Posted by Stephanie  9:00pm CST  from the new apartment  Houston, TX

Greetings from Texas!  Sammy and I arrived on Monday afternoon (he by car, and I by plane), and we’ve barely had a free moment since.  Let’s get right to it, since I’m looking to get an early bedtime tonight for surgery tomorrow!

My second trip to New York City, for the Synergy Education Advanced workshop last week, was truly transformational.  I feel empowered and ready to make a difference, in my own life and on a much bigger level.  Again, as I said in my last post, I’m looking forward to having enough free time in the near future to really write about the gifts I’ve been given in these workshops!

So, now we’re in Houston, and getting into ‘kick-ass’ mode for tomorrow’s surgery.  Monday evening, all day Tuesday, and the first half of today were filled with preparatory tests, procedures and appointments.  Here’s the good great news: yesterday’s CT scan showed no new spots, and no growth in the right lung nodule they’re taking out tomorrow.  Hooray!!  I saw both Dr. Benjamin, my oncologist, and Dr. Swisher, my thoracic surgeon, and they’re both pleased with the scan results.  There is a large amount of inflammation in the upper lobe of my left lung on this new set of scans, but we were told that’s most definitely from the proton therapy I underwent two months ago.  That should improve over the next several months, though I’ll have some permanent scarring to that area.  In addition to the scans, bloodwork and doctor’s followups, I also saw anesthesia, had a pulmonary function test (Sammy calls it my ‘Darth Vader phone booth’ breathing test), and had a special procedure done this morning.  Because the lung nodule they’re removing tomorrow is so small, Dr. Swisher wanted to do a needle localization to make it easier to locate during surgery.  The procedure involves being partially sedated, then laying on a CT scan table (on my stomach in this case, since the easiest access to the tumor is through my back) while a doctor inserts dye and a small coil into my lung via a long needle to mark the exact location of the tumor.  All in all, it took around an hour, since I had to be scanned periodically during the process to ensure the needle was advancing to the correct location.  Afterward, I had to remain in the recovery area an additional three hours and have a series of x-rays done to make sure I didn’t suffer a collapsed lung during the procedure (which I didn’t).

After completing the needle localization procedure this afternoon, mom, Ang (who both flew in this morning), Sammy and I all came back to the apartment.  Yes, I’m thrilled to share that after putting our name on the waiting list a week and a half ago, we got a call Sunday saying that an apartment was available for us to move into as soon as we arrived (through the church ministry program we’ve used so many times in the past).  I’m beyond thrilled that I’ll have the opportunity to recover here, in a spacious, fully-furnished and comfortable space, after I discharge from the hospital, instead of having to be in a cramped hotel room!  That, and the apartment is half the cost per day of even the cheapest extended-stay hotel.  Truly a blessing.  If anyone would like the address (we’ll be here until around January 25th), just let Sammy (sammyminge@gmail.com) or me (stephanieminge@hotmail.com) know.

This evening’s festivities included our usual pre-surgery ritual: dinner at Buca di Beppo’s.  We’ve all stuffed ourselves silly (and enjoyed the company of our friends Bryan and Joanna) and are now in a food coma haze.  Add that to the dinner Sammy and I had last night with our pals Joe and Sarah at El Tiempo (Sammy’s favorite restaurant ever.  Really.), and we’ve certainly made food a central part of our first couple days in town.  Certainly a good thing in my case, since I’ll not be eating much for the next few days, and will have a decreased appetite for the next few weeks.

Tomorrow our report time to the hospital is 5:15am.  Ouch.  The surgery itself will probably start around 7am CST (that’s 8am for all you folk back home) and should only take a couple of hours.  Can’t say that I’m really nervous–this is very straight forward compared to my last surgery, where a positive outcome wasn’t guaranteed going in.  This will be easy!…..okay, not really, but you get what I mean.  Sammy will be posting on Facebook and giving an update here once everything is said and done.  Any and all prayers, happy thoughts and good vibes you’d like to send our way are much appreciated.  Goodnight!

-Steph

Posted by Stephanie  10:10pm  from the house

I HAVE RETURNED!!

