Posted by Stephanie  7:00pm CST  from the apartment  Houston, TX

Well, I wish I could be posting on here to chat about how the rest of the last chemo round went, or our vacation to Myrtle Beach, or something else warm and fuzzy, but alas, I cannot.  First and foremost, I must share the news from my appointment with Dr. Benjamin this morning, and sadly, it isn’t great.

If you’ll recall, the last CT scan I had (which was mid-May) showed significant shrinkage in both the lymph node and lung nodule.  That positive response was the driving force behind the decision to do two additional rounds of chemo (#5 and 6).  This morning’s CT was just supposed to be a check on the progress of things before starting the final pre-surgery chemo round, but the results were not what we expected.  Turns out my two current “spots” are now larger than they were in January when they were initially discovered.  Yes, I said larger.  How did this happen when the last scan showed such great response?  Well, Dr. Benjamin theorizes that either A) I’ve developed a resistance to Ifosfamide or more likely B) the additional time between rounds that’s been needed for my immune system to recover has allowed the tumors to get ahead of the chemo and grow.  What were supposed to be three week chemo rounds became much less effective when doubled to six weeks, and with all that extra time, the cancer has been able to fight back.

That news sucks, plain and simple.  The purpose of doing so much chemo was to shrink/kill the tumors before surgery so that they would be easier to take out and the procedure could hopefully be less invasive.  However, that’s now a moot point, seeing as how these spots have not only reversed all progress in size that we made, but have actually grown slightly beyond that.  SO frustrating.  Dr. Benjamin said there was no way to know this was going to happen–the doctors I saw during his absence had to go on the information we had from the last CT scan, and based on that, the treatment was working beautifully, and it made perfect sense to continue chemo.  It’s one of those times I wish I knew whether a certain path was going to work out in advance, so that I could definitively make the right call.  But, life doesn’t work that way, and the situation is what it is.  All we can do is adjust the plan and continue to move forward.

If there’s any good news to come out of today’s appointment, it’s that the lymph node appears to be much more fluid-filled than it was previously.  My particular sub-type of osteosarcoma has a hemorrhagic component to it, meaning the tumors often contain lots of blood and/or fluid.  The lymph node tumor has both a fluid section and solid part, and on today’s scan it looks as though the solid tumor segment is smaller, and the fluid part larger.  We won’t be able to tell exactly what’s going on in there until it comes out at surgery, but it could be the one positive to come out of today’s appointment.

So, since chemo is no longer an effective strategy, Dr. B is changing the plan and opting for surgery now.  Ang (who’s down here with me right now) and I are scheduled to meet with my chest surgeon, Dr. Swisher, tomorrow morning for my consultation.  We’ll also find out the date of surgery (most likely within the next week and a half or so).  Dr. Swisher has done all three of my previous chest surgeries and is very familiar with my case, which is a big relief to me.  Usually I go into these surgery consultations knowing the general plan, but this time around it’s a lot trickier because the two spots are quite far apart.  Dr. Benjamin couldn’t even offer a guess as to whether Dr. Swisher will go in through the front or the back.  There’s also a question of whether he’ll be able to get both spots at the same time, or if there will need to be two separate surgeries (ugh).  I should find out the answers to all that tomorrow, but in the meantime my brain is going over every possible scenario.

That’s the latest.  On one hand, I’m glad to be doing surgery now.  I want to get those spots out ASAP (especially since they’re now growing again), and with surgery happening now, I could potentially be done with all of treatment sooner.  On the other hand, I know this is not the best scenario for surgery because of these bigger tumors, and with the lymph node already being in a difficult and precarious location, I’m anxious about what’s ahead of me.  I’m hoping that getting all the info will help me wrap my brain around it and feel a little more confident about the situation.

Thanks to everyone who has already learned of today’s news and offered their support, thoughts and prayers.  Sammy and I (and our families) appreciate it sooo very much.  I’ll be back on tomorrow with an update after my surgery consultation.

-Steph

Posted by Sammy 10pm, Myrtle Beach SC

Well hello there! Where to begin? So I kind of (facebook aside) went into kind of an online recluse mode for a while. Felt so busy this past spring that I stopped with the online video games and really have used my computer less as far as anything other than checking FB and work. Anyhoo…I…Have…Returned. Such as I am. Im enjoying the last night of our vacation with my family in Myrtle Beach. Listening to the news guy carry on about the heat. Maybe Im getting old but I remember my parents telling me to go outside when it was hot, not to hide in the AC. But whatever. Things continue to go well with Steph’s treatments. She sees Dr. B on monday so I’d expect an update for everyone on here shortly after that. I got in some nice relaxation time and rides along the coast this week. Next week starts band camp, judging season, and the lead in to serious final training for this years Livestrong Challenge. 100 more miles of putting the Hilly in Philly. Yeah i know how dorky that sounds but it is soooo accurate. Think I’m kidding?

