Posted by Sammy

Feb 22 8pm

From Home

I made it! Even with kids on the plane! Though I have to say the kids didn’t make a peep. Guy in the row behind me, however is another story. With all the narrative inflection of Rain Man, he was giving his (i assume) wife the play by play of taxi, takeoff and landing down to the gallons of jet fuel being pumped into the plane and what could go wrong. Great. Please shut up, sir. We’re on a plane. If the engine stalls, you can’t exactly pull over, put the hood up and call AAA. The plane is a toothpick with wings. We all have windows and can see what is happening. Shut up. 

So on the subject of the flight, it was smooth but lets tackle one subject. See for those of you who do not fly much or not at all, pilots of different airlines have different styles of descending into the airport to land. For example:

Delta: The slow and steady approach. They just take their time and level off altitude so slowly you hardly notice except that the flight attendants go back to the galley. 

Pros: Very smooth. Plenty of time to adjust your ears and finish your e-book. 

Cons: You start your “initial descent” about an hour before you get there so by the time you put your headphones away you still have to sit there for 25 minutes staring out the window at a cloud. 

Air Tran: The B52. These guys circle forever scrubbing off about 1000 feet per turn. Its like a big carousel in the sky. 

Pros: Efficient, doesn’t make ears go pop too bad and you know for sure when you need to put your stuff away. 

Cons: Looking out your window and realizing you are at 30,000 ft and banking harder than Dale Earnhardt Jr. in turn 4 at Talladega can be a little disconcerting. 

Southwest: Ok, lets face it. No one knows what happens on those planes since your are sitting next to total strangers and the goofy polo-shirt wearing “flight attendants” are trying so hard to make everyone laugh and be sky buddies youre just hoping that maybe the pressure change will blow out your eardrums and you wont have to listen to them anymore. 

And then there is Continental. Now the nice part about this airline is if you play your cards right you can get a pretty awesome deal that avoids a layover and gets you professional flight attendants and the option to purchase what is, in all honesty a pretty tasty snack pack. The downside? The method of approach here is pretty much “Hey! There’s the airport. Time to point the plane down!” I had my stomach shoved up into my nostrils like it was the last drop on Millennium Force. After my brain stopped floating about 3000 feet above me and returned to my skull, i took that as my signal to discontinue my use of electronic devices. 

On behalf of Continental Airlines and your Houston based flight crew, we’d like th thank you for flying with us today.

As I said it was a great trip down for me and im looking forward to getting back over spring break. Like we both have posted on Facebook, we did get the chance to see a FANTASTIC concert on thursday by Grace Potter and the Nocturnals. If you havent heard of them, look them up…it was one of the best concerts I have ever seen of any music genre. Really it was just a treat to get to see them perform and I NEVER say that….ask my students  If you get the chance to see them live, GO. Super talented and clearly love what they are doing. It was a really genuine performance…zero irony or pretentiousness. Here are a couple of Youtube links. One is a high quality video of them on the ellen show, the other is a pretty good fan-shot video of a performance. 

http://www.youtube.com/watch?v=nk2E22uHAp8  Ellen link

http://www.youtube.com/watch?v=yDKYWQOyH_g  Fan-shot

Sammy

Posted by Sammy

11pm from the apartment in Houston

I feel like I’ve been spending an inordinate amount of time in airports lately. It comes with the territory when this is going on its just been a few years since I’ve flown so much. Flying always weirds me out just a tad, especially on the smaller planes where you really feel every turn and move. At the same time its fast, for the most part, and can be kind of fun. The flying part that is. The flight attendants and pilots are usually pretty ok too. Its the other people I get to fly with. Its not a big deal on those smaller planes. Those are basically a kind of commuter flight. Mostly business people and lone travelers. Everyone has their reading material and noise cancelling headphones and is pretty efficient getting on and off the plane. The bigger the plane, however….then its a McDonald’s Playplace in the sky. Kids. Loose. Crying. Eating. You see apparently due to altitude, any child under 8 years will starve to death during a plane flight lasting longer than one hour and the only way to sustain them is to bring as much McDonalds food as you can carry on board. Usually the offenders also fail to understand things like the laws of physics when it comes to what to do with carryon baggage and the capacity of overhead bins. But I digress. Crazy families with unharnessed children have as much right to use the plane as the rest of us. I wish them well…and suggest doggie downers. 

Trevor just couldn’t understand why they made him gate-check his carry on.

