Posted by Sammy

December 31, 2012

 

I’ve been thinking about where to go next with my writing. 3 Weeks ago I was on the plane home. 2 Weeks ago I posted about my new reality. The things that are being born out of Stephanie’s legacy are moving forward, but were in a bit of limbo for a day or so. Its that time between Christmas and New Years when people are travelling and spending those last few days of break and vacation with family and friends. Ive done many heartfelt posts but even I need a break from pouring that much emotion to a page And then it hit me: Les Miserables. Not the whole musical but this spot in the middle. Its no secret that it’s a highly emotional show but if you’ve ever seen it live at about 45 minutes in right when youre on the emotional edge, THEY show up. The Thenardier’s and they bring the house down. Ive seen Master of the House get a standing ovation in the middle of the show. People go nuts. I think its time for the comic relief. Its time to not just connect emotionally (though trust me, were gonna do that another day some more…good juju) but to smile and laugh at our memories and as we move forward to do that with new chapters of our life. So here we go:

 

December 2004:

It was the last “normal” Christmas we would know. I was in my first year at EC which brought its challenges as does the first year at any program. I was ready for break. I was actually a huge fan of snow days at the time. Don’t care for them so much now. Either I love my job more (most likely) or Im old (less likely but still a possibility). Regardless I was ready for break. The news was calling for a winter storm but I kind of ignored it. They didn’t have their Blizzard intro graphics going, they weren’t “live from the salt pile” as a friend of mine watches for, and Jim Cantore from the weather channel wasn’t outside in his blue windbreaker standing in the worst of the storm reporting yet. This storm lacked legitimacy. It was false. And yes, those three things are what I use to decide if a storm is worth paying attention to. Don’t judge me.

 

“Nooooo ILL tell YOU when to go buy the ingredients for French Toast!!!”

 

 

 

So a few days before break I headed out to school. The day began normal enough. Classes finishing up, prepping for break. And in the morning, as the light came up, snowflakes began falling. One of my early classes was the 7^th grade band.

Ill pause here: I really am old. 7^th grade band in 2004 was a favorite class of mine. They kids just seemed so nice. Those nice kids are now in their early 20’s and some have become good friends of mine. I’m gonna take a break and go wallow in my oldness…..

“The kids find it maddening to try to get photos of me during band events. One of them lucked out.”

Just kidding!

One of them, nice, tiny little trumpet player jumps up on a chair and proclaims that the time has come to do the snow dance. You get to a point in the school year that you just roll with it. This was that point. Snow dance away said I. I still blame here for every bit of weather we got after that. Don’t worry. She knows its all her fault.

 

Moving on.

Sure enough the snow began after bit to pick up. By 6^th grade band it was coming down heavily and the announcement came to send the students back to home room…we would be dismissing early. I drove home that day with the snow coming down. Roads were getting slick. I didn’t much care. I knew we’d have a snow day coming.

The next morning the snow was still coming down and we were off school. Now if you knew Steph well or us as a couple, we liked making plans for things like work and such but not so much things like, oh say Christmas shopping. So after lunch we decided to take our snow day time and head to the mall at Fairfield Commons for shopping. It was a 20 minute drive from our apartment. Seemed like a good idea. We got some dinner at Don Pablos and headed in to shop. Fast forward a few hours: im in Bath and Body Works buying some gifts and the girl behind the counter starts talking and our conversation goes like this:

Her: “wow so like youre probably in a hurry.”

Me: “Um, not really…why?”

Her: “Well they are like sending us home early…parts of 675 are shut down.”

Me: “What??? OK Now I am in a hurry”

 

“Lucky for us I knew the best route to avoid Bumble interference.”

 

See this was 2004. There weren’t smart phones in every pocket. I was completely unaware that our snow day weather had gone blizzard on us. I frantically found Steph and we bolted for the car. The 20 minute drive took an hour and a half of fishtailing down the interstate which was now covered with 8 inches of snow. Unplowed. Joy.

 

Needless to say we had no school. The next day we awoke to 16 inches of snow and two snowed in cars. After coffee and playing in the snow…there is photo evidence of this somewhere…we realized we needed to get the cars out somehow. Solution? We would walk to the Big Lots right outside our apartment complex and get shovels since we owned none. Triumphantly we returned with our shovels. Whch had wooden shafts on them. They lasted all of 5 or 6 shovel fulls before breaking. It would be at least a day before we finally got out. I was finishing my Christmas shopping on Christmas Eve on my way to the evening service. Go figure.

