Month: July 2012

  • Many Much Things

    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