Its been a good week here in Houston. I fly home tomorrow to the land of cold weather and scary legislature. I wont get into the ins and outs of SB 5 too much on here but suffice to say we have some concerns and will be paying close attention to what happens. We got to have some good food and fun with friends on Sunday. It was nice to get to spend some time with Steph. I keep so busy at home I didnt stop to think I hadnt seen her since January. It will be the end of March when I come back for spring break. Im looking forward to coming back down. It will be immediately following quite a bit of activity back home including large ensemble contest, a sarcoma conference, our musical and the educational do-see-do that is the Ohio Graduation Test. Im really happy to see how well Steph is doing on this chemo. Granted its only been one round but so far its much more tolerable and no week-at-a-time hospital stays. Granted if you have to stay in a hospital MD Anderson is by far not the worst one and we had it down to a science. However I’d prefer not to be on a first-name basis with the Smoothie King graveyard shift crew again while im wandering around at night with all my stuff to kill time looking like im doing Ghost Adventures, MD Anderson edition

“Do you not like cancer either?….DUDE! Did someone just throw a chemo bag at me???”

Ahem. Moving on. So heading home tomorrow. Back to the real world for a few days and one week closer to closing the book on this chapter of “How To Live Two Lives at Once Without Really Trying”

Sammy

Posted by Stephanie  2:00pm CST  from the apartment  Houston, TX

I know it’s been a whole week since I last posted, but it’s been a bit crazy around here with lots of things going on.  I hardly even know where to start!  Guess I’ll go with medical stuff first….

I finished up my extra three days of I.V. fluids on Monday night, and FINALLY got unhooked from the backpack.  I literally spun in circles around the hotel room, just because I could, and relished not having to lug that thing with me everywhere.  I had labs everyday this week, to keep an eye on my counts and electrolyte levels.  Sunday’s CBC showed my white count was still dropping at 1.1, but by Tuesday it was already on the way back up.  It never got anywhere near the super low level I’m used to when on chemo.  I’m sure that’s largely due to the daily Neupogen shots I started on Sunday evening.  I’ve had Neulasta in the past, which is a one-time injection (caused HORRIBLE, bone-deep aches), but Dr. Benjamin opted to go with a less-potent, shorter-term booster this time because he didn’t think I’d need the heavy duty stuff.  I still had some achiness the day after the first injection, but it was nothing like with Neulasta, and after four days of injections, I was able to stop the Neupogen.  My hemoglobin didn’t really drop at all, and though my platelets dropped, they were still in the 80′s mid-week, so my counts surprised me a little.  

As for my electrolyte levels, well, they’re a different story.  After the adjustments to my I.V. fluids, they were hanging in there great, but as soon as I stopped those, my CO2 level started to drop.  In fact, it dropped 10 points in the span of two days.  Eek!  By my appointment with Dr. Benny on Thursday, it was an abysmal 16 (low end of normal starts at 23).  That’s always been my problem with Ifex–my kidneys just leak bicarb like a sieve.  At it’s worst years ago, I was taking 48 oral soda bicarb tablets a day, and they had as much in my fluids as they could without them crystallizing.  Luckily, it’s not bad yet, and can easily be adjusted.  My phosphorus and potassium are also dropping.

Speaking of Dr. Benjamin, I saw him Thursday to review this first cycle and see if I’d be ready to start cycle 2 the next day.  He was glad to see I really breezed through the first cycle side effect-wise, and started me on potassium tablets (2 a day).  He also upped my phosphorus tablets (I’m now taking 5 a day), and then pondered the CO2 situation.  He said he could easily fix the problem in my I.V. fluids, but I would then need to be on I.V. fluids all the time, even between chemo cycles, and he didn’t want to do that.  Instead, he wanted me to start on oral sodium bicarbonate–16 tablets a day.  Fun times.  As for starting the next cycle, my platelets need to be above 100, and they aren’t yet, so we have to wait.  Right now, I’m tentatively scheduled to start on Tuesday, although that depends on what my bloodwork Monday shows.  Dr. B thinks I’ll probably need between 1 1/2-2 weeks between cycles instead of the single week that we initially planned on.  I hate that we’ll have to postpone each cycle by a little bit, since it drags out the overall length of treatment, but the good news with it is that it might allow me to get home for a few days between cycles.