I was beyond mortified to log on today and see the date of my last post.  October 19??!!  What on earth?!  My apologiesx100 for being gone so long—things have been B.U.S.Y ‘round here.  I know that none of you would ever fault me for being busy living life; after all, isn’t that what I’m always aiming for?  But, I’ve also been questioned a number of times on the lack of posts for the last two and a half months, so let’s remedy that.

Obviously you don’t want the play-by-play of every moment between mid-October and now…….unless you have nothing to do but sit at the computer and read this for the next three days straight.  Instead, I’ll just summarize and try not to leave any major events out.

1) Finishing Proton Therapy: Yippee!!  It’s over!  Technically, it’s been over since November 4^th, but I’m still celebrating it’s completion.  Overall, the six weeks of radiation treatment were enjoyable.  Wait, did I just say enjoyable?  Yes, actually, I did, because in comparison to chemo, proton therapy was a breeze for me.  I did experience some fatigue, and the very mildest of “sunburns” on my back in the two locations where the proton ray entered my body, but aside from that, there were no issues.  The staff was amazing, I got to listen to some great music during treatment, and the days flew by. 

2) Adios, Texas: Ang and I packed up the apartment (man, you can really accumulate a lot of crap in 10 months!), gave it a good cleaning, and said goodbye to Houston just a couple of days after I finished proton therapy.  I was thrilled to get back to the house (and stay there for longer than a week), but honestly, it was a little tough to make the adjustment back to living there.  I feel odd even saying that (because, hello, this is my house), but in the last six years, Texas and Ohio have often swapped places in the role of “home”.  I spent MUCH more of 2011 in Houston than I did in Springboro, and I got used to cooking, sleeping, just being there.  So much so that for the first few mornings I was back home in Ohio, I woke up confused as to where I was!!  Thankfully, having Sammy, the cat, and the familiar creaks and groans of the house to surround me helped speed up the re-acclimation process.

3) The Nanny-meister: Sadly, one of the recent events to report on was the passing of Sammy’s grandmother, Colleen (a.k.a., Nanny).  She passed away the week before Christmas, after a valiant fight with pancreatic cancer.  She was feisty and tough in life, and attacked her disease the same way.  I hope I can do the same in her honor.

4) Happy Holidays: Thanksgiving, Christmas and New Years have come and gone since my last post.  Sammy (who reverts to a wide-eyed 5-year-old during the Christmas season) and I were just discussing earlier tonight how quickly the holiday season seemed to fly this year—it felt like barely a week between turkey day and Christmas!  All the aforementioned celebrations were wonderful (though Nanny was truly missed on Christmas).  Each and every holiday since becoming sick years ago takes on new meaning, and I love having more memories to cherish. 

5) Synergy: The first time I ever heard of Synergy Education early last year, I couldn’t help but flash back to my childhood, where on every episode of the cartoon Jem and the Holograms, Jem would touch her sparkly star-shaped earring and whisper, “Showtime, Synergy!”, speaking to the holographic computer that would help her transform her appearance into the pink-haired rock star she was.  Really, it was quality cartoonage.  You’re missing out if you haven’t seen it.  Anyway, Synergy Education and the workshop of theirs that I attended in NYC in early December obviously has nothing to do with a cartoon from the 1980’s.  Instead, it focuses on who we (as individuals) are ‘being’ in our lives everyday, what’s working (or not working) for us, and gives us the tools to make improvements in every area of life.  TRULY UNBELIEVABLE.  There are really not enough pages or words that I could write to convey how transformational this workshop was for me, and could be for anyone.  When I’ve got more time, I want to talk some more about the things I learned about me (cause it relates bigtime to life and cancer treatment), but as I write this, I’m actually packing for a return trip to NYC for the next step in the workshop series.  So excited!  Well, except for the weather—it’s not supposed to get above freezing for the next several days.  Walking to and from the subway and around the city will be tons of fun in that!!