See that nice picturesque view? Now see those nice really big hills? Yeah it would be those hills I am referring to.

So Ill spend my 31st birthday (yes Im old now) riding 100 miles over 8,300 feet of climbing elevation and hopefully not getting rained on again. This is, of course as always, to raise funds for the Livestrong and in support of everyone fighting cancer and for their programs that offer support and advocacy around the world. If you can, please join me. You don’t have to ride or come to Philly (though the more the merrier ) Just donate whatever you are comfortable with. All money goes directly to Livestrong and makes a difference.

Here’s the link:

http://philly2011.livestrong.org/sammyminge

Thanks again and Ohio, we’ll see you tomorrow!

Sammy

Posted by Stephanie  9:30am CST  from the apartment, Houston, TX

Okay, so it’s been a long time.  A really long time.  I know, I know, I’m sorry.  Believe it or not, I’ve been so busy in the last few weeks (like, coming home at the end of the day and collapsing kind of busy) that I just haven’t had a block of a couple of hours to sit down and do a post.  Well, that, and I went through a bit of a ‘bummed-out, don’t really feel like I can stay positive and say happy things’ kind of spell.  Anyway, let’s get caught up.

My last post left off with me still waiting to start chemo round number four.  After four postponements, we were finally able to get that round started with lucky try #5 on April 30th.  That whole round went exactly as the ones before it–few side effects and no real issues.  The hospital did have a shortage of sodium acetate (the additive that goes into my fluid bag to help regulate my C02 level), so I had to start taking oral sodium bicarbonate partway through the round to compensate.  I already take that supplement in between rounds, but Dr. B had always wanted to control it via I.V. fluids during the round so that the oral dosage wouldn’t get out of control.  Thanks to the shortage, my oral dosage had to be upped to 56 soda bicarb pills a day.  56!!

So anyway, right at the end of round number four I was scheduled for scans/restaging.  I had a chest CT and my normal battery of bloodwork and a chest x-ray before seeing Dr. Park, who was taking on Dr. Benjamin’s patients that day.  Dr. Park had to get caught up on my case history (and a weird one it is), so it took awhile before she actually came into the exam room.  Right away we got great news–the scans showed significant shrinkage in both the lung nodule (“almost nonexistent” were the words used for that one) and the lymph node.  I filled her in on the multiple postponements and excessive length of time between the last two rounds so that we could have a real discussion about what to do next.  After all, this checkup was supposed to be the time where the ‘surgery vs. more chemo’ decision was to be made.  I had hoped that Dr. Benjamin (still out on recovery from his own surgery) might have been consulted over this since it was such a pivotal point in treatment, but it turns out they’re not contacting him except in emergency situations, so it was up to Dr. Park and Kathy, my P.A. to make the call.  Dr. Park expressed her concern over the length of time between rounds (double the usual amount) but ultimately decided that since the chemo was working so well, we needed to try for another couple of rounds before thinking about surgery.  I know that had been Dr. B’s thoughts as well the last time I saw him, but I wasn’t sure if the fact that my immune system was taking such a beating would change things. 

I wasn’t quite sure how to feel when mom and I left that appointment.  On one hand, I’m beyond thrilled that the scans show such great response.  On the other, I really wish we could just get on with things.  Two more rounds of chemo at six weeks per round (ugh) means three more months.  That’s ALL summer on chemo!  I guess I shouldn’t complain–the situation certainly could be way worse.

Mom and I hopped in the car as soon as my extra days of I.V. fluids were finished and drove home around the 20th of May.  That two-day drive isn’t a ton of fun (as you can imagine), but it was certainly the cheaper and more flexible of our travel options.  I was so excited to spend just over two weeks at home (certainly beats the last trip of 2 1/2 days), but wow, was it a whirlwind the entire time!  If I wasn’t out visiting friends or family, I was at the house trying my hardest to help Sammy tackle some of the chores and projects that needed to be done.  I for sure pushed myself beyond my limit and was completely worn out by the end of every day, but wow, was it nice to be home!  Just for those couple of weeks, we can almost pretend like things are normal–it’s just long enough to get back into the swing of a routine, and then BOOM, it’s time to leave again.