 

The snow always seemed out to mess with us. A year later we’d be trying frantically to fly out of Dayton with a  snow storm coming down on us the night before. A year and a few months after that we’d be in a meeting in Blue Ash and snow would hit, causing the 40 minute drive home to become a 4 hour battle of the backroads as every business in Cincinnati dismissed employees in a panic. In 2008 we’d both be on snow days and run out of things to do as an ice storm kept Middletown closed and knocked out power around EC. But dark winter nights always gave way to the sunny days of summer. And summer always brought time at the pool, bike rides, grilling out and trips to the beach with my family. Those things will happen this year. They will be strange. But goofy happy memories like the ones I decided to write down tonight will surface and bring smiles. The wheels are turning on big things. Here is the link again to the donation site for Stephanie’s memorial grant:

http://www.curesarcoma.org/index.php/donation_center/memorials_and_honors_list/stephanie_markham_minge/

 

This is fully tax-deductable and a way to fight back. Its one of many opportunities. Lets send 2012 packing by doubling what is already in the fund. I stand by what I said on December 5 and ask all of you that read this to consider committing to this idea:

 

“Live. Give. Love. Leave a legacy. Impact the world.”

Remember we can be the ones to light up the darkness just like Stephanie always did. What will you do?

Peace

Sammy

Posted by Sammy

Christmas Eve

From Middletown Ohio

 

I’m home. It’s a surreal moment in Life 2.0. I am sitting watching Christmas movies with Sara. Soon we will go to church (Ill be working on this post off and on all night), then come back and wrap presents and have a Christmas movie marathon. I’ve done this before. It was December 24, 2003. 9 Years ago. She was 10. I was 23. It was supposed to be my last Christmas at home because I was getting married in 6 months. Now I am back home for Christmas Eve, just a few weeks off of a funeral that 9 years ago I never thought was conceivable. And yet it is. And the sorrow is great. The loss is deep. And yet, there is hope; there is joy. There is light. Because this is Christmas. It is light and love come to earth. And it is what gives me peace that what Stephanie has done and what I am grasping is not a finality but a transition. That’s my faith and that is my comfort. And it is real. Because this is Christmas.

 

Christmas has always been a special time of year to me. Ever since I was a child it was my favorite time of year. My teachers would call home wondering what was wrong with me in class. That was starting around early November by the way. The sight of the church decorated after Thanksgiving was exciting and joyful. I remember the look of the tree at my grandma Colleen’s house and the smell of the food for lunch she always had set out. I remember the evening family gathering with my cousins and brother and sister and all the wild chaos that is a Minge family Christmas. And I remember Christmas morning. I’d be up before the first light with anticipation of the day. In fact when I was very young my parents and our friends across the street had a pact that the first one up called the other so they had to be up too since their kids were my age and just as excited.

 

In high school my room looked like Christmas threw up and the parade of Christmas concerts was endless. And it was a joy. Even up until my senior year I was up even just a little early.

 

With Stephanie it was just the same. We always went and bought our Christmas tree right after Thanksgiving. We would decorate the house all in one day and then clean up and just look at the tree, usually with silent night playing in the background. We joked about the marathon that was Christmas for us. It started Christmas Eve with pajamas being opened at her parents house and ended at my parents house the next night, with several meals and gift explosions in between. We loved it. There was joy. There was happiness. Because it was Christmas.

 

Even in 2005 we found joy. Stephanie woke me at around 430 am. Her temperature was pushing 102. Neutropenic fever. Her white count had plummeted after her first round of chemo. We were newbies. We were scared. We had to go to the ER. On Christmas. We would remain there until nearly dinner time on Christmas Day. It was the first Christmas we had ever spent away from home. And yet that night, we did presents, watched Christmas specials and sat down to Christmas dinner. We even watched a parade and laughed at A Christmas Story in our ER room. We found joy in the ER. Because it was Christmas.

 

Through every recurrence, chemo round, surgery, transfusion and new challenge, Christmas always came and with it was some time, even just one day to live in a world of joy and a world without cancer. I wrote a post back in 2008 that many said they found moving. It had the same title as this one. I was writing in the silence of my house while Stephanie slept before heading to bed myself. It was a moment of peace and reflection; one where I was truly cherishing having come out of the woods with the first liver tumor and having Stephanie home, but knowing full well what may lie ahead. It was a stark dichotomy knowing we had beaten the monster yet again, but that it may always be lurking under the bed…but there was no knowing.

 

Now we know. The monster was under the bed the whole time.

 

But Christmas came then and so it does now. And there will be joy. There will be light. Because it is Christmas.

 

I know how much joy this time of year gave Stephanie and how much she loved that I loved it so much too. Were I to forsake this joy in the name of sitting in grief and sorrow; were I to give up the lights, the gifts and the laughter and color for tears and sadness it would break her heart as much as any recurrence of cancer. And so I CHOOSE JOY!

