Posted by Stephanie  12pm CST  from the apartment

I started writing this blog entry two nights ago, spending over two hours on the lengthy post.  Just before I finished it, my computer battery died, and when I plugged it into the charger and brought the page back up, it was gone.  All of it, GONE.  Nooooo!!!!  So, here I am, recreating that post (and hoping I remember all I was going to say!).

The past week has been an eventful one.  Uncooperative counts, a trip to the ER for an unexplainable fever, and a blood transfusion led to a delay in our trip to Ohio and an all-too-brief three day visit at home.  However, all those events are not the ones I want to discuss tonight.  Instead, there are bigger issues at hand—namely, the scans and appointment I had with Dr. Benjamin Tuesday.

The story actually begins on Monday.  Since I was only going to have a couple of days at home, mom insisted that she drive the car back and I fly so that I could have as much time at home as possible.  I had only a small duffel bag and my laptop to take with me, but those two items were heavy enough that I had some difficulty lugging them through the airport.  I started with pain and tenderness across my abdomen, right under my rib cage, sometime early in the afternoon.  Of course, my mind immediately went to the worst place possible (‘My liver tumor has gotten so large it’s pushing against something and causing pain!’), but I banished that thought from my mind and considered other options.  Did dragging those two bags on and off my flights and through the airport cause me to pull a muscle?  Did I eat something and inflame or irritate something?  The pain continued into the evening, and was joined by right flank pain, which is usually indicative of a kidney stone.  When I wasn’t cursing my luck (‘Really, all of this now?!’), I was parked on the couch in the hopes that rest would resolve the situation.

I woke on Tuesday morning feeling about the same, and mom and I headed off to the hospital for my bloodwork, chest x-ray, and series of chest, abdominal and pelvic CT scans.  Nothing like starting your day with a couple bottles of apple flavored barium and a tube up your rear.  Good times.  Anyway, after the scans we headed to the apartment for a couple of hours, then it was back to the hospital for my appointment at the Sarcoma Center.

Once Mara, my nurse, escorted us back to a room, a doctor doing her fellowship (a “fellow”, as they’re called) came in to do an assessment.  I had never met this particular fellow before, so we spent a few minutes chatting about my recent history, after which she surprised me by saying that she likes to go over scan results with patients.  I usually don’t hear anything about scans until Dr. Benjamin is present, so I was both excited and anxious to get answers a few minutes early.  The fellow wasted no time in getting straight to the point, saying, “Unfortunately, the spots in your lungs and liver have all grown…..but only by a centimeter”.  Now, obviously this is not the information we wanted to hear.  I would’ve preferred something along the lines of “We can’t believe how much the tumors have shrunk!”.  However, if I couldn’t get that news, than I figured growth of just a centimeter was okay information to get.  Given the tumor appeared out of nowhere and grew to nearly 10 centimeters in two months, an additional centimeter in another two months doesn’t seem so bad, right?  When we asked her if that kind of growth leads them to believe the treatment isn’t working, the fellow said, “I haven’t spoken with Dr. Benjamin at length, but I think he’s looking to switch your treatment to an oral chemotherapy.”  Without any further discussion, she proceeded with a physical exam.  I told her about my abdominal pain, and while she commented that she could feel something hard just below the surface when she palpated that area, she didn’t think that the small amount of growth or placement of the tumor would account for my pain.  She left the room to retrieve Dr. B, and mom and I both breathed a sigh of relief.  This seemed manageable.  I called Sammy (who wanted to be on the phone during the appointment) and shared the news with him while we waited for the doctor.

When Dr. Benjamin came in, he gave me a trademark Dr. B hug, then sat down, stared at me, and just sighed.  He proceeded to share with us almost the same exact news as the fellow had, but his take on it was, well, different.  And not in a good way.  In fact, he said, “I have to be honest.  This is a really bad situation”.  To start with, he felt the radiologist’s read on the scan wasn’t totally accurate, and that the growth of the liver tumor was more like two centimeters in every direction.  To him, growth like that, while slightly slower than the initial breakneck speed, still signifies major progression.  In his words, “If your liver tumor was growing at supersonic speed before, now it’s just growing at regular jet plane speed.  Your cancer is still growing out of control, and laughing in the face of everything that we’re trying to do to it”.  He went on to say that in the past, he’s always had a plan for me, and I’ve usually responded beautifully.  Even when a treatment regiment didn’t work, there was always another plan to fall back on.  “This time,” he said, “I have no plan.  I have an idea, but I have no idea if it’s going to do anything at all.”

Dr. Benjamin’s ‘idea’, our last ditch effort/hail mary pass for conventional treatment, is to try an oral chemotherapy pill called Pazopanib (or Votrient).  It’s primarily used for kidney cancer, but has very recently been approved for use with metastatic soft tissue sarcomas.  Now, I don’t have a variety of soft tissue sarcoma, I have an osteosarcoma.  Dr. B wasn’t sure Pazopanib had ever been tested on osteos, but hey, it’s not like we’ve got a lot of other options here! 

