definitely wasn’t a cold.  I woke up with a fever the week before my trip to Memphis. Chills, body aches. I was not going to panic. I went to my GP and she swabbed me for the flu even though I had gotten my vaccine she wanted to err on the side of caution. Due to my symptoms and my fever she put me on Tamiflu and we waited for the culture to come back. Thankfully, it was negative. I began to feel a bit better as I headed into the weekend ….or so I thought.

By Saturday night I was worse. I was beginning to think my trip may not happen. Everything it settling in my chest and my voice is totally gone. The Wednesday before I’m supposed to leave for Memphis, see my Oncologist for my regular appointment and I’m scared she’s going to tell me I can’t go. I filled her in about the past week, it’s clear I’m still not much better and she tells me based on my vitals I’m dehydrated. So, she decides to hold off my my shots and wants me to hold a week on my Chemo pills so my immune system can bounce back some more and then she sends me to the infusion room to get pumped full of fluids. Boy, did that help!  My Oncologist’s last condition was that I use a mask on my flights to protect myself from airborne germs. I could agree to that. Memphis here I come!

In Memphis, I met Melissa, Melanie and April. Otherwise known at Team Underbelly. Melanie and Melissa were there to represent The Underbelly as a vendor at the Conference and April and I were in the advocacy training. We were all very busy! The whole event was taking place at The Peabody Memphis, which I highly recommend. It’s a beautiful hotel with a Duck theme throughout. They even have a duck parade twice a day!

Unfortunately, the first night was slightly unpleasant. I ended up with viral pink eye. Realizing I forgot my glasses, I had to spend the next 3 days with one contact in my eye and one not. So, now, not only am I sick but I can’t see either. All I can say is that I’m so very thankful for good friends and awesome new friends or else I’m not sure I would have managed as well as I did.

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I had 2 days after Memphis before I had to get back on a plane and head to Washington D.C. Two days of apologizing to Bella for being away and then having to leave again, two days of irrigating my sinuses because I still can’t shake this crud and two days to unpack and re-pack for an entirely different climate. But mostly apologizing to this face and a lot of snuggling.

On Wednesday, October 11th, I donned my mask yet again and my germs and I flew to Washington D.C for the Stage4 Stampede and 3rd Annual Die-In which was going to happen on the 13th – Metastatic Breast Cancer Awareness Day. I was really looking forward to it because I knew I would be seeing friends I hadn’t met in person yet.

Wouldn’t you know, after an afternoon of walking in the woods with April and Melissa, I really started to feel awful. I sent a quick email to my GP and I ended up at an Urgent Care in Virginia getting checked out.  45 minutes later I had a script for Amoxicillin and the promise from the Doc that they would call with the results from my throat culture.  This was week 3 of being sick so I welcomed the prescription and I prayed it would knock out this virus once and for all.

Thursday the 12th was the registration for the Stampede and reception and Friday was the Stampede and Die-in. It was so great to see old friends and even better to meet new ones. The friends that you’ve talked to for months on the phone and on-line and now get to hug. That’s priceless.

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It’s been 6 weeks since I first got sick with what ever this was/is and I’m a lot better but I’m still coughing and a bit fatigued. But I was still able to travel, see my friends and make more memories and in the end that’s all that matters.

Better Late Than Never – The Conference Weekend

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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!

Something To Look Forward To

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In April, at The Lowes Philadelphia Hotel in Philadelphia, PA, an organization called Living Beyond Breast Cancer will be holding their 9th annual convention for those living with Metastatic disease.

I have decided to go and with the help of a travel/lodging grant I can.

Much to my surprise the grants are funded by none other than Susan G Komen.

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I’ll admit, I did have some reservations about requesting a grant from an organization I have huge problems with but then again by accepting it, learning as much as I can and sharing that information with my readers and social media followers, well, that is more important to me. I still feel Komen could and should do more for metastatic women and men and I still feel they view us as pretty pink Breast Cancer’s dirty little secret. But that’s an issue for another day.

I’m as excited as I am apprehensive. This will be the first time I will be in the company of women facing what I have for the last 18 months. I’ve been talking to many via Facebook and/or Twitter and with some, formed a bond. We have talked about how nice it would be to all be in one spot and talk face to face. In April, we will get this chance. While I am over the moon about this, the reality is that our bonds of friendship will grow stronger and while we have no cure for our illness this may be the last time some of us see each other. As much as that scares me, I’d rather have this chance than none at all. All of these women want to be part of bringing metastatic breast cancer to the forefront and help further research efforts. An amazing group.

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I am hoping to get a lot of good information from the seminars I’ve signed up for. There are 2 Saturday and 1 Sunday. I plan on sharing what I learn in future blog posts. So, be sure to look for them at the end of April.

Many of us, including my roommate, are arriving on Friday night. We have casually talked about meeting up possibly for dinner. That should be a lot of fun.

I’ve already started mentally preparing what I’m going to pack. As usual, I will over pack because that’s just what I do. This is only the second time I will be traveling without my husband. This also makes me a bit unsteady but I’m sure once I get there I’ll be OK. I’m most concerned about my connection – and missing it. I can’t walk very fast and I’m terrified I’ll have to navigate an airport I’m unfamiliar with in little time.

I’m currently trying to fight off some kind of bug. Fever today was 100° and the fluid in my lungs continues to rattle around. Hopefully I can keep it at bay but the fluid can’t be a good thing. Tuesday will be 3 weeks I’ve had this lung issue. Time will tell……..