The last bit of info from my appointment with Dr. Benjamin is that he doesn’t think this regiment can be done at home.  I really already knew that, but I was holding out a little bit of hope.  Part of the issue is that I need to have my chemo bags changed out every day for 14 straight days.  Dr. Romer’s office back home can easily do that during the week, but they’re closed on the weekends.  That means that not only would his office have to have my orders and access to the medications I need, but so would a local hospital.  That’s not easily done.  The bigger issue, however, has to do with the rarity of this regiment (it’s been used mainly in Italy thus far), the high-dose factor (it’s given slowly, but it’s the same insanely high dose I received before), and the fact that an oncologist back home may not have the knowledge to know how to make adjustments mid-cycle with something like this.  Oh well, looks like we’ll be here in Houston for the length of my treatment.  It’s our second home.  :)

That flows just perfectly into the update on our housing situation.  When I learned of this recurrence at the start of January, we thought we were going to be able to stay at Joe and Sarah’s house in Pearland for the duration of treatment.  Then we had to get the hotel for a couple of weeks while they had family in town.  Now, we’ve learned we won’t be able to stay with them at all.  Their daughter’s pediatrician informed them that she could not get her 9-month vaccinations if there were someone with a compromised immune system living in the house.  Even though my counts aren’t low enough to make me susceptible for more than a few days, it’s not as strong as a healthy person’s.  The need for several sets of immunizations over the next few months, plus some new, additional visits from family and friends make their house no longer an option.  We had put ourselves on the list for an apartment before moving to the hotel, because if we got one right away, a couple of weeks in an apartment would still be cheaper than a hotel.  However, after three weeks, we still hadn’t heard anything.  It’s NEVER taken more than a week or so to get a call about one, and we were really starting to fret about the cost of the hotel.  Though it’s an extended stay place, and cheaper than most places, especially with the medical rate, it’s double the daily cost of an apartment.  We kept extending our length of stay in the hotel, but come next Tuesday, availability at that hotel, and almost all others in the area, disappears because the Houston Rodeo begins.  We found another hotel to stay in for another week past that, but it wasn’t something I wanted to have to do because of the cost, so I was thrilled when we got a call about an apartment yesterday morning.

The apartment is in the same complex we’ve been in every time, though this is a different church than we’ve worked with before.  It’s more simply furnished and decorated than previous places we’ve had, but it’ll work just fine for what we need.  Cable (with lots of channels, yay!) is included, and we have added high-speed internet.  Some of the apartments have included it, some haven’t (remember the many months of dial-up?  I’d rather not), but this church smartly worked out a deal with Comcast to allow tenants to call and add it, even though the church maintains the account.  We just have to pay the monthly fee.  

Most of the apartments we’ve had have cost between $30-35 a day, depending on how much the church can subsidize the cost.  That’s great compared to a hotel, but it’s still around $1000 a month.  However, this place is significantly less per day, and will save us some much needed money.  What a relief, since this wasn’t an expense we expected to take on.  We moved everything in yesterday and are continuing to get settled, and my spirits are already lifted just having the extra room!  What a blessing.

Well, in other news, I am now a bald beauty.  My hair started coming out early in the week, with just a few stray hairs here and there.  It got worse day by day, and by Thursday I couldn’t wash or style it without my hands (and the sink and shower) being covered in hair.  Annoying beyond words.  Did I still have a lot of hair on my head?  Yes.  Was I willing to put up with more and more hair coming out everyday?  No way.  This’ll be the fourth time my hair has fallen out–I lost my attachment to it a long time ago.  I see people all the time that hang on till the bitter end when they’re hair starts coming out, and I get that, I really do, but for me, when it gets to this point, I just want it gone.  I managed to deal with it through Thursday, but when I woke up Friday, it was exponentially worse, and my pillow, neck, clothes, etc. were covered.  I knew the time had come, and so it was off to the hospital barbershop to have it taken off.  So much better now!  They even give you a free scarf/hat and a wig (which comes shoved in a baggie and looks terrible, thanks but no thanks, not my style) whenever you have your head shaved, so I have a lovely new scarf.  I’ll have to post some new pics up here–it’s been years since I’ve updated that part of the xanga site!

Otherwise, things have been going well.  I feel wonderful.  I’ve even had the chance to get out and hang with some people.  I met with four wonderful women for lunch last Sunday, one of whom I connected with through Arbonne.  That opportunity has given me so much, including the chance to form friendships with women from all over.  I also got the chance to see Tami on Thursday.  For those of you who haven’t been along for the whole journey, Tami was the APN on my medical team from my original diagnosis in 2005 until 2008.  She happened to be at the hospital on Thursday visiting, and she and I grabbed some good ol’ Texas BBQ and caught up.  Awesome.

Sammy is down here right now.  Mom flew home Thursday afternoon, and he got in Thursday night.  We went straight from the airport to the House of Blues in downtown Houston for a concert.  Sammy discovered this group a few weeks ago while flipping through the channels on tv, and was super excited that they were going to be here for a show during his visit.  The group is Grace Potter and the Nocturnals, and if you don’t know them, look them up and listen to them.  Like now.  AMAZING.  I myself haven’t been to many rock concerts, but Sammy has, and we both agreed that this was the best group we’ve ever heard live.  They put most of the super famous stars I’ve seen sing live on tv to shame.  It was really, really, really a great show, and a great time.