The regiment is very straightforward.  I’ll take four pills, once a day, though for the first two weeks, I’ll only take a half dose.  That’s to make sure my body (and liver especially) can handle it, and that I don’t have an adverse reaction.  I’ll get a full lab workup, including liver function tests, after two weeks, and if all looks good, I can increase to the full dosage.  Once you’re on Pazopanib, you stay on it, all the time.  No taking it for a week, then off for two; it’s a constant thing.  Side effects should be much tamer than the Adriamycin/Cisplatin combo I was just on (along with most of the other regiments I’ve tried), with fatigue being the major one.  There’s also a chance for nausea, skin sloughing (sounds lovely, right?), and some electrolyte imbalance, along with other less likely issues such as hyper (and hypo) glycemia (yes, somehow both could be a problem.  Go figure.).  Pazopanib will not depress my immune system as seriously as many chemo regiments, so I shouldn’t have to face a boatload of transfusions or daily labs.  In fact, after my initial bloodwork panel at two weeks, I’ll continue to only need labs twice a month.  Oh, and there is one more little thing.  My hair will grow back, but this chemo is going to turn it white.  White!  That’s one color of the rainbow I haven’t had yet!  And I’ve been told not to dye it while on treatment.  When mom and I heard that, I looked at her and said, “There’s just something not right about me having white hair before you do!”.

Here’s the best news about this regiment.  It can be done at home!!  Yes!  We have to wait for insurance approval, since we’re trying to use this for a non-soft tissue sarcoma, but Dr. Benjamin was optimistic that it would to through.  Once we have that, mom and I will just have to pack up and clean the apartment, run a few errands, and within a couple of days, we’ll be headed home.  I’ll admit, I always have some anxiety when I’m away from MD Anderson during treatment, but Dr. B felt I’d do fine on this from home.  He wants to see me again in two months to repeat scans and reevaluate. 

Oh, and as for the pain I’m experiencing?  Dr. Benjamin is certain that it IS in fact related to my tumor (that poor fellow was 0 for 2 in being right with her info that day).  That means that the pain will more than likely stick around (and so far, two days later, it has).  He prescribed pain medication, but I don’t plan to take it unless I absolutely have to.  I don’t like the thought of being on heavy-duty pain meds all the time, especially when it’s my poor liver that would have to metabolize them.  It’s under enough duress, thank you very much.

Now, by this time in the appointment, my brain was on overload from all this information.  The news about continued disease progression and trying a brand new treatment was more than enough for me to digest, and I figured that was where we’d wrap things up.  I imagine Sammy was feeling the same way, for he hadn’t say more than a couple of words on speakerphone the entire time.  But, I was sorely mistaken, for when I asked Dr. Benny if there was anything else, after a long pause, he dropped this on me.  “You’re not anywhere near there yet, but I’m a big believer in being prepared.”  Oh boy.  “This tumor could very well kill you, and if that time comes, you need to just let that happen.  Don’t let yourself be put on a life support machine just to extend your life in that condition for a couple of months.  If we were dealing with something that could be fixed while you hung on, then it would be a different story, but at that point, it won’t be a reversible situation, and you just need to let yourself go.”  BAM!  And there it was.  Certainly wasn’t expecting to hear that.  I’m pretty sure I just shut down, nodded my head and said “Okay”.  I didn’t cry (until later), and I didn’t hear a peep from Sammy on the phone, because really, what can you say to that?

Once Dr. Benjamin and the team left the room, I took a deep breath and said, “Well, that sucks”.  Sammy and mom both heartily agreed, and after another couple of minutes, Sammy had to hop off the phone to finish up at school (mini band camp is going on) and head home.  Mom and I had a good cry, then waited for Mara to come back in with a copy of my labs, information about Pazopanib, and consent forms to sign for the new treatment regiment.  We also set up appointments for an EKG, which is routine before starting this chemo, and a blood transfusion and I.V. phosphorus infusion.  My hemoglobin continues to drop slowly, and Dr. B thought the boost would not only give me more energy, but would also allow my heart to do it’s job a little easier with more oxygen in my system.

So there ya go.  My cancer is still growing and we’re hanging our hats on an unproven treatment, along with the nutrition and alternative treatments I continue to follow.  Not surprisingly, I’m TERRIFIED.  But, I’m also committed as much as ever to fighting for my life.  This warrior will never give up!  Pazopanib, though not meant for osteosarcomas, may turn out to be just what my body needs.  After all, I’ve responded to unconventional chemo meds before.  Plus, I have faith that the other things I’m doing are making a difference.  Once I’m home, I’ll continue to look for other things I can do to help my body fight for itself.