 

I could not be more committed or sure about that choice. Tonight’s service cemented that. Family by my side, friends old and new and the pure joy and peace of Silent Night in a sanctuary illuminated by candlelight. Stephanie’s physical absence will always be a void to me, but it is a void she would want filled with love and joy, not tears and sorrow. Our love for each other was special and endured so much. It endures this too and will forever be near to my heart and though tears will flow when they are needed, joy comes too. I leave you with this:

A friend linked this video to me. I watched it last night and while wiping tears away I felt a great comfort. I pray you do to. It tells the story of another man broken by the loss not only of his wife but his son as well and the joy and beauty that eventually broke forth why else? Because it was Christmas

 

 

Live, Give, Love

Sammy

Posted by Sammy

December 21, 2012

From My Apocalypse-Free basement

 

Forward. It’s a simple direction. One foot in front of the other. Move from point A to point B. Every May it’s the first concept we teach the hornline in our marching band. Move forward. It’s a basic, easy idea. At least it was.

 

Forward.

 

Now it is a matter of applying it to life. And suddenly it’s a whole lot more complicated. Because what is behind isn’t really behind. It is with me forever. My life with Stephanie is simply in a new phase now. No matter what direction my life takes from here my 12 years with her have forever shaped who and what I am and will continue to do so, always until my final breath. I will never not be affected by it nor will I full every leave any piece of it behind. It is integrated into me. Woven into my being. Yet there is always a human sensation of leaving something or someone behind; its something we do. We humans for some reason love to gravitate to the negative. But that is a choice. Direction and reaction are a choice.

 

Forward. With grace.

 

The reality is I do not leave any bit of my life behind. I take it with me in a new reality. A new way of being and living. Of Living, Giving and Loving. I have a choice. I am not naïve enough to think I will not be challenged. I am. Every day. Sometimes I will simply need to let my sadness and loss flow. To have a moment of emotional release. I did that today. I stood at the cemetery, looking at Stephanie’s grave where there was ironically just a little more snow than anywhere else. I started crying. Sadness at what was, what could have been. I was full of sadness and anger that today should have been the first day of Christmas break together. We would sit on the couch, watch Christmas movies, drink coffee and go shopping. Not any more. So I wept. And then I had an image of Stephanie: blond hair, winter coat on, that smile that could light up a dark city jumping in happiness, blowing me a kiss and walking away. And I smiled. I truly believe she is celebrating Christmas with our Father. That is my faith and that gives me comfort and peace. So did that image in my mind. She is free. Free of cancer, of pain, of chemo of surgery of all of it. She is in a place of pure eternal joy. If she were here I’d joke that its starting to sound like I got the bum end of the deal. I still have to get up at 5 am. But as many of you told me, I get to pick up where she left off. And it is an honor to do so. A privilege. And I will do my best to carry on in that light.

 

Forward. With Love.

 

So what now? Our old question. One foot in front of the other. And always in love. Love for Steph and all we meant to each other. 12 years of becoming something special. So I carry it forward. And I continue to love; my family, my friends, all those who have cared for and supported me through the last two weeks and who I know will be there beyond. I can show that love in, as I heal, supporting others who are fighting this battle. I can work to raise the money that will kill the monster for good. To be the voice for those who cannot speak for themselves. To fight for those who need an ally in this battle against cancer and it will be a joy to do this in love for my friends and family and of course for Stephanie. What if we all loved a little more every day? What could we accomplish?

 

So what now?

 

WHAT WILL YOU DO?

 

Forward. That’s what.

 

Forward.

 

Live. Give. Love.

 

Everyday. Carry it forward and do it all with as much grace as you can muster.

Here’s a start. We are up to over one thousand dollars in our fund already toward putting a grant forward in Stephanie’s name to fight sarcoma. The foundation will award it to a researcher who is ready to make real strides and innovations. Someone who is moving the fight FORWARD. Whats the goal? Double the amount every week. We CAN DO THIS. Send this link on. Forward it. Share this blog. Send people to me on Facebook. TELL THIS STORY!!! Maybe someone somewhere who just got diagnosed realizes they can fight. Maybe someone who is looking to get some payback on sarcoma sees this as a way. And maybe we tap into the good that is out there. With all that is in the news and our lives, so much tragedy it is too tempting to see all the negative. But there is GOOD and LOVE in this world and we can harness it to fight this disease and put an end to funerals that come to soon. WHAT WILL YOU DO?

