Trying To Catch A Break

I should have listened to my gut and stayed in sunny Florida but you know, Adam and Bella needed me.

Spring break was uneventful (for the most part) until Wednesday the 22nd. I had my monthly Oncology and treatment appointment and was also looking forward to seeing a friend and fellow Stage 4 patient. Our appointments finally lined up on the same day. It was going to be nice to see a friend there for a change.

When I arrived, of course the nurse called me immediately and I didn’t have time to chat with Melissa for very long but we met up again in the infusion room. We eventually had some time to chat before we went our separate ways and that’s when my day went sideways or I should say “fell apart”.

I went to pick up lunch for Adam and as I walked into the restaurant I tripped on the sidewalk and fell HARD onto my right knee. I’m still not sure how I didn’t smash my face into the concrete but I didn’t. I literally couldn’t move for a few minutes because of the incredible pain. Thankfully,  a few very nice people came to my aid. The way my leg/knee looked and felt, the decision was made to call an ambulance and have me checked out. I’ll be honest, smashing my knee sure took the pain from those injections right away. Forgot all about them!

Big props to the Ambulance company and EMT’s that helped me. They were very nice. Unfortunately, the double dose of Fentynal they gave me while enroute to Strong Memorial didn’t touch the pain. I told Neil, the EMT who was stuck in back with me, that I have a high tolerance to narcotic pain meds and it would probably take a horse Tranquilizer to take the edge off. It was adorable that he thought I was joking. (See that bag in the picture? Because I ordered ahead of time I STILL managed to get Adam’s lunch thanks to the Manager at Panera’s!)

I was extremely lucky I didn’t break anything. After x-rays to my knee, hip and femur, it ended up being a very bad bruise to my knee cap. I was sent home with a brace, crutches and muscle relaxers. Not a fashion statement I recommend.

I was glad February was over. I was ready to start fresh with a new month. March had to be better, right??? Eh, not quite…..

Wednesday March 8th, I woke up with a fever of 102°. This was not good. Rule of thumb is that when you are on a medication that affects your white blood cells, any time you run a fever of 100.5° or higher you must call your Oncologist. Most of the time you end up in the ED.

I called. They ordered labs and based on those would make further decisions. At the time I had no other symptoms other than a wicked headache.

Next day, my chest began to burn. Still had that fever. Labs were fine. I was told to “keep in touch”. Um, OK? I debated much of Friday about seeing my GP and ultimately decided against it because I was afraid I would end up in the hospital.

By Monday, I was a wreck. I was weak, my chest felt like all my ribs were broken and I had trouble catching my breath. I saw my GP. She ran some tests and when she called me the next day and told me I tested positive for the flu, I couldn’t believe it.

This is why I have to be very careful about who I’m around, making sure I wash my hands all the time and staying away from people that are sick or getting over being sick. I did have the flu shot but because my immune system is weakened and because of the medications I take comprise it even further, I’m at a high risk for, well, everything.

It’s also going to take me longer to get over this. I’m told I’m going to feel sick and generally crappy for another 2 weeks. It also means I had to stop my chemo meds. I need to give my body a chance to bounce back. That may not sound like a big deal…missing a few pills, but when 21 chemo pills cost $10,950/month and I can’t take 6 of them, that’s a loss of $3,128.58.

If all this wasn’t bad enough, thanks to my craptastic immune system and catching the flu, Adam ended up with it too. At least I was able to get him Tamiflu so he’s managing. But the guilt is there nonetheless.

Advocacy Stampedes in D.C.

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Melissa McAllister, Me & Melanie Childres representing The Underbelly

As a metastatic breast cancer patient and advocate, I try to use my voice in many ways to bring awareness to the fact that metastatic disease is woefully underfunded. I’ve been lucky in that I’ve been able to travel to be with friends and other fierce advocates because, let’s face it, there is power in numbers.

Last year, I traveled to Washington, DC to participate in the 1st Annual Die-In at the United States Capitol with Metup.org. The event was held on October 13th, Metastatic Breast Cancer Awareness Day. It was a symbolic visual event where advocates and metastatic breast cancer patients gathered on the lawn, lay on the ground and ‘died’ just as 113 women die every day of this disease. The Die-In was a bold vision that came from the brilliant mind of Beth Caldwell during a Metastatic Convention in Philadelphia in 2015 in which I was in attendance. You can read about that here.