I had my EKG and transfusion/infusion yesterday (nine hours at the hospital, woohoo), and now mom and I play the waiting game.  I’ve called to check on insurance approval, but there’s no news yet.  In the meantime, mom and I are splurging on one more lunch out at a favorite place here in town, and then we’ll start the packing and cleaning process.

That’s it for now.  This post is lengthy enough, so I’ll save some of the other thoughts and emotions I’m experiencing for another post in the near future.  Thank you to those of you who have already texted, e-mailed or called to offer your support after this latest news.  Sammy and I never cease to be amazed by it.  Have a great afternoon.

-Steph

Posted by Stephanie  10pm CST  from the apartment

Well, again I was shocked to look at the date of my last post and realize it was 19 days ago.  Man, I have NOT been good about this whole ‘posting often’ thing.  I’d love to say that it’s because I’ve been so busy, but this time, that’s not the truth.  I’ve just had a case of ‘not doing much thanks to chemo but laying around’ for at least a week or so here.

So, anyway, let’s back up to the first weekend in May, which is what I was gearing up for in my last post.  That was the weekend that the rest of my Synergy leadership team was flying in for us to participate in the culminating weekend of our 3-month journey together.  It was supposed to be done in NYC, but when we learned I wouldn’t be able to travel there for the event, the group rallied quickly and made plans to travel down here instead.  Pretty incredible, right?  Well, it’s an understatement to say that they’re pretty incredible people!  In total, there were 15 people who traveled from New York, Ohio, Montana and California to converge in Houston for the weekend, and what a weekend it was.  Thought-provoking, empowering, emotional, and designed to propel us forward to do great things with our lives.  I left there with so many ideas and goals, and more importantly, a set of friends that I know I will have forever.  Amazing.

On Sunday the 6^th, the day the workshop ended, I admitted to the hospital for chemo round number two.  It was evening by the time my room was ready, and after getting the admission paperwork done and all the fluids and pre-medications out of the way, it was into the wee hours of Monday morning before my chemo infusion started.  It was another fairly short stay in the hospital (I discharged on Wednesday afternoon), and thankfully it was also fairly quiet.  I, of course, felt crummy once the chemo was in my system.  Fatigue, not much of an appetite, nausea—but I didn’t vomit, so I consider it a success.  I did wind up needing a couple units of blood when my hemoglobin tanked.  Given that it wasn’t that high to begin with this round, I can’t say I’m surprised. My friends Meredith and Nicole (who were down for the leadership weekend) also stayed several extra days to keep me company in the hospital, along with Sammy who was in for nearly a week himself.  Having them all around kept me sane and helped to pass the time quickly.

Meredith, Nicole, and Sammy headed home on Wednesday, the day I left the hospital (mom had returned the evening before), and I got settled back into the apartment.  My counts starting dropping quickly, and within three days I was neutropenic (super low white count) and in need of my first platelet transfusion.  Over the course of the last week, my immune system continued to bottom out, with my white count stagnant at 0.3 for several days, my hemoglobin dropping a few tenths of a point at a time, and my platelets predictably falling, and falling…..and falling.  I had another platelet transfusion last Wednesday for a boost, and finally, starting two days ago, my platelet descent really slowed down, came to a standstill, and today, went up a whopping one, from 15 to 16.

My hemoglobin remains insanely low at 7.6 (normal range starts at 14), and it’s been dropping a tenth of a point at a time.  I’m hoping it turns around and heads up (like my white count did several days ago—it’s rockin’) so that I can stop feeling so fatigued from the lack of oxygen in my blood!

As for side effects since I left the hospital, this second round has been drastically different than the first.  In my first round, I suffered from pounding headaches almost daily, a fever that hovered from 99-101 for days, and teeth, gum and throat pain that was bad enough to keep me up at night.  This time?  I’ve had some nausea (and a little vomiting), but only one or two headaches, my temperature never got above 99.5, and almost no teeth, gum and throat issues.  What could possibly explain this?  While I can’t say for sure, I’m betting it is largely due to the nutrition and alternative treatments I’ve been doing.  It’s the only thing that’s been different.  The fact that I now have a vitamix blender and am drinking three whole fruit and vegetable smoothies from scratch (with a specially ordered powder supplement, Cellect, that’s supposed to fill in nutritional gaps and set all my cells back to their base, healthy status), eating super clean and completely fresh, and doing the cottage cheese/flaxseed combination twice a day (known as the Budwig protocol), is, I believe, the reason why I haven’t suffered as much this time around.  Now, let’s pray that it’s making a difference in healing my body of this cancer, and in combination with the chemotherapy, shrinking those tumors!