Sammy will be here through Tuesday afternoon, so we’ve got lots of time, which is nice, since I haven’t seen him in weeks, and I won’t see him again till probably the very end of March.  The weather is great (mid 70′s) and we’ve got lots of plans for tex-mex (of course), and hanging with Joe and Sarah some too.  Hooray.

Wow, this turned into quite the lengthy post.  Hopefully you made it all the way to the end.  :)  For anyone who’d like our address down here, send an e-mail to me at stephanieminge@hotmail.com or Sammy at sammyminge@gmail.com and we’ll happily give it to you!  Have a wonderful weekend!

-Steph

Posted by Stephanie  6:30pm CST  from the hotel room  Houston, TX

Well, in about an hour, I will be getting disconnected from chemo, signifying the end of round one!  Hooray!  However, due to my low C02 level over the last several days, I’ve been assigned three extra days of continuous I.V. fluids.  So, that means the backpack has to stay put for awhile longer.  Boo.

My C02 level has climbed slightly since the beginning of the week, thanks to two increases in the sodium acetate additive in my fluid bags.  It’s now 600meq, which is double the amount they started with two weeks ago.  That number probably doesn’t mean much to any of you, and not really to me either, but I’m so used to keeping track of these things and writing them down so that I can look back on them for reference later.  In other bloodwork related news, my immune system is starting it’s downward spiral.  Dr. Benjamin thought it would happen sometime around the end of the 14 days, and he was right on, as usual.  I’ve only been getting a CBC (which checks for white blood cell, red blood cell, hemoglobin and platelet counts, among others) once a week.  Last Friday’s numbers were great, and today’s are significantly lower.  Not sure exactly when the drop started, but my WBC (white blood cell) count today is only 1.8.  That’s far below normal, but not anywhere near scary yet for me.  It’s been as low as 0.2 in the past.  :)  Hemoglobin is staying strong at 11.3 (though that’s down a bit from last week), and my platelets are hanging in there at 140.  We know my WBC will drop low, and once it does, I’ll have to stay out of big crowds and away from sick people till it comes back up.  That’s not a huge deal.  The big thing to watch out for will be my hemoglobin and platelets.  If either of those drop too low, it could mean a blood transfusion.  I’ve had plenty in the past, but it’s obviously best for my system if it doesn’t get to that point.  I have bloodwork daily starting Sunday, so we’ll be able to keep our eye on things.

I’m still feeling really good.  The half-raw, weird coated feeling in my stomach and up my esophagus continues, and water still tastes weird.  Just in the last hour or so, I’ve started to get this half-numb feeling on the left side of my head…..not sure that’s a good thing, and could very well be the ‘neurotoxicity’ that they warned of creeping in on me, but I’m not too worried, since the chemo stops tonight.  It does feel mighty strange.  I’ve also noticed my heart rate has been quick to race lately with not much effort.  Mom and I try to do 20 minutes on the treadmill/bike in the workout room several times a week, and where it was easy a week ago, it takes a little more out of me now.  Even my resting heartrate is high, between 85-95 (normal is supposed to be down close to 60), but this happened on Ifosfamide before, so I’m not surprised by it.  At least I’m still able to get around without any problem, unlike years ago, when my heart skyrockted to 180bpm with just a few steps!  Let’s hope we don’t get to that point again!

Alright, I’m off to the hospital.  Have a great weekend everyone!

Posted by Stephanie  6pm CST  from the hotel room  Houston, TX

So, story time.  Monday was dressing change change day.  That in itself isn’t terribly exciting, except that since my dressing is going to be changed, it also means I can shower without copious amounts of saran wrap and water proof tape and that dressing can get wet, no problem.  Now, a shower like that is something to get excited about, at least for me, who doesn’t have much to get excited about nowadays.  ANYWAY, I was taking said shower, even shaved my legs (which won’t be necessary much longer, thanks chemo), and was just standing under the hot water when I got the overwhelming feeling that I needed to sit down.  I wasn’t tired, so to speak, and my heart wasn’t racing–I just felt like I really needed to sit down and rest for a second before I could do anything else.  So, I turned off the water, got out of the tub, and sat immediately down on a towel on the toilet seat.  I kept thinking to myself, “Just sit here for a second, and then you can dry off,” and then the next thing I know, mom is asking me if I’m okay.  ”Yes,” I answer, and I’m thinking, of course I’m okay.  But then I start to realize that I’m no longer sitting, but laying on the floor in the fetal position.  Naked.  I must’ve passed out.  Huh?  ”Did you fall?” mom asks.  ”No.”  I’m starting to realize, yes, I must have, but I don’t want her to know that, because, hello, I don’t want anyone to walk in on me laying naked in the fetal position on the bathroom floor.  That’d just be weird.  ”Did you bump into something?”  ”Yes.  I think I slipped off the edge of the bathtub.”  What?  Why did I say that?  I wasn’t even sitting on the edge of the tub!  ”Do you need help?”  ”No.”  Well, maybe, but at this point, only a few seconds had elapsed, and I was still trying to get my bearings.  Somehow I managed to answer her questions and convince her that I was okay.  And I was.  I knew I wasn’t hurt, and after another 20 seconds or so of laying on the floor, I managed to pull myself up to a sitting position.  I stood up and took a minute to dry myself off while I had the momentum, then threw on my bathrobe and walked out into the hotel room to sit in the recliner chair.  She gave me quite a strange look, and so I launched into my story of passing out, and that’s when it hit me.  I passed out.  I’ve never passed out randomly like that before.  What on earth?  It’s quite unnerving to be sitting somewhere one second, and then wake up the next second on the floor.  I hit my head, though I don’t know whether it was on the tub or on the floor, and now have a light bruise.  Otherwise, though, I’ve been fine since.