I did have bloodwork done three times a week while I was home in order to monitor my counts.  Had they come back up to where I could start another round early, I had instructions to head back to Houston.  Otherwise, I could stay until our pre-agreed upon return date of June 9th.  As I expected, my platelets and ANC (absolute neutrophil count–the part of my white count they use to determine when I’ve recovered) bottomed out, started to come up, and then leveled off and stayed stagnant for more than a week.  It wasn’t until Sammy and I had driven back to Houston and saw yet another doctor this past Thursday that my counts finally bounced back.  Woot.  Since the hospital had an opening in the schedule that very evening, I got started with chemo round number five two days ago, and we’re on our way!

So excited that Sammy is able to come down with me for a little while.  Now that he’s done with school, he’s got the time to relax and chill in Houston.  We’ve got plans to visit with friends, Sammy’s gonna play a little golf, and we’ve even got a day trip today planned to Galveston.  Once he has to leave in 10 days or so, Ang will come stay with me for the rest of the round, and then since there’s such a long period of time needed between rounds to recover, we’ll probably come home again.  For the time being, mom is staying at home in Ohio to be with grandpa and get in some time at work.

Okay, so that’s the super short, Reader’s Digest, in-a-nutshell version of the past six weeks.  I promise it won’t be so long next time til one of us posts.  Hope everyone has a great weekend (it’s gonna be HOT here!).  Adios for now.

-Steph

Posted by Stephanie  3:00pm CST  from the apartment  Houston, TX

Let me start by wishing everyone a Happy Easter!  How I wish I were back home to be spending the holiday at church and with family and friends.  Instead, it’s just mom and I having our own little celebration down here.  We’ll have a great meal and a good day, but we’re missing being at home!

As I mentioned in my last post, I was due to start chemo this morning.  Really, what celebrates the resurrection of Jesus better than getting hooked up to chemo?    Sammy wondered if maybe they’d give me jelly beans with my chemo.  If they don’t, then they should!  Anyways, getting hooked up today was the plan, but my bloodwork this past Friday showed my platelets were still not high enough to start chemo.  In fact, they were going down!  Huh?!  After rising to 99k a week earlier at my Dr. Benny appointment and then stalling out (which is part of what kept me from starting on the original chemo date), they were down to 85 on Friday.  I certainly didn’t see that one coming!  I thought an extra week would’ve been plenty of time for them to nudge up over the 100k mark.  Double dipping platelets (where they come up, then drop again) is not a new thing with chemo regiments I’ve been on–they’ve done that in years past.  However, it wasn’t expected with this regiment, especially since my counts don’t drop much in the first place.  You’d think that if my immune system doesn’t get terribly suppressed by the chemo, it wouldn’t take much for it to bounce back, right?  Eh, I’m sure there’s flaw to that logic.  My sluggish platelets and white count are proof of that, I suppose.

There was a bit of scrambling on Friday to figure out what to do about chemo Sunday and my dropping platelets.  My medical team is not in clinic on Fridays, so there wasn’t anyone easily reachable who could lay out a plan.  In fact, Dr. Benjamin is going to be out for a couple of months due to having surgery himself!  Instead of trying to reach another doctor who wasn’t yet familiar with my case, the triage nurse called my P.A. Kathy.  At first there was talk of still aiming for Sunday, but really, there was not much of a chance of my platelets recovering in a day and a half, so she made the call to postpone chemo for a second time.  We’ll try again for Tuesday.  Hopefully that’ll be enough time for my platelets to get their act together, though I’m not terribly hopeful.  I’ll have bloodwork tomorrow morning to see how we’re doing.

The frustrating part is that there is no easy solution for low platelets.  I don’t qualify for a transfusion–they’ve got to be below 10k for that.  And besides, that would be a temporary fix.  True, it might let me start the next round, but there’s still an underlying reason for my platelets to be slow in rebounding, and that will still be the case after a transfusion.  There was a drug study I enrolled in after my liver surgery in 2008 (when I was on Adriamycin/DTIC) for a medication called Nplate.  It’s a platelet booster usually used for ITP, a non-chemo/cancer related condition that causes low platelet count.  If my platelets aren’t up tomorrow, I’ll inquire about that again.

Looks it’s not just my platelets that are sluggish to rebound.  Even with five days of Leukine injections, my white count on Friday was only 3.7, still below normal.  If there’s one good thing, it’s that I didn’t experience any of the expected side effects that go with it–achiness, fatigue, even fever and chills. 