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This year the event was joined by other significant partners such as:  METAvivor.org, CancerlandLandtv and Refinery29 and was renamed #StageIVStampede. We found out just days before that Oscar winning actress Mira Sorvino would also be attending and supporting her longtime friend, Champagne Joy. The significance of this is unprecedented as no other celebrity or voice of such magnitude has ever lent their voice to the Metastatic Community. The typical voice of a public figure with regard to Breast Cancer is the standard “pink” rhetoric of ‘stay positive and you can beat it’. That was not the message Mira had for lawmakers or the media.  And OMG – we met her and she is AH-mazing!

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Melissa McAllister, Champagne Joy, Susan Rahn, Mira Sorvino & Melanie Childres #Stage4Stampede, Washington D.C 

I attended the event representing The Underbelly.org, the online magazine dedicated to changing the breast cancer narrative I’ve talked about in previous posts, along with my co-editors and magazine founders, Melissa McAllister and Melanie Childres.

The day began at 8:15am. Everyone gathered at the Washington Monument to organize, and then began a peaceful organized march with signs in hand to the west lawn of the Capitol building. During the march I took pictures of those walking, hugged friends we came upon and even did a live feed via Facebook from The Underbelly page! Halfway to the Capitol we were met by a reporter for Refinery29 who asked to speak with us about why we were marching and why the was significant to me, a Metastatic Patient.

Once at the Capital we organized, heard speeches by MET UP co-founder, Beth Caldwell and then we laid down on the grass as a bell tolled 113 times representing the 113 women that die every day. As it was the previous year, it was emotional.

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Melanie Childres, Melissa McAllister & Susan Rahn – Dying for a Cure – Photo By Kipp Burgoyne.

After the last bell rang, as people began getting up, people embraced and the love and the promise of hope filled the air.

Many went on to hear speakers like METAvivor President, Beth Fairchild, METAvivor Co-Founder CJ Corneliussen-James, and Patricia Steeg from National Cancer Institute in the Cannon Building before breaking off into groups to meet with lawmakers. Their purpose was to inform them of the importance of allocating more funds to metastatic research and sharing personal stories is key in being successful.

Any lawmaker would be hard-pressed not to be emotionally moved after hearing personal stories from these Stage 4 advocates as to why research is important to them.

It was a good day seeing old friends and meeting new ones. It’s always a treat to meet in real life, people you interact with online on a daily basis and give them that long, overdue hug.

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We kept our Underbelly readers updated throughout the day with live Facebook updates from various parts of D.C. while we literally logged over 9 miles of walking. I’m willing to bet we helped Starbucks stock just a tiny bit that afternoon.

We ended the day taking pictures of the sun setting over the Capitol, the Washington Monument and the Smithsonian before taking the train back to our car.

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I’m already looking forward to next year’s event but truth be told, I’m secretly hoping it won’t be necessary because our lawmakers heard us on October 13th.

Fireflies, Memories, Ugly Crying and a Bit of Yoga

I’ve been a total slacker with my blog. Life can be a real punk sometimes. 

I had the mammogram and ultrasound but no biopsy. I met with the surgeon and she reviewed everything. Her opinion was that I’m A-Ok. She literally told me to go home and celebrate that I’m still NED. OH, and by the way…no mastectomy for me either. She still feels it’s an unnecessary surgery but that if I have more symptoms to come back immediately and we’ll talk again. 

**Insert Screaming Here**

Honestly, the way I feel right now, I’m not even sure I want to see another Oncologist ever again. I’m very seriously considering just packing up all the ‘cancer baggage’ and tossing it in the river and going about my business.  When the cancer comes back (because metastatic disease always comes back) I’ll just let nature take it’s course and go quietly into the night.  I’m very comfortable with that plan. I’m at peace with it.

So, last week I took a self imposed ‘time out’ with Facebook and deactivated my account. Boy was that dumb. My blog page is now unseeable. Welcome to my wonderful luck. I’ll figure it out but it sure is frustrating. If you happen to be a follower of my blog page on Facebook, hang with me. I’ll be back.

This past Friday I boarded the Amtrax for NYC. My soul sister, Melissa McAllister, we’re meeting in the Big Apple to attend a workshop hosted by Jennifer Pastiloff.  ‘Being Human, You Are Enough’.  It was guaranteed to be an experience like no other. And it was.

We stayed in the area of Central Park West, within walking distance of Columbus Circle. It was a fantastic location. I about cried when i saw fireflies in Central Park. Our hotel on the other hand, was…well…the outside terrace where you could sit and chill in the morning and afternoon and then turned into a chic bar in the evening was nice. The rooms left a lot to be desired. The hallway was creepy. Very Stephen King.