All mom and I can figure is that taking a long, hot shower caused my blood vessels to dilate to the point that my blood pressure dropped and I passed out for a second.  I’ve taken long showers in hot water before and never had a problem, but never while on chemo, and my blood pressure does run on the low side normally anyway.  It appears to be just a random fluke thing, but how funny is it that it was at that moment, in that situation?  I can laugh about it now, but I am thankful it didn’t happen while I was standing in the shower!  That would not have been good.

There ya go.  A little something down here to break up the monotony.  :)  That’s the only exciting thing to really go on since I posted last.  I had bloodwork Monday and today.  Monday’s numbers came back a little funky–low phosphorus (which I am taking tablets for, and have been), and my C02 was only 22.  For those of you that haven’t been following my treatments in years past, that’s low for your C02 level, and that’s what caused me to stop high-dose Ifosfamide before.  My poor kidneys couldn’t hold onto enough bicarb, even with me taking 48 sodium bicarbonate tablets and having it packed into my I.V. fluids.  So far through this chemo cycle, my C02 level had been staying steady around 25, so when I got results that it was dropping, I emailed my nurse Mara to see if I needed to start taking oral soda bicarb.  She spoke to Dr. Benjamin, who decided to up the level in my fluids rather than have me start oral meds.  It seems to be working–my C02 level today was up a point at 23.  Hopefully it keeps climbing! 

Okay, more to chat about, but I’ve got to head to the hospital for my chemo bag switch out.  Tonight is bag #13 of 14, so the end is in sight!  I can’t wait to get rid of this backpack for a week!  

-Steph

Posted by Stephanie  2pm CST  from the hotel room  Houston, TX

It’s Superbowl Sunday.  Normally, that wouldn’t mean much to me, seeing as how I’m not a huge football fan, but it is an excuse to eat mass amounts of ooey gooey, cheesy, crunchy yummy things, and so for that, I am excited.  Sadly, I’ve been looking forward to it all week just for that reason.  I guess that’s what happens when you literally have nothing else to do.  Mom and I have to have our little pigout session before the game even starts tonight, because we’ll be headed to the hospital shortly after the game gets underway to get chemo bags switched out.  We’ll be able to watch the game in the room while I’m getting my daily dose of I.V. pre-meds, but once the phenergan coma kicks in, I won’t see much of anything!

Still waiting on word from a church group about an apartment.  I’m kind of surprised–in the past we’ve usually gotten called within a couple of days, a week at most.  It saddens me to know that there are that many people in need of housing for medical reasons, but I’m glad that there are things like this set up to help.  Hopefully we’ll get a call soon, or else I think I may go crazy in here!

Sadly, there’s not much else going on down here.  I feel like I’ve been away from home for sooo long, but it’s really only been a couple of weeks.  Things at school are going well now that there’s a long-term sub in for me, and while I’m glad that’s the case, it’s weird to think that everything continues on as normal when I’m down here.  That was something that was hard for me to comes to terms with my first time through treatment.  It’s not difficult this time, just a passing thought and still a somewhat strange feeling.  Comes with the territory, I suppose. 

Time for the treadmill in the workout room.  That’ll do me some good.  Adios for now.

-Steph

Posted by Stephanie  4pm CST  from the hotel room  Houston, TX

So, mom and I have survived Snowmageddon 2011 in Houston……which actually turned out not to be snow at all, but ice.  They were calling for sleet to start late last night and change to snow overnight, but when we woke this morning and mom looked outside, there was no snow and the car was covered in ice.  We’ve watched the news all day (mostly because they’ve preempted any other programming with constant coverage), and there have been reports of hundreds of accidents in the Houston area since early this morning.  The city has largely shut down, with schools releasing early yesterday (10 hours before any precipitation, go figure) and they were all closed today.  I know that Houston is far less prepared than say, back home in Ohio, to deal with something like this, but it’s seemed a bit of overkill to me.  Then again, based on the road problems they’ve had and the airports being shut down for part of the day, maybe not.