 

http://www.curesarcoma.org/index.php/donation_center/memorials_and_honors_list/stephanie_markham_minge/

 

 

Peace and Love,

 

Sammy

Posted by Sammy

10am 12/15/12

From Home

 

As many of you know, I write this post from a new reality. On December 5, 7 years to the day and nearly to the hour of her original diagnosis, Stephanie passed away. She was surrounded by family and love and Christmas music had been playing in the background all night. It was as peaceful an end as we could probably have come to in this battle. In the end she fought this disease right up until the end staying with us until her father and sister arrived. She was still the boss. Stephanie always fought this disease on her terms and took control of an out of control situation. That never changed. We hadn’t posted much on here since August. In fact she was getting a post ready:

 

 

“Posted by Stephanie  6pm  from the house

 

It’s been three months since my last post.  There’s not a day that has gone by that I haven’t thought, “I should really do a post”.  Have things been busy in that time?  Yes.  Have there been days when I didn’t feel well enough to type?  Certainly.  Honestly, though, I just haven’t had the urge or drive to sit down and do it.  Almost like I lost my writing spark for a little while amidst the circumstances.  Then, the more time that passed, the more I knew I had to post about, and it became a seemingly overwhelming task to cover it all.  BUT, my spark has returned, SO much has happened, and it’s time to share it all the best I can.  Let’s start by going back to the followup appointment with Dr. Benjamin that I had in early August.

August checkup: “

 

Stephanie’s reasons for not posting are above. Mine were not too different. One beneficial side effect of going on the Votrient was that she was home, not debilitated and able to do some things for herself. That combined with a wonderful marching band season made things seem almost normal. Steph had some pain here and there and discomfort here and there and some fatigue. But cancer wasn’t in our face. The gravity of our situation wasn’t in our face. It was the elephant in the room. And with as little time for housekeeping during marching season as there is, who has time to notice an elephant? Until November.

 

Steph had been off her Votrient for several weeks. Her platelet count just wouldn’t budge. And her pain was slowly increasing. So we contacted MD Anderson and Dr. B summoned her to Houston. I had an uneasy feeling but no idea it would be the last time this happened. That was when we finally got the news we had feared for nearly 7 years. The cancer was growing, becoming out of control. Her bone marrow was so shot from countless dozens of chemo rounds that she could no longer produce enough platelets. Chemo was not an option. Maybe a Phase I drug IF her platelets ever went up. They never did. We had the best doctor at the worlds best cancer hospital and we had exhausted everything they could do for her. Her cancer simply didn’t play by the rules. It shouldn’t have come back the first time. Good surgery. 95% or greater necrosis. The first liver tumor should have been the end of it. Good surgery and better than 99% necrosis. Yet something allowed it to bend the rules. Something somewhere could go dormant and hide from the chemo. It really was the monster under the bed.

 

After thanksgiving we set out for Reno for a final attempt to do something. As Stephanie said “I know the consequences if I just sit here. I have to do something.” We were 4 treatments in at the alternative clinic in Reno. Her pain had become progressively worse from the appointment in Texas to Thanksgiving. Throughout that month, for the first time I could tell she was sick by looking at her. She never lost the smile, the light, the vitality that defined her, but I knew she was getting very sick. By the first weekend in December she was in considerable pain and her platelets were getting frighteningly low. Still she wanted me to head home for a few days as planned. I was afraid something would happen. “I’m a big girl” she told me “I’ll hang on till you get back.” That was Saturday morning, December 1.

 

2:30 am Tuesday I got the call. I always thought if I got the call to come back early, whether to Houston or wherever it would be her mom or a doctor. It was Steph. Wonder Woman herself was calling me back to be there with her at the end. I got a flight and went to the hospital in Reno. We were able to chat a bit when I got there. I think she was surprised I got there so fast. And there we were, together for her final day. Im not sure how many times we said “I love you” that day. Lots. When she slept I’d talk to her or look at pictures with her mom. I had so much support that day from friends and family to carry me through. We played Christmas music the whole time. It broke up the silence and helped relax us and, I think her too. The last song I remember hearing, softly right at the end was O Holy Night.

 

Today is December 15. 7 years ago we started chemo for the very first time. So full of fear and yet so full of hope. We stood there together. Holding hands at the threshold of hell ready to walk whatever path was before us together. While Steph is no longer physically here, this was a victory. It was a victory of love through every trial imaginable. It was a victory of hope in the face of insurmountable odds. It was a victory of strength and grace over fear and doubt. My sorrow and sadness remind me my wife is not physically here. I cannot call her on the phone, talk with her when I get home or do the things we did every day. That is the challenge of all this. My faith tells me she is at peace with the Lord and that gives me comfort. And I know she is always with me. No matter what direction my life takes from here this remarkable woman, this force of nature is with me. And the impact of her legacy will endure for years beyond all of us. So we shed tears for her as long as we need to. But we remember her smile. Her joy. I leave you today with this final picture. I put it on facebook and I put it here. It was my first picture of her and remains one of my favorite. It makes me tear up for what might have been but rejoice for what was and is. 12 years ago I met a beautiful 21 year old who was, to me, sunshine incarnate. The sun always cuts through the clouds eventually and it will now too. And if we let it and are open, pretty soon her sunshine will light up the darkness once again.