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The bathroom was made for toddlers and the sleeping area was barely big enough for the bed we both crashed in. Unfortunately, double beds would have cost an extra $85/night. Thanks Priceline. Asshole.

Saturday was our workshop. Melissa and I were both so excited.  It was very surreal. It was held at Pure Yoga. Very cool place. We arrived early and got a place up front. I mean this was like seeing your favorite artist in concert. Being up front was mandatory.

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We were told to bring a journal to write in. Melissa was kind enough to bring them for us. We brought our phones in with us because, well, selfies of course. Duh. When Jenn finally walked in I think I was holding my breath. She has this energy about her. It’s something you can almost see floating around her.

As Jennifer began talking I started freaking out. This was going to be way out of my comfort zone. We began by writing something we wished for in or for our life on a sticky note and then we posted the note on the wall in front of us. Then we were told to grab a note off the wall. Any note..except not ours. The note we took we would look at each day and put positive energy out into the universe for the person that note belonged to.  That’s cool. Someone would be thinking about my hope and hoping the same for me.

We had many exercises that involved writing in our journal and then reading out loud what we wrote so others could bare witness.  It was difficult for us to read what was written. Many of us cried when we began reading. The coolest part was when Jenn added music. It was loud, in your face music that raised the energy level to highs unknown.

I didn’t share my writings until the end. We were to finish the sentence: “I (full name) award myself a medal for….”  It could be one thing or as many as we could fit in. I was beyond uncomfortable knowing I’d have to read what I wrote out loud. I was pretty happy with the thought that I was going to squeek by. When it was my turn I thought I could do it without tears. Nope. Not even close. It all bubbled up to the surface and by the time I finished,  I had the snot bubbles like Jenn promised we’d have. It was ugly crying in all its embarrassing glory. And I owned it. I received a nice round of loud applause.

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Sunday consisted of sightseeing around the West Village, eating a slice with cold hard cider and tattoos to remember this weekend and life changing experience.

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We finished the evening with a delicious dinner at the Red Cork. We had good wine, shared small plates and had great conversation.

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I leave you with what I shared at the workshop:

“I Susan Rahn, give myself a medal for being a fucking outstanding Mother and raising an even more amazing Son. I also give myself a medal for not allowing my cancer to swallow me whole and for using my voice and bitchiness to educate others; for standing my ground when others try to smack me down and shut me up. I also give myself a medal for just being myself”

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Acupuncture For The Beginner

My Oncologist suggested I try acupuncture to help with the side effects of the Exemestane I’ve been taking for the last 10 months as well as nerve damage from radiation I had to my ribs. To be honest, I wasn’t happy at the prospect of more needles but these are not supposed to hurt and I am SO ready to feel some relief that I figured it couldn’t make things worse…. Right??

So, I had my first acupuncture treatment last week and you wouldn’t believe how it started. 

Ready??

The woman (thank God she waa female because I would have walked out otherwise – you’ll see why shortly). I was told to disrobe but to leave my bra and underwear on and to lay down on the table. She would step out and come back when I was ready. She takes my pulse on both arms and says my Chi is totally fucked up and slow. Well we can’t have this so I need to get unblocked or else none of what she has planned will work. To do this she needs to put 4 needled is 4 very specific spots because they form a kind of circle. So she begins to explain that one goes in my chin…the other in my upper gum area above my teeth…another goes in my tail bone and the last one goes in my …..(sit down for this).. my perineum (you know, that space we have between our vagina and our anus). Now these needles don’t stay there, she just pokes them in and yanks them out. I can still feel that one in my ‘special spot’ and I left my appointment a week ago.

She had me sit up and she mapped out the placement of about a dozen needles she put up and down my back. These she left in place for 10 minutes. Finally she had me lay back down and she put what looked like little piles of ash on my chest and lit them on FIRE…yes, I said fire. I was instructed to let her know when I felt the heat and she would scoop the ash off. At the end she checked both pulses again. She said I was good to go and I left.

After I left I began to doubt the good this will do because how could putting needles near my lady parts and burning ash on me help??? Well, I did the thing I do best and I Googled. I found a message board on an acupuncture site and posted my concern. It took a while but I did get some replies. I was told that this was very common with someone who practices The Five Elements Acupuncture and that those four needles are usually done in the first or second session. The ash is called Moxa and its done before the insertion of needles on certain points. It was suggested that I give it 3-4 treatments before I decide to quit.