I hate when I’ve been away from posting so long—I’m forced to condense everything into paragraph snippets that barely convey all the information, let alone give me the chance to ramble and delve deep into any given subject (or how I feel about it).  Soon I’ll have the opportunity to get back to near daily posts, because after my six day trip to NYC, I’m flying straight to Houston.  Recovery time from proton therapy is over, and it’s finally time for that second surgery.

I’ll post more on details once I’m down in Houston on 1/9, but surgery is scheduled for Thursday, January 12^th.  They’ll be doing scans (which hopefully show no growth), and then removing the small nodule in my right lung that’s been there since January of last year.  As far as I know, that will be it for treatment—no additional chemo or radiation.  Dr. Benjamin wants to save those things in case they’re really necessary at a future date……which of course, they won’t be, because five bouts with cancer is enough, am I right?!

Hope everyone is having a truly blessed start to the new year.  I promise, promise, promise I’ll be back on next week in Houston once I have access to a computer again!

-Steph

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

More than halfway done.  Yippee.  Proton therapy has been quite the adventure, and so far, a very positive one.  I’d love to share my experience, especially since so few of you have any information about it.

I was nervous going in to my first proton therapy treatment.  Not because I was worried about feeling bad, or having any problems, but just because I really didn’t know what to expect.  I had done a good bit of research about it prior to that first session, but reading about it and actually being in the room to experience it are two very different things.

The teams (I’ve had two separate teams, depending on the time of day) of radiation therapists who work with me daily are amazing people.  The first night I was there, both of the therapists made me feel so comfortable and talked me through everything that was happening.  I was first taken to the changing room to disrobe from the waist up and don a gown (fashion statement of the century, right there), and then given a quick tour of the control room.  The therapists are with me in the treatment room almost all the time, but retreat to the control room while the actual radiation is taking place.  They have monitors there that allow them to see and hear me while keeping an eye on the computerized program that the machine cycles through (designed specifically for each patient). 

I was then taken next door to the treatment room.  Along one wall, there were metal shelves, one for every patient, that held the molds and machine blocks needed for treatment.  Computers lined a section of another wall, and then in the back of the room was the proton machine itself.  It’s hard to even describe.  There’s a metal table for me to lay on, a wide “belt” that wraps top to bottom around the treatment area, and the actual proton ray/machine, which rotates on that belt to be positioned in just the right spot.  Here’s a picture to help you better understand how it looks:

I lay down on the table and positioned my head and arms into the mold that was made for me after the simulation session.  Then one of the therapists spent another minute adjusting my hips and legs on the table so that I’d be in exactly the right spot.  The table was raised, and a moment later sections of the wall behind me pushed forward, coming to rest above me and on my left side.  I was told these were actually x-ray machines, and that I’d have x-rays taken every day to ensure that my placement on the table was correct.  Seeing a theme yet?  Placement is super important, since the proton ray is designed to target the affected area down to the millimeter.  Anyway, quick work was made of the x-rays, and those machines retracted back into the wall.  One of the therapists then started to load my “blocks” into the proton machine.  Anywhere from one to three thick gold plates (called apertures) with different shapes cut out in the center (to help shape the proton ray) were loaded in, then a thick, clear, acrylic block (reminds me of an icy igloo block) with a 3-D ‘honeycomb’ looking pattern in the middle of it (called a compensator) was placed in front.  Each patient has their own personalized set of blocks, since the shape and location of each person’s tumor/treatment area is so different.  I actually have two sets of apertures and compensators, because I receive two separate doses each treatment session.