I’m obviously not a doctor, but if parts of my immune system are this slow to recover, I’m thinking I may not be able to continue with as many rounds of chemo as planned.  Today is five weeks since the start of the last round.  That means we’re moving into the sixth week between rounds with a chemo regiment that is meant to be done every three weeks.  If we continue with so much time between rounds, I don’t know if that lessens the effectiveness, and plus, I can’t imagine my medical team moving forward with a regiment that could eventually cause my immune system to go kaput for good.  I know they’ll work to get this next round in, I just don’t know if we’ll have to alter the plan and not do those two extra rounds after all.  I always thought it would be problems with my C02 that would put a halt to things, not white count or platelets!  I guess I probably should stop speculating.  I might be completely wrong, they could find a solution to the problem, and things could go on swimmingly.  Who knows?  As usual, just gotta play things by ear.

The plan is for mom and I to come home after this next round.  Don’t know when that’ll be yet, but by the time it finally happens, it will have been at least two months since my last visit home.  The big question is, will we know when it’s safe to travel home early enough to buy plane tickets that don’t cost an arm and a leg?  If not, looks like we’ll be driving (provided we’d have a week or longer for the trip).  It’d be nice if we could know what would need to be done to help my counts after this next round, but I won’t hold my breath.

That’s about it for the medical end of things.  Mom and I have actually managed to stay entertained this week by running errands, having a couple of meals out and seeing a movie.  Right now, the apartment smells like a mix of ham and cloves, mac and cheese and sweet potato goodness as we prepare our Easter feast.  It’s going to be so good!  I hope everyone has a blessed Easter and a good start to the week.  I think Sammy’s planning to post soon with the happenings back home, including the neverending rain and our basement flooding adventures!  Adios for now.

-Steph

Posted by Stephanie  11:00am CST  from the apartment  Houston, TX

I lead such an exciting life right now.  Okay, not really.  Not even close.  BUT, there are lots of things going on, some good, some not so good.  Let’s start with a medical update.

I saw Dr. Benjamin last Thursday for a quick, in-between rounds check-in.  I’m not due for scans till after the next round, but I did have bloodwork and a chest x-ray before the appointment.  I was due to start another round of chemo just a day or two after that appointment, but my platelets were only 99k on Thursday, and they’re supposed to be at least 100k.  I know, I know, not a huge difference, but he wanted to wait a few extra days so that they could get a bit above 100.  My platelets have been dropping lower after each round (though nowhere near the low they used to reach), and the thought was that if they were higher to start with, they’d have a bit of cushion room for the next round.  The rest of my counts looked okay–my C02 dropped quite a bit after coming off I.V. fluids (as we knew they would) so I had to up my oral soda bicarb intake to 32 tablets a day.  I also continue to take potassium and phosphorous.  Yum.  Aside from the counts issue, though, the doctor says I’m tolerating this treatment beautifully.  Hooray.

During the appointment I asked him how the chest x-ray looked, because even though it’s obviously not as detailed as a CT scan, sometimes you can still see what’s happening with spots of interest.  Though he doesn’t like to rely on a chest x-ray for definitive information, Dr. B did say he thought he could see some change (for the better).  Certainly the scans after the next round will give us the answers he needs to decide whether we do additional chemo or plan for surgery at that point.  He did say that he was leaning toward doing two additional rounds after those scans, since it looked as though it was starting to work.

So, I left the appointment with labs on the schedule for Sunday and chemo tentatively planned to start this afternoon.  Dr. B wanted me to send him a reminder e-mail after my labs yesterday so he could take a look at them and make sure we were good to go.  I did, and received a surprising e-mail back a short time later saying that chemo for today was a no-go!  My platelets are actually sitting at 98–down from what they were a few days ago!  In addition, my white count, which was down somewhat last Thursday despite the Neupogen injections, has failed to come back up.  Dr. Benjamin feels as though I need another five days worth of immune-boosting injections, and is opting for Leukine, which works similarly to Neulasta or Neupogen, but works on more than one component of the white blood cell, hopefully leading to an increase in my white count that will hold.  The plan now is to do those shots M-F, take Saturday off (must have 24 hours off before chemo to avoid interaction), then chemo starting next Sunday.  Oof.  Nearly a whole week postponed.  Don’t get me wrong, I love the thought of being off the backpack for more time, but I hate the thought of putting off the start of treatment, because it just prolongs my time down here.  As it is, if we really do end up doing a total of six chemo rounds before surgery, each a month or so long, we’re looking at surgery not until the latter half of July.  Then with recovery time and the possibility of post-op chemo, I’ll be on treatment and down here in Houston through the summer and into the fall.  That’s a long time.  I’m trying not to look that far ahead, because that’s enough to depress anyone.  I’ll just take it one cycle at a time.