 

 

Live. Give. Love.

For Steph, for us, forever.

 

 

Peace,

Sammy

 

 

 

 

Posted by Sammy

1045 pm from Home.

Yeah, we suck. No posts in what, three months? Yeesh. I blame Steph. For real. Ok not really.So here’s your readers digest version in case you were wondering:

-I’ve been in my usual drop-off-the-face-of-the-planet mode from July to November. Been a great season; Grand Nationals is next week so Ill have oodles of time after that.

-Votrient was pretty handy…problem is the platelets are being highly un cooperative. Just started week 5 for staying off due to blood counts. She’s been called to Houston to see Dr. B ahead of schedule.

Much updating soon to follow.

Posted by Stephanie 2:30pm CST from MD Anderson

Quick post here (since I’m typing it on my phone) to let everyone know I arrived in Houston this morning for restaging scans and an appointment with Dr. Benjamin. I’ll see him tomorrow afternoon for results, and will post once I know something. If you’ve been following this blog, you know this appointment is kind of a biggie. Okay, it’s THE big one–is the chemo pill and my regimen working or am I out of options? *shivers* Not something I’m looking forward to, but it will be good to know, so I can plan my next steps!

In the meantime, enjoy this lovely picture I snapped in the waiting room. I know you are all jealous of my apple flavored barium “smoothie”.

Posted by Stephanie  6pm CST  from the beach house  Longboat Key, FL

According to the original date on the saved draft of this post, I started writing it about seven weeks ago (when I was still in Houston!!).  Between moving from Houston back home, vacations to Las Vegas and Longboat Key, FL (where we are currently), a week of being bed-bound with horrendous pain and a daily regimen that resembles a full time job, I haven’t sat down to finish that post…..until now.  Let’s play ‘highlight roundup’:

1. The prescription/insurance debacle.  Ugh.  A couple of posts ago, I shared that insurance had denied coverage of my oral chemo pill because it was considered off-label usage.  The hospital appealed the decision, and again, it was denied.  I spoke to my insurance case manager, who said that if Dr. Benjamin could provide two medical articles that show ‘promising’ use of the drug specifically with osteosarcomas, they could overturn the decision.  Seeing as how it’s never been tested on bone sarcomas, those articles don’t exist, so we’re out of luck there.  Currently, we’re working to set up a peer-to-peer call between my doctor and the medical director at the insurance company in case he can be swayed based on my extensive medical history and lack of other treatment options.  In the meantime, we have just picked up the second month’s worth of my prescription, and continue to pay out-of-pocket for the medication.

2.  The Cocktails for Contributions event that was happening right after my last post was a HUGE success!  Many thanks to the Synergy Education LP01 leadership team for their hard work and giving hearts.  It was great to see so many familiar faces from all areas of my life, and to meet new people as well.  I was beyond tired by the time the night was over (even with my ‘handlers’ forcing me to stay seated most of the night), but felt so blessed for the support, both financially and emotionally!

3. Speaking of events, there’s one coming up tomorrow, and it’s a biggie!  My high school graduating class (1997 woot!) and the Madison High School alumni at large are throwing a ‘Party With a Purpose’ benefit event to help with my prescription and treatment costs.  Here are the details:

What: Stephanie Markham Minge Benefit Party with a Purpose!
When: Friday, July 20  6:00-11:00pm
Where: Barn n’ Bunk Farm Market—3677 Wayne Madison Rd., Trenton, OH 45067
Cost: $15 presale tickets, $20 at the door
What You Get: Your donation at the door includes a dinner buffet and auction paddle.  There will also be adult beverages available for purchase, a DJ, an insane amount of items to be auctioned off (everything from balloon rides to jewelry, gift baskets and food goodies) and a large crowd having a great time!

The event is kid-friendly, and promises to be a wonderful evening.  I would love to see everyone I know (and those I don’t—I’m nice, I don’t bite) come together for the evening.  There is a public Facebook page (accessible to everyone, even if you don’t have FB) at https://www.facebook.com/StephanieMarkhamMingeBenefitPage with all the details.