Once the machine was loaded and the labels on the blocks scanned into the computer, the belt started to turn, taking the machine to the right and underneath the table.  Turns out the team of scientists designing my treatment felt like they could get to the targeted area best, and do the least damage to surrounding structures if the ray entered through my back.  One of the therapists warned that I might get disoriented as that belt turned, and that it would feel like the room (and me on the table) was moving, but not to worry, I was safely staying put.  Sure enough, it felt exactly like that.  Quite alarming the first time it happened (I could’ve shut my eyes, but where’s the fun in that?), but now I actually enjoy the craziness of that sensation.  As soon as the ray was in place, a chime starting sounding in the room, and I learned that was the therapists’ cue to exit to the control room.  I was told this first part of treatment would take only two minutes, and that I wouldn’t feel, see, or hear anything.  So, there I lay, alone in the room (with only some Michael Jackson playing to keep me company), trying to be as still as possible and breathe normally while awaiting this first session.  Aside from hearing a quiet hum from the machine when it started up, nothing else happened, and two minutes later the therapists were back in the room, typing on computers and rechecking my placement while the machine retracted and spun back around to it’s starting position.  They unloaded that set of blocks, replacing it with the next set (including a differently shaped ‘honeycomb’ dome block since it’s coming at a different angle), and the belt spun the machine overtop of me and around to the left side this time, stopping again underneath the table.  They left the room again, and after another short, two minute treatment, it was done.  The machine returned to it’s starting position, they lowered the table and helped me sit up, and then I headed back to the changing room before returning to the lobby to meet up with Ang. 

Because of the initial tour and extensive explanation from the therapists, that first session took just over a half hour.  The second day took almost as long as I got used to the routine, but since then, my treatment session average between 15-20 minutes start to finish.  So nice!   Most of my ‘zap sessions’, as I fondly call them, are scheduled early in the morning, so sometimes I’m barely awake when I get there, but between the upbeat music they blast in the room and the friendly chatting my therapists do, I’m wide awake by the time I leave.  During those few minutes I have on the table by myself, I’m either A) silently praying that the proton beam is going exactly where it needs to go to destroy any cancer that’s left in that spot, or B) I’m doing what Ang and I have dubbed the “Radiation Mental Chant”, or the RMC.  Those of you who have followed this blog for awhile know that back when I did all that high-dose inpatient chemo, we had a “Happy Chemo Dance”, which we did to encourage the chemo to work as it entered my body.  Since I obviously can’t dance while lying on the table, we’ve had to make adjustments and do our encouragement internally, hence the development of the RMC.  It’s a very simple mantra: “Go, protons, go!”  Over, and over, I’m willing it to work!!

So that’s a first-hand account of proton therapy.  Of course, people who are having other parts of their body treated (brain, spine, abdomen), have a completely different experience with it.  With all the insanely advanced technology, moving machinery and space-age room layout, I feel like I’m guest-starring on an episode of Star Trek.  It’s about as fun as cancer treatment can get, though I do have moments tinged with sadness when I see a child being wheeled around back near the three treatment rooms.  Proton therapy is extremely popular for a couple types of pediatric cancer, so seeing tiny little bald kids around there is a fairly common occurrence.  In the main hospital, they keep the children totally separate, but here, not so much.  It hurts my heart to see someone so young going through this, but they are always in great spirits.  Very brave.

Angela was with me for the first week and a half of proton therapy, then Sammy came down for a few days.  After he left, mom took his place, and she’ll be here until the middle of next week, when Ang will return from her duties as maid of honor in a friend’s wedding to finish out our time here.  Aside from my treatments every day, there’s not much going on.  I have a brief weekly appointment with my radiation oncologist, Dr. Chang, every Thursday so that he can monitor my progress.  That leaves a LOT of time on my hands (especially since the weekends are treatment free), and sometimes it’s tough to fill the hours.  We’re walking two miles a day (one in the morning, one in the evening), and making the occasional run to the grocery store, but I spend a lot of time reading and playing on the computer.  It’s probably a good thing, though, that I’m not insanely busy, since I’ve recently started to experience some of the expected side effects.  They showed up at the end of last week, exactly at the halfway point of my treatment.  Mild fatigue (hooray naps!), some discomfort when I swallow (about 30% of my esophagus is affected during the radiation), and the start of the ‘sunburn’ marks on my back where the proton ray enters my body.  So far, not bad at all.  I’m hoping they stay mild and I get through to the end of treatment feeling good.

Oh, one last exciting thing.  I was called a couple of weeks ago by the marketing director at the Proton Therapy Center, who often does stories on patients, which are then published to their newsletter and website.  She was contacted by Veronica, Dr. Chang’s PA, who thought my journey was worthy of such a story, so I have an interview tomorrow with the marketing team to share my six-year saga.  I’m gonna be famous!  Super cool.