I wish it were possible to use this extra time off to come home, considering I’ve only had a whopping THREE days at home since January, but sadly it’s not an option.  Buying a plane ticket last minute is nearly $600, and if we drove two days home and two days back, there’d only be one day to visit.  It’s been our plan for awhile to come home after this next round, and I hope that’s still going to be an option.  The fact that my counts are taking longer to recover and the need for these extra injections, though, make it tricky to know what’s going to happen following the next round.  Sometimes it’s nearly impossible to know when it’s safe to head home, and my medical team isn’t big on trying to predict those things in advance.  One of the downfalls of being treated so far from home!

In other news, mom is back down here with me.  She flew in Friday morning.  Grandpa continues to be stable but weak, and is settling in at the extended care facility.  I know it was hard for her to leave him, but since it looks as though he’ll continue as is for the foreseeable future, she felt as though she could return to Houston.  My ten days of being down here alone were fine–I actually found lots to do and several different people to hang with–but it’s nice to have someone with me again.  I wish, of course, that Sammy could be down here more than he is.  Summer is coming soon, and then he’ll be able to visit with more frequency.

It’s beautiful down here.  Sunny, warm, breezy….I find myself walking outside everyday and saying, “Wow, what a nice day!”.  If it could just stay like this, that would be wonderful.  It’s forecast to get even warmer this week–up to 90 already!–and for mid-April, that might be a bit much.  July, sure, I’d expect that, but it’s a bit too soon to be sweltering.  It’d be great if I could beat the heat with a nice dip in one of the apartment pools, but oh wait, this CVC line prevents that!  Boo.

Alright, enough rambling for now.  Have a great start to the week!

-Steph

Posted by Stephanie  10pm CST  from the apartment  Houston, TX

Been quite awhile since a post went up.  Between keeping tabs on what was going on at home and wanting to spend as much time with Sammy as possible while he was here, I didn’t get around to sitting down to compose anything.  That being said, let’s get to it!

Sammy and I had a great time while he was here over spring break.  We went for some tasty dinners (lots of tex-mex, of course), hung with Joe and Sarah, but didn’t do anything much out and about.  We’ve spent so much time in Houston that the novelty of a lot of the places and activities around the city has worn off.  It was much more about just getting time together, since that is a rare commodity nowadays.

Round three of chemo went swimmingly.  No problems, just the same minor side effects to battle, and my C02 even behaved better this time around.  No extra giant syringe pushes or separate infusions of soda bicarb necessary, or even adjustments to what was in my fluids.  I’m sure that’s because Dr. Benjamin started the round by frontloading my fluids with the same amount of sodium acetate that he ended the last round with.  Whatever the reason for my electrolytes playing nice, I’ll take it.  I got the last dose of chemo Saturday, and started with the five days of extra fluids Sunday.  That means I’ll get unhooked from the backpack on Friday afternoon, and I can’t wait!  I’m very much looking forward to a week away from my constant companion, Myrtle.  I hope she doesn’t take offense to that.  :)  

I think I mentioned that for this round, I had a morning hookup appointment time.  After a couple of days, I wasn’t sure whether I was a fan of the new time frame.  Well, all it took was a few long waits in getting called back and delays in the pharmacy before it was mid/late afternoon when my hookup was occurring.  That meant I was napping from about 4-6 instead of 11-1.  It actually worked out okay no matter what time frame we dealt with, and I really enjoyed having evenings free.  It gave me the chance to have dinner with friends and even attend a Houston area Arbonne training.  That was AWESOME.  So nice to be back in that dynamic environment and meet some more people in the area.  It was a much-needed injection of energy and good-vibes for me, and hopefully I’ll get out and about to do some stuff with the people I’m meeting.

Granda update: despite a gloomy initial prognosis, grandpa is holding his own and has amazingly been moved out of the hospital and into an extended care facility.  Mom continues to be home with him for the time being, since I’m not currently on chemo and don’t have to have anyone with me.  That’s right, I’m fending for myself for about ten days down here until it’s time to start the next round.  At that point, someone, either mom or Sammy will come back down.

In the two and a half days I’ve been down here alone, I’ve managed to keep myself occupied.  A lot of that was due to my marathon tax-prep work, but I also had that Arbonne meeting, a dressing change plus all the normal hospital activity, and some grocery shopping to fill the time.  Starting tomorrow, well, there’s not a lot outside of my daily hospital trips happening.  So, we’ll see how long it takes me to start going stir crazy!

It’s late, and I’m super-achy from the Neupogen injections, so it’s bedtime for me.  Nighty night folks.