Aside from all the medical updates, there hasn’t been much going on.  I’ve been trapped in the apartment (except for my daily bloodwork trips to the hospital) until just a few days ago, but we have yet to really do much outside the apartment since I’ve been pretty fatigued.  I’ve been reading a lot, and napping, but haven’t spent much time on the computer (hence the lack of posting).  Oh, and last night we ordered pizza and wings.  I’ve been so diligent about following my nutrition plan for weeks now, so I thought a little splurge was deserved.  Today, it’s right back to the grind!

It’s been my plan since we learned of my recurrence at the beginning of April to get home for a visit after the second round and before my restaging scans on May 29^th.  With my recent bloodwork results, I had actually hoped that both my platelets and hemoglobin would’ve dropped enough to warrant a transfusion.  That way I could’ve gotten a nice bump that would’ve A) helped me feel better, and B) gotten me a couple of days of cushion to travel home.  Unfortunately, it didn’t work that way, with everything creeping up, down or staying stagnant.  Our goal is to leave tomorrow and start the two-day drive home (my platelets are too low to fly), but it all depends on tomorrow’s lab results.  If my hemoglobin stays put or starts to rise, AND my platelets also continue to trend up for a second day in a row, we’ll be set.  If either number falls, I’ll have to stay put for a transfusion tomorrow, and that’ll postpone things by a day.  I want to get home ASAP, because I’ll only have a few days before we’ll have to turn around and drive back.  I have a feeling that my time at home, no matter how long, will be jam packed!

I guess that’s about it for the time being.  Right here, right now, I’m making the commitment to post more often, especially since I’ve had people concerned for my safety with all the time in between updates.  Have a great night and a good start to the week!  xoxo

-Steph

Posted by Stephanie  11pm  from the apartment  Houston, TX

Wow.  A post from Sammy and I both.  Aren’t you all lucky?!

So, I met with Dr. Benjamin last Thursday, which is traditional before starting another round.  That way the doctor and I get a chance to discuss how the round went, if I’m ready for another, etc.  Admittedly, I was nervous going in to the appointment.  Week before last, when my immune system was still bottomed out and I was undergoing my third platelet transfusion, I seriously wondered if my counts were going to bounce back.  I knew eventually everything would head in the right direction, and it did, but I truly thought this time we had possibly pushed my immune system too far, that it was kaput, and that doing another round might not be a risk Dr. B would be willing to take.  During previous bouts on chemo, I sometimes waited four, five, even six weeks between rounds because my ANC (absolute neutrophil count—measures when my white count has truly recovered) or platelets were slow to recover, but this time was a little different.  Those previous times, my counts starting heading up on their own without much intervention, but would become stagnant or double dip back down a second time, causing the delay.  This time, it seemed my platelets just couldn’t turn around and head up.  For two solid weeks they kept plummeting, despite the boosts from transfusions.

I shared my fears about all this with Sammy last week, before my counts started behaving, and mom echoed my concern the morning of my appointment.  What if the doctor didn’t think my body could handle another round?  What then?  I’m not usually a big worrier.  I know it doesn’t get me anywhere, but those questions kept popping into my head during the hour and a half we waited for Dr. Benjamin.  I had a book to read on my Nook, but I found myself re-reading the same page over and over because I couldn’t really absorb it.  Thankfully, as soon as the doctor walked in grinning, I immediately felt a weight lift off my shoulders.  I guess after all these years, I can tell when the news is going to be good versus bad.  After he admired and complimented my new state of ‘sans hair’, he went on to say that my labs were looking good.  White count, ANC, and hemoglobin are all still rising.  Platelets were up to 60K, rising only 6 from the previous day’s count of 54 (before that they were 44), but we weren’t quite to the three week mark, so he was happy with where they were.  However, they need to be at least 100K before we can start the next round (which was technically due to start this past Saturday), and at the rate they’re rising, it’s looking like it’ll be the middle of this week at the earliest before I would be ready to go.  That timing poses a bit of a problem.  I haven’t had the chance to talk about it much yet on the blog, but I’ve been part of a series of workshops in NYC, the most recent of which is a three-month leadership program.  When I discovered my treatment wasn’t going to allow me to travel to NYC this weekend for the culmination of the leadership program, the rest of the members of my leadership team surprised me by making plans to come down and do the weekend here in Houston!  Amazing, right?!  So anyway, I told Dr. B that I wanted to be out of the hospital when they were here, and since it looks like I couldn’t get this second round started in time to be done by the time they arrived, he decided to wait until the day they left for me to admit for round two.  When I inquired if delaying it a short time was alright, he said he thought my body could probably benefit from a few extra days of recovery time, so it all works out okay.