4. Vacations!  If there’s anything that Sammy and I have needed lately (well, aside from winning the lottery), it’s been a little downtime away from everything cancer.  In mid-June, we spent a long weekend in Las Vegas with 10 friends of ours from across the country.  It’s an annual tradition that we’ve had for the last several years (though we couldn’t go last summer), and I was thrilled that it worked out for us to keep the plans and reservations that were nearly a year in planning.  I spent much of the time doing my extensive natural remedies regimen (more on that later) and resting in the room, but I did get out for a few hours every day.  We did lots of walking (slowly, and with many breaks for my sad, sad self) and had a wonderful anniversary dinner at Gordon Ramsey Steak in the Paris hotel.  Sammy and I LOVE to watch Gordon Ramsey on TV, and were really excited to eat at one of his restaurants.  The food was amazing!  The only thing that would’ve made it better was if Gordon Ramsey himself came out to the table and screamed F*$% OFF! in his Scottish accent.  :)

Currently, we’re on vacation with Sammy’s family in Longboat Key, FL (near Sarasota).  We arrived last Friday, and have spent the week soaking up sun and enjoying the blue waters of the gulf.  Well, the rest of the family has been soaking up sun—I’ve stayed out of it and am still pasty as ever!  Sammy and I made the two-hour drive on Saturday to spend the day at Disney’s Magic Kingdom in Orlando, and I’m so glad we did.  We’ve been to Disney several times since we’ve been together, but it’s always been with 50 band kids in tow.  This was the first time it was just the two of us, and it was incredibly freeing, and a little weird, all at the same time.  I rented a jazzy scooter (or the park’s version of one, anyway) for the day, since I wasn’t able to do walk for any significant length of time, and that allowed us to bypass most lines, which meant we were able to squeeze in all our favorites (Splash Mountain, woooo!) before we left mid-afternoon.  After Magic Kingdom, we scooted over to Downtown Disney and had dinner, then caught up with some friends who also happened to be in the area that weekend.  A looong day, but totally worth it!  Sadly, Sammy and I are flying home this afternoon.  Boo.  But, the week of sand, good food, and most importantly, good rest has been wonderful.

5. Time for an update on how I’ve been feeling.  For the most part, being on the Pazopanib has been blessedly free of side effects……except for one.  Fatigue.  A lot of it.  I noticed it starting just a few days after beginning on the prescribed half-dose of the medication, and it’s consistently been there ever since.  I was supposed to go up to the full dosage after the two week bloodwork verified my body (and liver, especially) tolerated the pill, but thanks to a major mix-up at my local oncologist’s office, I couldn’t get my hands on those lab results for a whole week, which meant I was a week late bumping up to the full dose.  Once I was on the full 800mg a day, my fatigued increased, and nowadays, it doesn’t take much at all (we’re talking making a smoothie or walking up a few stairs) to do me in.  I’ve adapted my schedule so that I’m getting plenty of rest, but I did have quite the setback a couple of weeks ago.

Sammy and I had friends coming over to the house on a Friday evening, and I (poorly) decided while he was out running errands to do dishes and vacuum the kitchen and dining room floors.  I lugged the vacuum up the stairs and spent the next 20 minutes bent over using the hose extension to get into all the nooks and crannies.  Once I finished and sat down on the couch, I immediately knew I had overdone it.  The left side of my mid-back, which had bothered me off and on the last few weeks (but had improved), was once again hurting.  After being adequately reprimanded by Sammy once he was home, I spent the rest of the day resting before our company arrived.  That night, I opted to sleep down on the couch, since I didn’t want my discomfort and tossing and turning to keep Sammy up.

In the middle of the night, when I woke up to take my chemo, I went to stretch before sitting up, and was jolted by terrible pain on the left front side of my abdomen.  I managed to stand up and slowly make my way up to the bathroom, though I was certain I was going to pass out from the spasming pain.  It was all I could do to not scream (and scare the pants off of a sleeping Sammy), but I made it back downstairs and back to sleep without further incident.  When I woke up the next morning, I was hoping the pain was gone, and that it was some freak incident in the middle of the night, but I wasn’t that lucky.  The pain was still there, and just as intense.  I was having near constant muscle spasms, whether I was laying still or moving, like something was pushing on my diaphragm.  Even taking a breath brought pain, and every spasm radiated in my left shoulder (good ol’ referred pain).  By late morning, I figured all this was due to one of three things. A) I had eaten something that had caused massive inflammation when I was out to dinner with our friends the night before, B) I’d seriously overdone it on the housework and irritated that area, or C) it was the tumor growing and causing major problems.  With the pain and abdominal puffiness, it certainly seemed as though it could be tumor related, and that thought sent my mood plummeting.  However, given the fact that I’d run myself ragged the day before with housework, it seemed a little too coincidental for the two to be completely unrelated.  

I continued to be in agonizing pain through the weekend, and eventually succumbed to taking pain medication to take the edge off, though I didn’t want to put any more stress on my liver than was already there.  As the week progressed, it got slightly better day by day.  The spasming lessened, though I was still completely bed (or couch) bound, except for trips to the bathroom, and reliant on Sammy or mom for everything else.  I continued to worry that this all had to do with my liver tumor when it didn’t get markedly better, but thankfully, as we got down to the couple of days before leaving for Florida, my abdominal pain finally disappeared.  Now, I’m convinced it was indeed just me overdoing things, and my body taking a lot longer to recover from it.  I do still have some abdominal puffiness, and for several weeks now I’ve been able to physically push on it and feel the tumor lurking under the surface, but at least I can move and fend for myself again!  The back pain, well, that’s still there, but I’m working on healing it as quickly as possible.