-Steph

Posted by Stephanie  9:30pm CST  from the apartment  Houston, TX

Well, it’s been a crappy day.  There’s just no other way to put it.  Surprisingly, it has very little to do with me–I’m just fine, plugging along, officially halfway through the chemo part of this round.  No, the problems are happening at home, and today at least, it seems like the phrase, “When it rains, it pours” fits pretty well.

My 93-year old grandfather, who I know I’ve mentioned from time to time in posts, is in the hospital for the second time in two weeks.  The first time it was for a bad UTI, this time for pneumonia, and though a chest x-ray yesterday showed it was clearing up, he took a turn for the worse during the night.  Weakness, problem keeping his oxygen stats up, shortness of breath, fluid in the lungs….I woke up at about 3:30 to hear mom on the phone with the nurse, learning all this.  What followed was a middle of the night rush to get her plane ticket changed (she was already headed home in a few days since Sammy was coming down for his spring break), throw a suitcase together, and get her to the airport for a 7am flight.  Updates throughout the day have him stable in ICU and resting comfortably, but he’s frail, and the doctors think he’s suffering not from complications directly related to the pneumonia, but from heart failure.  It’s gonna be a rough go, but I’m so thankful mom was able to get home where she was needed.

Mom leaving early meant we had to juggle Sammy’s travel schedule as well, since I’m technically not supposed to be down here on my own.  After 2 1/2 rounds of this regiment, I have yet to experience any mental “loopiness” side effects (which is one of the primary reasons I’m not supposed to drive myself), so, we’re not really worried about that, and I drove mom up to the airport this morning.  The other reason for not driving is because I receive those pre-medications that make me drowsy every day with chemo.  That one’s a little harder to get around, so Sammy’s headed down here first thing tomorrow morning.

I’m certainly not complaining about having the Samster around a couple of extra days, but he was going to use the first couple days of break before heading down to get some stuff done around the house.  One of those things was laundry, but after starting the washer and coming back later to throw the load in the dryer, he discovered water allllll over the laundry room and spilling into the two small storage rooms next to it (one of which is carpeted).  Greeeat.  He had to pull out the shop vac, empty out those rooms and go to work trying to suck up all that water.  I’m gonna have my dad look at it when he comes to check on the cat–hopefully it’s a minor leak or plugged drainage tube.  I’d really hate to have to buy another washer right now!

So, between things with grandpa, malfunctioning appliances and being alone here for the day with my thoughts, well, it’s been a little rough.  Sammy and I are both starting to feel the strain that comes with doing this for the fifth time…..apart, and it sucks.  It’s such a different experience for each of us.  No one can ever know what it’s like to be a cancer patient unless you’ve lived it yourself–not even a caregiver or spouse who’s been through it with you.  And the stress and toll of a caregiver is completely different–Sammy gets to keep going with work, and be home, but he’s there alone, and just like me, his life is on pause.  We spent quite awhile talking about it tonight, and I just wish I could cheer him up.  I’m hoping the week down here will give him a chance to unwind and relax.  I’m sure he’s gonna wanna do a post with some thoughts soon.

Here’s to hoping the rest of the weekend is a little brighter!  I’m missing everyone at home–thanks for keeping in touch.

-Steph–

Posted by Stephanie  10:30 CST  from the apartment  Houston, TX

I’ve had several people contact me, anxious to know about the appointment last week with Dr. Benjamin.  It’s been soooo crazy non-stop since that appointment last week, and this is the first chance I’ve had to sit down and compose a post.  Here’s the scoop.

The scans from Monday’s appointment showed that the lymph node and lung nodule are ‘stable’ (a.k.a. the same size).  Dr. B theorizes that since my last scan was at the beginning of January, but I didn’t start chemo till close to the end of that month, that those spots probably grew in size, but are now turning the corner and starting to respond to the treatment.  Therefore, they appear the same size on both sets of scans.  No way to know that for sure, since we don’t have any proof of what happened between the two sets of scans, but either way Dr. B is pleased because there’s no growth.  He thinks we may see more shrinkage of the spots as we go through the next couple of rounds.  Not the greatest news, but not bad news either.  I’ll take it.

The rest of the appointment was spent discussing my C02 issue.  While it’s not as bad as it was on high-dose, inpatient Ifosfamide, it’s headed in that direction, and my medical team is working to keep me from having to stop treatment because of it like we had to in the past.  It’s under control so far thanks to massive amounts of sodium acetate in my fluids, plus the extra doses occasionally, and I’ve only had to take oral soda bicarb tablets when I’ve been off the fluids.  My favorite Dr. B quote from Monday’s appointment was “Your kidneys have holes in them.  They’re like swiss cheese.”.  Perfect.  I have a little “chat” with my kidneys everyday, just asking them to hold out long enough to kick this for good.