I guess that’s about it for now.  I’ll try not to wait so long before posting again. 

-Steph

P.S.–If you’d like to learn more about proton therapy, check out MD Anderson’s page at http://www.mdanderson.org/patient-and-cancer-information/proton-therapy-center/index.html

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

Back again, just like I promised.    I left off in my last post with our travels home following surgery, so I’ll pick up right there!

My recovery time at home went well, for the most part.  Sammy set up my ‘command central’ downstairs in the family room using the couch, ottoman and a boatload of pillows.  Add a half dozen medication bottles, various crazy looking breathing apparatus (including a spirometer–used several times a day to strengthen my lungs), and a plethora of remote controls, and it was quite the setup!  For the first couple of weeks, I was still on heavy-duty pain meds around the clock and wasn’t capable of much more than laying on the couch.  I got up to forage for food, go to the bathroom or do my daily post-surgery arm exercises, but that was about it.  Around the start of week three at home, I was feeling well enough to lighten up on the pain meds and start to be more mobile.  I was able to go to church, have lunch with friends, help out with some low-key stuff around the house, etc.

It was right around that same time when I suddenly developed almost-daily bouts of horrid nausea and vomiting.  What on earth?  Random times during the day I would just feel awful.  Eventually I was even achy and rundown, like when I was on active treatment.  I wasn’t sick, I felt fine much of each day, but then out of nowhere I’d be bent over a pink square hospital tub heaving myself to no end.  At first I thought it had to be the pain meds—I had just refilled the prescription and was given a different generic of the same drug.  But, my symptoms didn’t always correlate with when I took those pain pills.  Then I thought maybe it was just due to my increased mobility and extra movement, but that didn’t really fit either.  It didn’t take Sammy long to come up with a different theory.  See, I usually lose a fairly significant amount of weight after surgery, due to not being able to eat much in the hospital and a decreased appetite for awhile after.  This surgery was no different—I’d lost between 10-15 lbs. according to my scale at home (although the scale at the hospital a few days ago showed less weight loss than that).  Sammy recalls previous surgeries where I’ve developed these same symptoms a few weeks after surgery, and he thinks it’s stored chemo and other medications being released into my system as I’ve shed those pounds.  As soon as we talked about that, I too remembered suspecting that with previous surgeries.  I mean, it makes sense to me, but then again, I’m not a doctor, so who knows.  Whether that’s the answer, or it’s medication related, or it’s just a natural progression of surgery recovery, I’m happy to say that after two weeks of that, I’m feeling much better.

So, I had a full four weeks at home, which is great.  Ang and I flew back down on Monday the 12^th in preparation for scans and appointments with both the surgeon and oncologist the next day.  We saw Dr. Swisher, my thoracic surgeon first, and I was anxious to have the pathology report explained.  I had access to it on my personal MD Anderson patient account about halfway through my time home, and though I thought it sounded pretty positive, with so much detailed medical jargon that’s only going to be super significant to my doctors, it was hard to really know all that it meant for my treatment.

Dr. Swisher examined my incision (which has healed nicely) and said that overall he was very pleased with the pathology report.  All the surrounding lymph nodes and samples taken came back negative, and of the 3cm hilar mass that we were initially dealing with, only 3mm of malignant material was removed during surgery (the rest was destroyed by chemo or was only fluid/blood).   However, that small amount of cancerous tissue was still largely viable when it was removed (suggesting that at least that section of it was resistant to chemotherapy), and there was still cellular activity at the edges of that area.  Because of the evidence that something was still happening around that area on a microscopic level, Dr. Swisher felt that radiation would be a necessary step to hopefully finish off anything hanging around nearby.  He didn’t have any details at that point about what specific type of radiation I would be undergoing—I would be meeting with Dr. Chang, one of the thoracic radiation oncologists a couple days later to find out more information.  Dr. Swisher mentioned that he and Dr. Chang have worked together on several sarcoma cases (soft tissue varieties most likely, since osteosarcomas aren’t typically treated with radiation) and that he’s the very best.