6. So, Sammy and I have always promised full disclosure on this blog.  The good, the bad, the ugly—we’re going to tell it all.  With that in mind, I feel compelled, as promised, to share the latest addition to my alternative therapy regimen.  I first learned of this back in April, when I was researching the Cellect supplement and Budwig protocols that I’m now doing.  In the beginning, the information I read talked largely about how this other complementary therapy works mainly to flush bile and toxins from the gall bladder, helping it do it’s job more efficiently.  Seeing as how I no longer have a gall bladder (it was removed during my 2008 liver surgery), I dismissed it.  However, articles and research on it kept popping up everywhere I looked—in books, articles and magazines, online. The more I read, the more I discovered the benefits it can have for the liver, helping again to flush out toxins, improve the liver’s ability to metabolize what goes through it (thereby reducing the stress on it), and improve digestion and intestinal health.  
You’re probably wondering at this point what this ‘new’ addition to my natural regimen is, yes?  Well, it involves coffee…..but not in the traditional, “Let me start my morning with a steaming cuppa joe” way.  No, no, it’s nothing that pleasant.  I, my friends, have started doing coffee enemas.  Rest assured, I won’t be sharing the details.  Let’s just suffice it to say that a few years ago, when I imagined what my life would look like now, giving myself enemas twice a day was NOT anywhere in my plans.  But, I have said that I will do whatever it takes, and I wasn’t kidding.  If this can help, then I’m going to do it, and do it vigilantly!  And, while on the subject of my daily “routine”, I’ve decided my next post will outline what a day on my regimen is like.  I’ve had many of you express interest in it, and maybe someone reading this blog could benefit from some of the information.  

Alright, enough of being cooped up indoors.  I’m going out to the screened in patio, which sits right on the beach, and enjoy the last few hours we have here.  I hope to see all you tomorrow night at the benefit event!

-Steph
 

Posted by Stephanie  5pm  from the house!

I mentioned in my last post (the one prior to Sammy’s brilliantly funny entry) that I’d be putting up a lengthy and explanatory post soon.  After all, there is a lot to catch up on.  Well, sorry to say, this isn’t it.    BUT, it is an equally important post, because it contains all the info for a big, exciting, can’t-miss-it event that’s happening tomorrow night.

Many people have stepped up to help since we discovered the cost of my Pazopanib prescription was not going to be covered by insurance.  We’ve had people donate money, do legwork in researching whether we qualify for coverage assistance from the pharmaceutical company, and even organize benefits and fundraisers.  The first of these events is upon us, and it’s being put on by a very special group of friends.  Many of you will remember reading about the workshops I did with Synergy Education, including the leadership program I recently finished.  Well, the Dayton Synergy LP01 Leadership team has put together this shindig, and is generously donating the proceeds to Sammy and myself.  Here’s the details:

What: Cocktails and Contributions!

When: Tuesday, June 12  5:30-8:30pm

Where: A Taste of Wine–90 South Main St., Miamisburg, OH 45342

Cost: $10 at the door

What You Get: Your donation at the door gets you 1 raffle ticket and 1 glass of wine/sangria (additional drink tickets are available for purchase).  There will also be hors d’oeuvres, a live band, raffle and auction items, and a whole lot of people having fun!

An online auction and donation center has also been set up for the event.  Tons of great items are available to bid on, including a 1-year Family Membership to the Greater Dayton YMCA (valued at $856.00!), Reds tickets, a blue ray player, an iPad2, a 3-night cottage rental in Madeira, FL, and more!  Get on there now and get your hands on some great items.  If you aren’t able to attend, you can still participate in the online auction or make a donation via that webpage.  Check everything out here: http://www.32auctions.com/organizations/3930/auctions/4361

Cool, eh?  Wanna know something even cooler?  The group putting on the event arranged for Sammy and I (and Sandra, who’s part of the LP01 Synergy team) to meet up with journalist Jim Bucher, from WDTN Channel 2 and tape a TV segment for the event that will air a couple of times in the next 24 hours.  You can catch it:

-Monday evening (TONIGHT!!) during the 10 o’clock news on Dayton’s CW

-Tuesday (tomorrow) morning at 4:55am on the WDTN Channel 2 morning news

-The segment can also be seen online starting this evening by going to wdtn.com and clicking on the Bucher’s Beat link (under the news tab on the home page)

-Finally, I’ve been asked to come in to the WDTN station tomorrow afternoon and help with another plug for the event on LIVE TV!  Eek!  You can catch the live segment at 12:36pm Tuesday on Channel 2.