I flew home Tuesday afternoon for a quick, three day trip.  What a whirlwind.  Hours upon hours spent compiling tax information for both my medical deductions and my Arbonne business from an endless number of sources around the house and online.  Didn’t get much sleep, but I did get the chance to see a couple of people, sleep in my own bed, and spend some much needed time snuggling with the cat.  Any visit home, no matter how short, is good for the soul, and I feel boosted coming back here and ready to tackle a few more weeks.

I arrived back in Houston Friday evening, and had labs Saturday morning to see if I was ready for chemo Sunday morning.  Bloodwork looked good for the most part, but my hemoglobin had slightly dropped.  At 8.7, it was still far above where they would normally transfuse, but since it hasn’t been rebounding after each round like the rest of my counts, Dr. Benjamin wanted me to get some blood so that when it continued dropping during this round, I didn’t get into trouble.  The last week or so, I’ve been symptomatic–tachycardic (fast heart rate) with very little exertion, short of breath, and even my resting heart rate is around 94-96.  So, mom and I spent most of Saturday (five hours) at the hospital Saturday getting two units of blood.  The good news is that my hemoglobin today was 11.6, which has really made a difference in how I feel.

Got hooked up for round three of chemo this morning.  My first two rounds have been evening appointments, so we’ll see how I enjoy a morning appointment.  I think it’ll have it’s pros and cons.  Pros: won’t have to come to the hospital twice a day on bloodwork days and can get it all done at once; will have evenings free to have dinner with Joe and Sarah or attend Arbonne trainings down here.  Cons: that backpack is heavy ALL day (when it was at night, I’d sleep and the backpack would be so much lighter when I woke up); naptime from the phenergan wiped out about 4 hours of my morning/afternoon and I was pretty groggy the rest of the day.  So far, I’m feeling fine.  Oh, and my backpack has been given a name.  Ang and I discussed some when I was here, but it was finally settled upon later by my friend Jodi that my backpack should be called ‘Myrtle’.  I love it.  Everyone also thinks it needs some bling.  I have a big yellow pin that says “Cancer Sucks” on there, but I’ve got to look for some other stuff.  Like streamers.  :)

Mom and I took a walk late this afternoon, like we usually do.  It was a beautiful day, with lots of people out and about around the apartment complex.  I had a moment on that walk (and thankfully these moments are now few and far between) where mom and I passed a young couple walking with a dog and a stroller with their baby.  The first thing to pop into my head was, “That’s supposed to be me.  That’s where I’M supposed to be in life right now.”  It hit me pretty hard just for a minute, and then I pushed it out of my head.  I try really hard not to get bogged down by stuff like that.    I understand that my life for the last few years, and right now, needs to be about me getting well.  It hasn’t followed the path I had planned out.  That was really hard for me to accept when I was sick the first time, but by now, I accept that I have to go with the flow.  And that’s okay, because it’s helped shaped me into who I am.  I know once this is all behind me, I’ll be a stronger, better person because of this, so I don’t let myself get too upset by what we don’t have yet.  ”Woe is me” doesn’t get me anywhere.  Sammy and I have talked many a time about how by this point, after five years, we almost feel ‘numb’ by this point.  It sucks to get the news that I have to do this again, but it doesn’t phase us much.  We just go into fight mode, buckle down, and do what needs to be done.  We compartmentalize things, to a certain point, because if we allowed ourselves to really sink into the overwhelming thought and feelings of all this, we’d probably go nuts.  :)  That’s not to say I never get upset or am never affected by things–I just try not to dwell on it and make the choice to be positive instead.  It’s a good thing.

Alright, time for bed.  Gotta be up early for labs again, then chemo bag changeout.  Nighty night all.

-Steph

Posted by Stephanie  10:30pm CST  from the apartment  Houston, TX

My absence from posting was longer than I planned…..I didn’t realize until I logged on that it was two weeks ago when I was on last!  My apologies.  I’ve been a busy gal!

Ang was here for a week over her spring break.  I only get to see her a few times of year, so I was super excited for the extended time together.  She’s been to Houston numerous times over the years, but mostly for just a couple days surrounding my surgeries.  I know she enjoyed not having to spend all her time this visit in the hospital staring at me unconscious.  :)  We had a great time, although we didn’t do too many things–a little shopping, some great dinners out, trips to the hospital, etc.  Mostly we just hung out and relaxed.