We did have to venture out earlier in the day to get bloodwork done, and found that all the roads between the hotel and the medical center (which is only a few blocks away) were completely clear and dry, so that’s good news.  It’s going to get mighty cold again tonight, so they’re saying the roads will refreeze, probably around the time that we’re headed back out to get my chemo bags switched.  I’m sure we’ll be fine, and tomorrow it’s finally supposed to get up above freezing and stay there, at least most of the time!

Chemo is still going fine.  I’ve had seven bag switches, so we’re halfway done with this round.  Still no fatigue, which is good, and my mental state is still fine (and hopefully will stay that way!).  I’m getting pretty stir crazy here in the hotel room.  It’s been too cold to go outside, and there’s not much to do around right now that doesn’t involve money.  I’m trying to entertain myself with books, tv and the computer, but the hours every day seem to stretch on endlessly.  That’s something that’s so frustrating about this situation right now–I feel like I have the energy to be doing stuff, but I’m unable to drive, and so far from home without anything to do!  I’ll keep praying that there’s a way to get this done at home, but it truly doesn’t seem feasible at this point.

I have had a couple of packages delivered down here, from church and some great friends, and that’s helped to lift my spirits.  Cupcakes, cookies and goodies like fuzzy socks bring a smile to my face.  Thank you to everyone who has sent encouraging thoughts and prayers our way.  Sammy and I really appreciate them!

Speaking of Sammy, I miss him.  The whole being apart thing during so much of my treatment royally sucks.  We’ve had a little bit of time on Skype this week, but his school schedule and my phenergan coma have made it difficult to get a lot lined up.  I’m so thankful for his strength through all this!

Alright, I’m off to walk on the treadmill in the workout room.  I’ve been trying to get in at least 20 minutes a day, a) because it’s good for me, b) it gives me something to do, and c) it will hopefully head off any steroid weight that might be thinking about making an appearance.  Have a great night everyone!

-Steph

Posted by Stephanie  3:30pm CST  from a hotel  Houston, TX

It’s been a few days since either Sammy or I posted, and I’m sorry for that.  I usually do my posts at night, but the way chemo has gone this first time, I’ve been at the hospital in the evenings, which hasn’t left much time for late evening posts!

Chemo is going well so far.  We got started with my first dose on Friday evening.  I was supposed to get hooked up at 4pm, but by the time they called me back and gave me premeds (steroids and anti-nausea drugs), it was after 7pm when I actually walked out the door with my chemo backpack.  It’s quite large–the height of a regular backpack, maybe not quite as wide (for you band people, it looks like a mini-bell kit bag), and pretty heavy when both fluid bags (one with the chemo and Mesna, one with just fluids and electrolytes) are full.  The backpack also houses two pumps (one for each bag) which weigh a pound or two a piece.  I have to go back to the hospital every 24 hours (so 7pm each night this round) to get those same two I.V. premeds and then have the empty bags switched out for full ones.  That whole process takes less than an hour, but usually ends up killing the rest of the night thanks to the anti-nausea med (phenergan) knocking me completely unconscious for several hours (which by then is bedtime!).  I’m hoping the next round we can get started earlier in the day so that my ‘phenergan coma’ can just be a mid-day nap and not something that ends my day at 7pm!

I’m thrilled to say that side effects to this point have been minimal.  Water tastes awful, which is to be expected, I’ve had a couple headaches, and I have this ‘raw’ feeling in my stomach more often than not.  I also generally just feel unwell, though it’s tough to actually pinpoint how.  However, that’s it, so I can’t really complain.  No nausea and vomiting (knock on wood), no fatigue yet (though I expect it’s coming) and no mouth sores.  So far, my numbers are behaving as well.  I have bloodwork scheduled three times a week right now (an electrolyte panel every time, and a CBC once a week) to keep an eye on levels such as my CO2, potassium, magnesium, etc.  The problem in the past was my kidney’s inability to hang onto bicarb (hence causing my CO2 levels to plummet), but this time it’s only my Phosphorous level that’s misbehaving.  It’s running quite a bit on the low side, so I’m on oral K-Phos tablets three times a day to correct the problem.