I’m so excited that I’m home and can attend tomorrow’s Cocktails and Contributions party!  If you’re in the area, don’t miss it.  For now, I’m off to rest–doing interviews for all my adoring fans (ha!) is quite tiring!  Later gators.

-Steph

Posted by Sammy 2:30pm from Home

Have you ever gotten into a fistfight with a garden hose? Roundhouse kicked a bucket? What about olympic style wrestling with a vine? Or a tree? I like to sum all of this up in a word: Tuesday. Yup. Except the bucket. That was a week or so ago. But you get the picture. Lots of people ask us how we are doing. While really breaking it down from emotion to emotion is complicated I suppose on the surface its less so. It pretty much goes like this:

Theres a tumor. It wants to do bad things to Steph. That makes me angry. I hate it.

There you go. Im angry. But I can’t take it out on the thing that is making me angry and I dont want to be angry to people (well maybe some people) especially not people who care about us. So what to do? Well when the garden hose refuses to wind properly, it has incurred my wrath. What I really am getting at is I find myself being angry over stupid stuff. I have to remind myself that iTunes not loading fast enough is not a global crisis. I keep finding myself going in circles not knowing what to do. Its a strange feeling of being mad, then wanting to go and do something to take my mind off of it but I have no clue what to do, where to go, whether I want company or solitude. Its just funky. Im sure its just a reaction. Processing every thing. Well it a stupid reaction and processing sucks. So does cancer in case I havent driven that nail into the ground yet. But Steph gets home today. Yay! So now I can bother her with my not knowing what to do. Or at the very least we can do some summer things together and enjoy her being home. This of course means I get to make a grocery run. But i have a list.

See when I am home alone, the fridge is, well lets say a little Spartan. Its not to say that I dont eat healthy food or cook. I do. But I tend to go and buy that stuff when i need it. I dont make big grocery runs. So the fridge is used to maintain a steady supply of man-food on hand and other stuff I get as I need it. Well my own personal Mogwai is coming home and just like Gizmo, Steph has rules. Only difference is I can still feed her after midnight. But is important we keep her immune system up and running.

This is what we want her immune system to do.

 

Sadly without proper support this is what we end up with.

So its off to the store with me to buy spinach for Popeye. Itll be nice to be home together. And starting the new drug will be an adventure. (We will discuss my feelings on the insurance/FDA situation another time). It supposed to turn her hair white, so thatll be fun. And in light of a friends Facebook comment that Im still laughing at…If this all works, but the chemo screws with her DNA enough to turn her hair white, Im not sure we can really rule out THIS:

 

Until next time,

Sammy

Posted by Stephanie  11:00pm CST  from a hotel  Little Rock, AR

Lots, I mean LOTS has happened in the last week.  I’ve been working on another of my always-lengthy blog posts for the past couple of days when I’ve had a few minutes of free time here or there, but I’ve come to the end of yet another day, and honestly, I’m just too wiped to finish it out!  But, I wanted to let those of you who might be out of the loop (or not on Facebook) in on the major points, and I’ll get the lengthier post on here as soon as I’m able.

So, here we go, the super-brief Reader’s Digest version:

1. Insurance denied coverage of the Pazopanib, because it’s FDA approved specifically for metastatic soft-tissue sarcomas, which I don’t have.  This makes me want to curse.  A lot.  The hospital is appealing the decision.

2. In the meantime, we have decided to have the prescription filled and pay for it out-of-pocket so that I don’t have to wait any longer to get started on it (it’s already been a week and a half since my appointment with him!). 

3. The kicker?  The medication is approximately $6200 a month.  Yeesh. 

4. After many phone calls and much confusion, I was given the green light to leave Houston.  Mom and I packed up and got on the road this morning, and are stopped in Little Rock for the night.  Eleven hours in the car tomorrow and I’ll be home!

5. An unbelievable number of people are rallying around Sammy and I after last week’s scan results and denial of prescription coverage.  In the last few days, we’ve learned of so many accounts, events and fundraisers being planned by our community of friends, family and supporters.  I’ll have a run down of them all in my next post so that everyone is in the know!

6. I’ve got a new addition to my alternative therapy regimen.  What is it, you ask?  You’ll just have to wait for my long post to find out!  I know, I know, I’m evil for keeping it secret. 

There ya go.  A lot of info, and yet not a lot, all at the same time.  The lengthy post that’s coming will fill in all the blanks, I promise.  Right now, it’s bedtime.  Gotta get my beauty sleep (ha!) so I’m prepared for the rest of our travels!

-Steph