I’m going to give her the benefit of the doubt and continue going but there is NO way she’s doing those 4 points again.

Moral of the story….if you go to an acupuncturist make sure you ask where she might put those fucking needles before you find yourself in that familiar gynecological position with a strange woman’s hand up your cooch!!

I’ll let y’all know how this drama ends and if it gives me any relief.

Questions go Unanswered

Well, I did the blood work..I had the PET scan and we met with my Oncologist. I had been preparing to hear not so great news. I was not prepared to hear what I did.

The PET Scan didn’t show any progression. It did show inflammation where my rib tumor is to indicate trauma or recent injury. OK…so I’m not crazy and the pain I’ve been having isn’t in my head after all. To rule out a fracture my Dr had me do xrays on the rib. Because the rib is compromised a fracture would make sense.

Then we talked about the blood work. I told her about the one marker Antigen 27.19 and how it’s been steadily on the rise and I’m now over the high end. She explained that in some cases blood work is ahead of PET Scans. So what she said was this PET could be a false negative. I asked about clinical trials and if I might be eligible for one. I explained that I want to get ahead of this and make sure that this cancer doesn’t get to an organ. I signed paperwork for the hospital to do more testing on the biopsy slides to see if they can get more information about my cancer and place me in the best clinical trials. If I can’t do a clinical trial qwe will then discuss tweaking my meds or possibly even chemo.

I’m meeting with my local oncologist this week armed with my PET results and blood work. Even though she isn’t my primary Dr I do value her opinion and input. She knows I want to get ahead of the beast before it gets ahead of me. I’ll have to be patient and wait a few more months before I will feel more comfortable in my treatment plan.

I’m going to stay positive and keep focused on being bigger than this cancer.

My Mental Preparation

Ever since returning from vacation almost 2 weeks ago I have been mentally preparing myself for this coming Friday. Scan day. My 6 month PET/CT.

My first follow up this past February was better than I dreamed: NED. Only 6 short months of hormone treatment and I had no active cancer. The celebration  was short lived…in April my blood work started coming back with numbers headed on the upswing. Creeping ever so slowly but definitely going up. I have been told not to worry…not to panic…could mean nothing.  Tell a cancer patient not to worry?  That’s funny.  When you have (or had) cancer worrying is second nature.  Also I have been experiencing more pain than usual…been tired…just not feeling right.

So…try as I might to stay positive…and I am, I am also mentally preparing myself to hear those words again. That the cancer is back. That it found a way around the exemestane and a new treatment plan will be necessary.  This is not me being negative. This is self preservation on my part. I can’t be blind sided by bad news. I have my son to think about. He won’t be in the room when we meet with the Dr but he is coming on this trip and I can’t be a puddle of tears when its over. I have to be brave and show him I can and will fight. 

I’m jumping to a host of conclusions. Will I have IV chemo? Will I have to get a port?  Will I lose my hair?  What will I look like bald?  How sick will I get?  How much worse will I feel?  How long will this treatment last? Will there be a clinical trial?  None of these questions will be answered before the scan. Some won’t be answered until much later. But I need to think about these things and mentally prepare myself for my possible future. Lord knows if not now it will be later. That’s how stage 4 works after all.  I’m on a carousel that goes round and round….never stopping. Only sometimes it slows down and sometimes it speeds up. Right now I feel it speeding up.  All I can do is get prepared while I pray for positive news.

Symptoms or Stress

Since April I’ve been having new pain and my numbers have slowly been on the rise. Although my local Oncologist said not to worry my primary Oncologist at Memorial Sloan Kettering suggested another PET/CT. Its scheduled for July 25th.

I’ve noticed other little things too.  I forget words, I lose track of my thoughts and I’ve been getting more headaches/migraines. I’ve also been more fatigued than usual. I’m keeping track of when and how often these things happen. Are they new symptoms? Or is this stress related. 

Usually when I’m stressed I eat or clean so although all of this could be related to stress I do have my doubt’s. Unfortunately, people like me with Stage 4 disease can’t help but automatically think the worst and jump to the conclusion that new pains and other unusual things are symptoms of something more ominous.

So, until my next scan I will try not to dwell on what could be. I will enjoy this last week of vacation in Miami and happily celebrate my Son’s 15th birthday when we return. I will worry about the results when I get them. (Yeah right). I need to remember that life is short and I need to spend time in the present making the most of every little bit of time I get.