So, four doses down, 10 more to go this cycle.  Two straight weeks of continuous infusion seems like an eternity.  It might not be too bad if I had more to occupy my time, but it’s pretty uneventful around here.  I’d love to go for a walk, but it’s a bit chilly right now.  Yes, I know it’s not as cold as it is in Ohio, but it started at 70 degrees here today and dropped 35 degrees in the span of just 20 minutes according to the news.  So now it’s just barely above freezing, and actually could snow here towards the end of the week.  I’ll make sure not to leave the hotel that day until I absolutely have to–I think it’s fair to say that people down here might freak out about snow just a bit more than the people back home!

Things should pick up a bit once we’re out of this hotel room and somewhere with a little more room.  I don’t think either Sammy or I have talked much about the housing situation for us this time around.  When we were down here at the beginning of January, and then again last week, we stayed with our great friends Joe and Sarah.  They have a house just 15 minutes south of the medical center–it’s an easy drive, and they’ve been kind enough to offer us their home for the majority of our time down here.  However, they have several other houseguests around in the next couple of weeks, so for a little while, mom and I are at a hotel in the medical center.  We’ve got our name on the list for an apartment, because even if it’s just for a short time, the reduced cost of an apartment through the church apartment ministries is still significantly cheaper than even this extended stay hotel we’re in.  

I think that’s about it for big events.  I wish I had something a bit more exciting to share.  I think being stuck in this tiny hotel room is just causing me to feel pretty blah.  I’m hoping my body will start to adjust a bit better to the chemo so that I can get into some sort of routine.  The last thing I want is to be a giant bum down here!

Alright, I’m off for now–gonna take a trip to the store and figure out something for dinner before heading to the hospital for the chemo bag switch.  Hope everyone is staying warm and safe with all this snow and ice!  

-Steph

Posted by Sammy

1050pm CST from Houston

You know, I was hoping we were done with all this. It causes me stress. Obviously. I’ll settle down before too long but right now I find myself walking around and completely exasperated that this disease has shown back up to dump on us again. It’s really quite unnecessary. I find myself wondering how much is going to be asked of us to endure and beat this disease. How long will it take this time? Living a at least semi-normal life again was going along swimmingly. I’d much rather get back to doing that. But not yet. You know you’ve been in a fight for a long time when Dragonforce lyrics begin to really speak to you…its like we get away for a little bit then it comes back. Every year we have hope. There is talk of possibility, optimism, things seem to be going great, then without any warning, boom. Disappointment again. From the same thing, doing the same thing, being the same annoying problem it always has been…….wait….I’ve seen this before somewhere….

Yup. Thats it. Cancer is the Bengals of the medical world. One minute your going to contend for the AFC, the next…you’re looking at early draft picks. Every year. GO PACKERS!

Moving on. 

It’s been a trying week but wonderful friends make trying weeks better. I head home tomorrow for the the time being and for the time being, I mean a little bit. Concerts, contest prep, show choir fun, pep band, marching band back to texas and a sarcoma foundation retreat in a pear tree. Whew. I am excited about the last one though. I have been wanting to do more to fight back and this time I can’t just sit around and wait for that time. I have to make it happen. So Im going to the chapter leader retreat for the Sarcoma Foundation of America and hopefully will have some news after that on bringing some events to Ohio and info on how to sign up with that organization. Beyond that Im going back to the hills of Pennsylvania this summer for the Livestrong Challenge again. That event raised over 3 million dollars to fight cancer last year…I hope its more this year. Every time I am at this hospital I am surrounded by reminders of why I ride. I see Steph tethered to her new backpack and I am ready to go hit the hills. I need your help though…its time to start pledging. If everyone who reads this donates just $5 what could we do with that? What if some were able to do more? Anything you can donate goes directly to support those fighting cancer.

Here’s the link if you wish:

http://philly2011.livestrong.org/sammyminge

e

Off to Ohio tomorrow. Someone please turn the heat on up there

Sammy

Posted by Stephanie  9:30pm CST  from the Rawleys’  Pearland, TX

Yesterday was a looong day at the hospital.  Labs, then a consultation for CVC line placement–that was a hoot.  We went into a room with a nurse, who usually goes on and on about what the CVC line placement entails, and then you have to watch a video, blah blah blah.  This time, though, the nurse looked at the paperwork, then at us and said, “You’ve done this before?”  Yes, many times.  ”Do you want to watch the video?”  Not really.  ”Any questions?”  Nope.  And that was that.  Now that’s my kind of appointment.  :)

After that we headed up to the sarcoma center to find out the long-awaited verdict on chemo.  Once Dr. Benjamin finally came into the exam room, he wasted no time filling us in on the plan.  The winner is…..(drum roll please)….Ifosfamide!  Sammy totally called it, and I figured that’s what he’d do too, but I was still holding out hope for the lesser of the two evils.  Dr. Benjamin had said during my last checkup that he needed to confer with my thoracic surgeon, Dr. Swisher, and apparently he said it would be a lot easier to get at the lymph node surgically if it were smaller.  That pretty much finalized the decision.