No chemo till this coming weekend means mom and I have had a lot of down time around here.  Not enough to make a trip home, so instead we’ve been planning some fun stuff in the area so we’re not sitting around the apartment all day every day.  Last night, we went down to Galveston for dinner at one of my favorite places on the island, Gaido’s.  It’s a seafood restaurant.  I’m SO not a seafood person, but it’s so good here, I make an exception.    After dinner, we walked the beach for a few minutes (it’s a crappy beach, really, but it’s a beach nonetheless) and then hopped in the car and headed back.  We also might see a movie this week, or go to a museum or the zoo.

When I am at the apartment, there’s plenty to keep me busy.  I’m still working my Arbonne business, reading a lot, plus working on writing our book, and doing a children’s book drive and a Livestrong fundraiser.  A lot, I know, but I’m committed to making a difference, and I’d love YOUR help!

For the book drive, my leadership team and I are collecting books for ages 0-21 that will be donated to children in need at local hospitals, libraries and schools.  It’s springtime, and I know many of you have books that are just collecting dust—please consider donating them to this worthy cause!  Contact me via e-mail at stephanieminge@hotmail.com to arrange for pickup.  I may not be in Ohio, but I have ‘helpers’ who are there to pick up your donations, and I am in Houston if anyone around here would like to contribute.  My goal is 3000 books!

I’m also fundraising for the Lance Armstrong Foundation.  Many of you know that Sammy has done the 100 mile Philadelphia Livestrong Bike Challenge in years past, and I committed a few months ago to join him and do the 40 mile course.  Now that I’m currently on treatment, I may not be able to physically participate in that ride, but I’m still raising money because the cause is so near and dear to my heart.  Sammy and I are involved in the local Livestrong chapter, and the information and support they provide to survivors and caregivers has been immensely helpful for myself and so many others.  Please visit my fundraising page at http://laf.livestrong.org/site/TR/Challenge/Challenge?px=1017740&pg=personal&fr_id=1180 and consider making a donation.  THANK YOU for helping make a difference!!

In other news, Sammy is coming down on Thursday (hooray!!) and sticking around for nearly a week.  I’m so excited to spend some time with him.  Mom will be going home for a few days during that time to take care of a few things with grandpa’s estate, and just to relax.

Okay, so I know there’s lots more to talk about, but it’s super late, and my eyelids are drooping.  I will post again soon.  Night all.

-Steph

Posted by Stephanie 10pm CST  from the apartment

So, my transition to Super Hot Bald Chick is complete.  In other words, my hair is gone.  It started the middle of last week.  I have this habit of playing with my hair, as short as it may be, when I’m just sitting around on the couch or hanging out surfing the web.  Most of the time I don’t even realize I’m doing it.  Starting a few days ago, I could get one or two hairs if I reached up and pulled.  The next day, that number in certain places on my head became five or six at a time.  Yesterday morning, I woke up to find my pillow scattered with short dark hair, and I barely had to reach up and tug to get 30 hairs in a little cluster.  I tried to wash it that night, and it was on my hands, all over the bottom of the tub, basically everywhere except on my head!  This morning, as I tried to gently comb my super thin hair into something acceptable for leaving the house, I realized I was sporting a few bald spots, and knew without a doubt that it was time.  I stuck a hat on my head so no one would have to be subjected to the sadness it was, and this afternoon after bloodwork, I had it shaved off at the beauty/barber shop there at the hospital.  As annoying as it was getting, shedding everywhere, I’m glad it’s gone.  I know that may sound strange to some people, but this is the fifth time I’ve lost my hair, so I’m not attached to it the way I was the first time. 

Immune system update: my body sucks.  No, really, I think it’s gone bonkers.  Even the triage nurse was telling me everyday that I needed to have a serious chat with my bone marrow.  My white count and hemoglobin dropped slightly on Wednesday, and my platelets continued their downward spiral, resulting in a third platelet transfusion for this round.  After the first two I had, my platelets went up some, of course, but not as high as they should have been at only around 35K, suggesting they were still dropping.  I expected something similar this time, so I was shocked when Thursday’s bloodwork showed they were way down at 22!  In addition, my hemoglobin had dropped from 8.0 down to 6.9—low enough to warrant a packed red cell transfusion.  And if that weren’t enough, my phosphorus level went from nearly normal at 1.8 to almost nonexistent at 0.7.  Huh?!  I’m already taking six K-Phos tablets a day to keep it in normal range.  Even Dr. Benjamin was stumped by that turn of events.  The only good news was that my white count had climbed from 0.5 to 0.9.  All in all, I was scheduled for 2 units of packed red cells and a I.V. phosphorus infusion for Thursday evening.

It was a long night.  The appointment was at 6pm, but we sat in a packed waiting room for a solid two hours before being taken back.  That’s when we learned the phosphorus infusion was going to take six hours.  Six hours!  I knew the two units of blood would take four total, but I wasn’t anticipating being there much past that.  By the time everything was delivered from the pharmacy, got hooked up, and ran it’s course, it was 2:40am when I staggered sleepily from the hospital.  Needless to say, mom and I were more than ready for some decent sleep when we collapsed into our beds around 3:15am. 