I finished the chemo part of round 2 on Tuesday. However, Dr. Benjamin ordered not three extra days of I.V. fluids (like last round), but five days.  FIVE extra days, oof.  My body needs all the additives in the fluids to get my electrolytes back in balance from the time on chemo.  It’s been rougher this second round to keep the main culprit, my C02, where it needs to be.  The amount of sodium acetate in my fluids had to be increased several times, plus every other day I was getting extra pushes (giant syringes) of soda bicarb or even bags of it that had to be infused over a couple of hours.  My medical team is doing everything they can to keep my body working so this treatment can do it’s job!  The last bag of these extra fluids got hooked up tonight, so tomorrow around dinner time, after 20 continuous days, I’ll be free of this backpack!!!  While that is quite the cause for celebration, it also means we’ll have to take drastic measures to keep my C02 up with just oral medication.  I’m dreading how many he’ll suggest….

Monday I have the normal battery of scans (bloodwork, chest x-ray, CT scans) and see Dr. Benjamin to find out if this regiment is working.  I’m starting to get nervous about it.  On one hand, Ifosfamide has always worked for me, but on the other, this is such a different way of administering it….Dr. B isn’t even sure what to think yet.  I can only pray it’s doing it’s usual knock-out job.

After the nail-biting, exhausting adventures of this coming Monday, I’ll be flying home Tuesday for just a couple of days.  I really wanted to find the time to get home for a quick visit A) because it’s been 7 weeks since I’ve been home, and B) to take care of tax stuff, which can be rather extensive with all my medical expenses and my Arbonne business.  I can’t wait to sleep in my own bed, with my own cat, see my husband and hang out with my friends.  It’ll be a much needed boost to my spirits!

Alright, gonna go to bed.  I’ve felt a little puny today–achy from the Nuepogen injections, tired, and running a low-grade fever.  It’s just because my counts are low, and it’s certainly NOTHING in comparison to side effects in the past, but it was enough to keep me sacked out on the couch all day.  Night all!

-Steph

Posted by Stephanie  3:00pm CST  from the apartment  Houston, TX

Sammy’s done the last couple of posts, so I figure it’s time to get back on here for an update from this end of things!

Chemo round 2 was able to start Tuesday, as was (tentatively) planned after my appointment with Dr. Benjamin.  My bloodwork Monday looked great.  White count, platelets and hemoglobin were well within normal range, and all my electrolytes had rallied nicely.  Guess my body just needed a few extra days to get with the program.  Things this round are going well so far, about like last time.  Same weird taste with water, same strange stomach/esophagus thing happening.  Still no nausea/vomiting (yay!) or extreme fatigue.  Overall, I can’t complain.  I did have labs again both Wednesday and Friday–still looking good with electrolytes, but my white count and hemoglobin are already falling, much earlier than last round.  It’ll be interesting to see how that looks when I have them drawn again this week.

Tonight is bag number 6 of 14.  My backpack and I are co-existing peacefully, although I can’t wait to be rid of it again.  It feels like this round is going both slower and faster than last round.  Slower in that I feel like we’ll never get to that 14th day with these bag changes, but quicker in how each day moves.  I think being in the apartment and having all this extra room helps to add some variety so it doesn’t feel like it did in that tiny hotel room!  Mom and I get in at least a mile walk around the apartment complex everyday, and reading, time on the computer and working on Arbonne helps fill in the hours of the day.  I had hoped to have an earlier hookup time this round, so that my evenings weren’t cut ridiculously short by the dreaded phenergan coma, but since we had to wait and see what Monday’s labs looked like, it was once again an evening appointment time we were given.  I get better every day about fighting off that coma, but even if I can last a couple of hours after getting home from the hospital, I eventually have to throw in the towel, and I’m usually climbing in bed to collapse by 10pm.  

The weather here is gorgeous.  Today, for example, it’s 80 degrees and sunny!  No matter how much time I’ve spent down here, I don’t think I’ll ever get used to temperatures like that in February.  Crazy.  The Houston Rodeo is also gearing up to start this week.  It’s apparently the largest rodeo in the nation, and it always draws a huge crowd.  I’ve been down here at least a couple of times when it’s been going on, but I’ve never been.  I’ll be honest, it scares me a little.  Cowboy boots and ropin’ cattle are not me.  But, everyone says I’ve got to go.  My sister, Angela, is coming down next week to spend her spring break with me, and we may have to venture out and brave it.  Bound to be some good people watching…..and food.  :)

Alright, adios for now.  Keep those e-mails, notes and phone calls coming–it really helps brighten my day to hear from people back home!

-Steph