Dr. Benny went on to remind us that this time he planned to give me the Ifex as an outpatient at a much slower rate over a long period of time.  I envisioned “longer period of time” to mean three or four days, but oh no, he informed us that it would be infused continuously over a period of two weeks.  TWO WEEKS.  Yeesh.  I’ll have a chemo “backpack” with a portable pump and a bag of Ifex mixed with Mesna (medication designed to protect my bladder) that I’ll have to get changed out once a day at the hospital.  After two weeks on, I’d have a week off (or two, if my body needed the extra recovery time) and then we’d start over again.  As for side effects, they should obviously be less severe than when I did high-dose Ifosfamide as an inpatient.  According to both Dr. B and my nurse, Mara, the most common things I’ll experience are quite a bit of fatigue, and the potential for ‘neurotoxicity’ (a.k.a. mental loopiness).  The cause for the mental instabilities (which could range from nightmares to full blown hallucinations, hooray) is a drop in the brain’s Albumin level.  I have experienced some loopy moments on Ifex in years past (anyone remember the Horseradish Trail incident?), and heard some great stories from nurses about other people as well.  It was easily resolved for me at the time by hanging a bag of Albumin with my next dose of chemo, but they won’t be giving it to me automatically with this outpatient regiment.  If I do experience any issues, they can hook up some Albumin on the second lumen of my CVC line, or give it to me orally, but he doesn’t want to give it to me unless absolutely necessary.  The less medications the better.  I shouldn’t experience too much nausea and vomiting, which to me is the most thrilling news of the day.  There’s not much worse than hurling your guts out day in and day out.  My counts will drop after each round, but Dr. Benjamin doesn’t anticipate it’ll be as bad as it has been in the past.  Oh, and I’ll lose my hair again.  Good thing I have a nicely shaped head.  I think I make a pretty hot bald chic, if I do say so myself.  :)

We’ll start with bloodwork three times a week to monitor electrolyte levels.  Ifex has caused me major issues in the past where my kidneys couldn’t hold on to bicarb (hence the 48 sodium bicarbonate by mouth I was on back in the day).  If that starts to be an issue, we’ll go to daily labs, and I may need to get an occasional bag of electrolyte infused fluids while at the hospital getting my bag changed out.

Because of the chance for neurotoxicity, I’m not supposed to drive during the two weeks I’m on chemo, and someone has to be with me at all times to watch for changes in my mental state.  I’m a little freaked out by that (am I going to mistake Joe and Sarah’s 8-month old daughter for a football or something?), but hopefully it’s one of those things that they have to tell me about but won’t really happen.

To just about every question I asked Dr. Benjamin (“How many rounds of chemo will you do?”, “When will surgery be?”, “Is this something I might be able to do at home?”), I got the same response: “We’ll just have to wait and see how this first round goes”.  That answer is a little frustrating, but I can’t blame him–this is just as much unchartered territory for him as it is for me, seeing as how I don’t ever follow the typical path for this disease.

I think that’s about the extent of what we learned at my appointment–I’m sure I’m missing something, but you get the idea.  I had my CVC line put in this morning.  It’s sub-clavian on the left side, just like it has been the last two times.  I don’t really mind the CVC line (although it’s mighty sore right now, since when they numb you for the insertion, they insert the needle INTO your clavicle bone.  Ow.), but it makes things like showering a huge pain.  This morning I stood in the shower until my fingers pruned up, just enjoying what would be my last shower without that line in.  From now on, anytime I want to shower, I’ll have to wrap that area in saran wrap and water proof tape.  I’ll also have the backpack to contend with, but I’m told I can just set it outside the shower.  It’ll take some getting used to, that’s for sure.

Chemo starts Friday afternoon.  Tomorrow, though, we have nothing, and after two days of many hours at the hospital, Sammy and I are planning on being slugs.  It’s gonna be great.  I’m battling a cold (or the flu, even, since I’ve had chills, body aches and a low grade fever) that I caught sometime in Vegas last week, and I’m hoping it gets it’s sorry tail out of here so that I can have at least one day of feeling good before I start on something that will make me feel bad.

I’m headed to bed.  I had to resort to pulling out a vicodin tonight for my shoulder–the tylenol just wasn’t cutting it–so hopefully that helps me sleep better than I have been lately.  We should be able to get into a really regular posting routine now that things are settling down into a pattern, and I look forward to being able to write more than just the medical facts.  There’s a lot of thoughts and feelings running around in this crazy head of mine!  Goodnight folks.

-Steph