Friday’s labs were far less exciting.  White count was the same, hemoglobin was up to 9.5 from the transfusion, and platelets were down to 14K.  Saturday, I went for another set (we’re now going on more than a week and a half of daily labs—my poor veins are cursing me), and was thrilled to learn that everything, EVERYTHING was going up.  White count up to 1.7 (no more hermitude!), hemoglobin up a couple of tenths, and platelets rose from 14 to 18.  It’s not much, but by golly, it’s something, and it’s in the right direction!  Yesterday showed things still going up, but today my hemoglobin has dropped almost a whole gram.  Platelets continue to be the slowest to recover, coming up only four or five at a time, today’s reading at 28K.  Until we show significant progress, I will continue to be on daily labs.

Aside from our daily trips to the hospital, there’s not a ton going on.  The move into the apartment last Wednesday went smoothly, and the place is beautiful.  The church just updated the apartment, so the couch, recliner and mattresses are just a few weeks old.  In addition there’s a lovely patio to sit out on and soak up some vitamin D.  It is at the very top of the price range for the church ministry program, at $35 a day.  WAY cheaper than a hotel, but it still adds up to more than $1000 a month.  

Mom and I try to get in a short walk everyday, be it around the apartment complex or at the hospital.  I’m able to handle about 10 minutes at a relatively slow pace before I tire out.  Definitely better than this time last week, when mom was pushing me through the hospital in a wheelchair.  Speaking of mom, my hat goes off to her for all the time she spends in the kitchen everyday.  With the nutrition plan I’m following, plus the couple of complementary/alternative therapies I’m doing, she is making fruit and vegetable smoothies four times a day, blending this cottage cheese and flax seed oil mixture twice a day, plus making breakfast, lunch and dinner from scratch.  The amount of dishes done around here everyday is pretty ridiculous, but I’m thankful she’s here to do it, and thrilled we have the time and means to make it happen.

So that’s about it for now.  I miss Sammy terribly.  We chat on the webcam often, but it’s tough to be apart.  I’m looking forward to his next visit at the beginning of May!  Goodnight all!

–Steph

Posted by Stephanie  8pm CST  from the hotel  Houston, TX

Howdy folks.  Been quite busy in the week since I posted, so I wanted to hop on and get everyone caught up!

As I mentioned in my previous post, I discharged from the hospital last Monday, which was AWESOME.  Three days certainly beats a whole week, like I was previously accustomed to.  The hydration battle continues. Despite drinking so much fluid that I felt like I was going to float away, my creatinine rose slightly for a couple of days (challenging to replace the 6 liters a day I was getting via I.V. in the hospital!), but has since come down to an acceptable level.

In the world of blood counts, my immune system didn’t put up much of a fight, and within two days of my escape from the hospital, it was already headed downhill.  That’s a bit quicker than normal, but not really surprising, considering how much it’s been beat up in the past.  My white count and hemoglobin held on for a few days, but my platelets didn’t last long, and when they were at a measly 8K on Thursday, I had a platelet transfusion.  Over the weekend, white count and hemoglobin joined the ranks of the non-existent, and I really started to experience some of the nastier side effects that come with a non-functioning immune system—ongoing low-grade fever (as high as 101.1 the other night), swollen gums, sore teeth and throat, raw esophagus and stomach, elevated heartrate (at rest it’s 126 bpm), nausea, vomiting, and severe fatigue.  Walking from the couch to the bathroom is like running the last 0.2 miles of a marathon.  Okay, so I haven’t ever actually run a marathon to know for sure, but I’ve got to imagine that’s what it’s like.  That first platelet transfusion held me for a couple of days, but Sunday they were low enough to warrant another one.  As I write this, they continue to drop (back down to 17K today), so if they get below 10 again, I’ll be looking at a third platelet transfusion.  Two in one round, I’ve done, but three?!  Come on!  I was thrilled to learn today that my white count has turned the corner and start to climb (from 0.3 to 0.4, woohoo), and I’m hoping that my hemoglobin, at an oxygen depleted 8.4 (normal is 14), and platelets get with the program quickly.

I do feel less puny today than I have the last few days, with the only real issues being fatigue and a nasty raw esophagus and throat.  It’s made eating a challenging task, but I’m working to eat something small every couple of hours.  I’ve lost a few pounds since starting treatment, and I don’t want that!!  My weight was already down quite a bit since January’s surgery, and I need to keep it on and stay nourished so that I can fight back against the chemo side effects.  Speaking of nourishment and nutrition, I am taking real charge of that this time.  Listen, I’ve always eaten healthy—organic, lots of produce, lean protein, high fiber, minimal dairy and gluten, etc.  But I also loved a good cheeseburger slathered with mayo and a giant order of fries, a big slice of pizza, or a giant bowl of comforting mac and cheese.  I’m not messing around this time.  Over the years, dad and I have done lots of research on the amazing benefits and results of a nutrient-dense, high anti-oxidant diet.  Disease reversing, life saving nutrition.  Green smoothies, superfoods, and most important, nothing processed.  If it comes in a box or a can, it’s not going in my body.  I’m making my own bread, chicken stock from scratch, and so on.  Dad has ordered me a vita-mix blender (so excited!), and I’m taking supplements that support my diet and help to detoxify and fight against the cancer in my body.  I feel empowered doing this, which is vital in a situation where I could easily feel powerless and victimized.  But that’s not me!  I am powerful, I am healthy, and I am well!

Great news on the housing front.  Mom (who arrived last Wednesday to relieve Sammy so he could head home and get back to work) and I moved from Joe and Sarah’s into a hotel on Friday, since I need to be a hermit when I have no immune system.  I knew there was a possibility of being stuck in the hotel for awhile—last year it took more than three weeks for something to open up—so I was thrilled when I got a call Sunday afternoon that an apartment was available this Wednesday (as in tomorrow).  It’s in the same apartment complex where we stayed for a couple of weeks during surgery in January—a different place than our usual stomping ground, but a really nice complex, and very close to the hospital.  It’ll be great to spread out a little bit, get settled, and have access to a real kitchen (though mom has done WONDERS with what minimal equipment and space she has to work with in here!).

Alright, I’m off for now.  Time to eat some dinner and pack up for the move to the apartment tomorrow, or more accurately, sit here while mom does the packing, since being upright takes great effort!  I will be posting more regularly now that things are settling into a routine.  Have a great night!

Steph

Posted by Stephanie  2pm CST  from the hospital

Howdy all. I’m sitting here chillin’ in the hospital room while Sammy runs a few errands and prepares for my departure. That’s right–I’m being discharged later today! I’m used to being in the hospital at least a week per chemo round in the past, so this is quite a surprise. The last time I did this regiment, WAY back in 2005, the Cisplatin was given as a one time dose, but the Adriamycin was given over three days, resulting in a much longer stay to monitor my response and counts. When I admitted on Friday night, we were told that this might be a shorter stay than my previous ones, since I was only getting a single dose of both Adriamycin and Cisplatin, and sure enough, my creatinine level (measure kidney function) is staying low enough to let me loose. In addition, I haven’t thrown up once (hooray) and have gotten the periodic nausea under control. Just under three days total in here–I’d consider that a champion effort!

Believe it or not, now the tough part really begins. I’ve had the benefit of constant I.V. fluids pumping into me while I’ve been in here, which is certainly helping to keep my creatinine level down.  I drank water as long as I could (it tastes terrible now), and then switched to green and detox tea (or water with a LOT of lemon), but I’ve got to work hard to down several liters a day to keep up with the demand on my kidneys. Whoever’s job it is to be with me during this time, be it Sammy, my mother or sister, they earn the title “fluid nazi”, and have every right to ride my tail until I get enough liquid down. In addition, we’ll keep an eye on my blood counts with labs three times a week, and as soon as they start to drop, I’ll go into “hermit mode”, where I can’t be around large groups of people or those prone to carry illness (elderly, children, etc.). Ah, the joys of chemo.

In other news, still no word on more permanent housing for us down here. As soon as we got the news from Dr. Benjamin last Thursday, Sammy called the church apartment ministry program that we’ve used so many times in the past and got our name on the waiting list. As soon as they have something open up, we’ll get a call, but there’s no way to know if that will happen in three days or three weeks. For the time being, we’re continuing to shack up with Joe and Sarah, but once my immune system tanks, we’ll have to get a hotel room so that I can be in a more sterile environment.

Right now, Sammy plans to head back to Ohio either Wednesday or Thursday, and my mom is gathering stuff at home and packing up her car to head down this way as his relief in the next day or so. We certainly hadn’t planned to stay in Houston for any length of time, so there’s a lot to be brought down, including clothes, some comforts of home, and a lot of medical and nutritional supplies to help me battle this the best I am able.

So there’s your whirlwind update for the moment. Sammy and I are floored by the level of support that we have (and continue) to receive since this news hit last week. I truly cannot express in words the love and gratitude I have for each of you that have reached out to us via FB, the blog, e-mail and phone. Please know that your support is what has kept us going at points over the last few days, and will surely continue to do so–keep it coming!

More to come later. For now, I’m going to take my I.V. pole for a spin around the nursing station and try to get rid of some of this built up fluid retention. Ciao!

-Steph

Posted by Stephanie  11pm CST  from the hospital  Houston, TX

Even though I haven’t done this chemo combo since 2005, I remember feeling like this……and I don’t like it! This’ll be VERY short, as I’m doing pretty rough tonight–debilitating nausea that we’re still trying to get under control. I’m hoping this third anti-nausea med will do the trick.

Sammy or I will be on tomorrow to post about the first day or two in the hospital, plus other happenings and news.

Good night!

-Steph

Posted by Stephanie  11pm CST  from Joe and Sarah’s  Pearland, TX

Hey gang. Long time no see talk. I have sat down at my computer many a time in the last few weeks, ready to churn out a post, but something has usually pulled me away–a phone call, dinner, etc.  I told myself that was okay, because I was busy getting stuff done, making things happen….living life (and by golly, that’s a blessed opportunity for me). So then, what is it that brings me to put up an actual post? Sadly, nothing good.

Sammy and I are in Houston for a checkup for me. It’s his spring break, so we decided to drive down and spend the whole week here. Go to Galveston, eat lots of great food, visit with friends. Oh, and of course undergo the requisite scans and doctor’s appointments. I had the scans Wednesday night–CTs of the chest (requires I.V. insertion for contrast), abdomen (had to drink delicious barium), and pelvis (involved having a tube shoved up the bum for rectal contrast); and was certain that would be the most unpleasant part of our hospital time. And it was, until we saw Dr. Benjamin the next morning.

The appointment with Dr. Benjamin started the same as always–a big hug and an inspection of my current hairdo. He sat down and asked, “Feeling good?” Yes, albeit a bit sore from surgery and easily tired, but yes. “And you look good on the outside.” Thanks. “But not on the inside.” Ugh. Those words made my stomach drop. He went on to explain that I had not one, but three small nodules in my left lung. Moreover, I had a large (10 cm), rapidly growing tumor on the left side of my liver. He spun around in his chair and brought up the scans on the computer, sliding through images until he found the area in question. Three months ago on the scan, there’s no sign of it, but there it is now, big and hideous. The return of disease in more than one place is cause for concern, but the real danger is in how quickly the liver mass is growing. “Running rampant through your body” is the phrase I believe he used. He went on to explain that had the Ifosfamide we used last year to treat my lung and lymph node areas been truly effective for my whole system, I shouldn’t have disease recurring only a handful of months after the chemo was stopped. That fact has led him to believe that trying Ifosfamide via the backpack again, like last year, would not be effective, and going back to high-dose inpatient Ifosfamide would, in his words, “probably kill you”. In fact, according to Dr. B, there aren’t any great options for treatment this time around. Each time previously, he’s felt the chance for success and remission was very high, but this time, we’re “up against the wall with no place to go, and this may very well be our last stand”.

By this point in the conversation, I was feeling a little numb. My eyes were on Dr. Benjamin, but my brain was threatening to shut down. I managed to stay present enough in the conversation to hear that his plan of attack is to use the Adriamycin-Cisplatin chemo combo. Those of you who have been following this blog from the start may remember that that combo is the first one tried on my initial tumor. You may also remember that it was ineffective against said tumor at the time. Dr. B said that since these metastases are mutations of my original tumor, perhaps the combo will be more effective this time around. Surgical resection may be possible, but only if we see response first. Otherwise we’d just be cutting out tumor that’s guaranteed to keep growing. He was upfront in saying that he feels the chance of success with this chemo is small, and he wanted me to understand what that truly means–that I may soon be untreatable. I didn’t want to ask, but I had to know. How long did I have if my tumors did not respond? “Well,” he said, “at the current rate of growth, I’d say you have 3-6 months before the liver tumor becomes more than your body can handle.”

BOOM. There it is. Holy $*&#. I could be dead in three months. Not exactly what I expected to hear today. I truly believed coming into this appointment that I would have clear scans, and even if I didn’t, it would just be another small lung nodule, slow growing and treatable. This, well, this sucks, to put it mildly.

It was impossible to hide my emotion at hearing that bomb, and I felt a few tears spill over as Sammy reached over to clench my fingers tightly in his. I know that it’s important to really be in a moment like that, and acknowledge how I’m feeling, instead of just tamping it down inside me. So, I did. After Dr. B and team left, Sammy and I stayed in the room a few minutes to have a few “What the hell are we going to do this time?” moments, and then it was time to pick ourselves up, dust off, and put on our game faces. Warrior mode, here we come.

So yeah, that’s it in a nutshell, though there’s still more info to share when it’s not after midnight and I’m no longer exhausted. First thing tomorrow morning, I’ll have a new CVC line put in, and later in the afternoon, I’ll be admitted to the hospital to start chemo. Once I’m settled, I’ll get back on and post with some more details about treatment and what’s to come the next few weeks.

Be certain of this. I. AM. NOT. DONE. This stupid disease has not won, and I am ready to defy the odds and prove the doctors wrong. I’m in for the fight of my life this time, and I fight dirty. Look out, cancer, I’m coming for you.

-Steph