Right after finishing with Dr. Swisher, Ang and I headed around the corner on the same floor to the Sarcoma Center to see Dr. Benjamin.  He had spoken to Dr. Swisher and was on board with the radiation plan.  Dr. B let us know that the spot in my right lung remains the same size as it was on my last scan in July (which is good), and also said the scan showed thickening of some tissue around my lung.  He said it could’ve simply been post-surgical changes, but also might indicate cancerous activity in that area.  Because of that, he thought that Dr. Chang would probably opt for traditional 3-D radiation instead of more targeted Proton Therapy since it could ensure better coverage of those worrisome areas.

I left those appointments feeling okay about things.  I’m not super excited at the thought of undergoing radiation, especially since Dr. Swisher indicated that once you radiate an area, you can’t do anything further to that area (surgery or more radiation), since it pretty much transforms the area into a melded together mess of tissue/vessels/etc.  I had always considered myself lucky that for six years I hadn’t needed to go that route.  But, both Dr. Swisher and Dr. Benjamin thought this was the best option and said if we didn’t treat that area, something would most definitely grow back.  So, after calling Sammy, mom and dad and filling them in, Ang and I went home to start researching radiation in preparation for my appointment a couple days later with Dr. Chang.

Thursday morning Ang and I headed for the hospital.  Now, I thought I knew MD Anderson inside and out, with as much time as I’ve spent there, but we had to venture through hallways and areas I’d never been to make our way to the Radiation Center. I feel bad for the people working in that area, since most of it is on the basement level of the hospital, with no windows at all.  I’d go crazy!  I checked in and was quickly taken back to a room where I met Dr. Chang’s nurse Kathy and his physician’s assistant (PA) Veronica.  She started asking some routine questions and informed us that Dr. Chang was planning on Proton Therapy.  Really?!  I told her (and later him) about the ‘thickening’ that Dr. Benjamin had spoken about and thought needed to be included in the treatment area.  I had assumed when I heard Dr. B say that, that the area of thickening was right near the spot where the mass was removed, but Veronica pulled up the scans and showed me that instead, that thickening was on the back side—clear across my lung from the hilar mass.  To Dr. Chang, it wouldn’t make sense with the way my cancer works to have jumped to that spot, and since this had shown up on the first scan after surgery, it made total sense to him that the area of thickening was due to post-surgical changes.  After all, Dr. Swisher did take a small wedge of lung with a tiny nodule in it from somewhere in that left lung (didn’t know that until reading the path report—it was too small to show up on a scan, but he could feel in when he was in there doing surgery), and had also repaired a small gap on the backside of one of my ribs where a chunk had been removed during a previous surgery.  After looking at the scans, I agree that one of those other things could’ve certainly explained why that thickening was there.  Plus, including that thickened area would’ve meant radiating more than half my left lung, and that would not be a good idea!

So, Dr. Chang opted for Proton Therapy for several reasons.  First, we are dealing with a small area in a very tricky location—it’s right above my heart, close to my lungs, esophagus and spinal cord.  Traditional radiation does damage to the tissue as it moves through the body to the targeted area, but then also has fallout to the areas behind, around, above and below.  That means it would do damage to all those surrounding structures that I listed, resulting in possible heart issues, lung scarring, irritation or damage to the esophagus, etc.  Proton Therapy, on the other hand, stops its charged particles at the targeted spot and does not have any additional radiation fallout to the surrounding areas.  Yes, it does affect the tissue it moves through (aka, the front of my chest) on it’s way to it’s target, but it will spare my heart, lungs, spinal cord and most of my esophagus from damage. Because of my age, Dr. Chang wanted to preserve as much of that area as possible for quality of life, to prevent further issues from damage to those areas, and, believe it or not, to allow for future treatment.  Yes, the second big reason for Proton Therapy is that because so little healthy tissue is destroyed, it allows for additional surgery or radiation again to the same area at a later date.  Boy, was that a relief to hear.  I was terrified thinking about only having one shot at things.  What if something had come back and I was just out of luck?  I shudder at that thought, but now we have more options in the future (which hopefully we won’t need!!).  Lastly, Proton Therapy delivers a more concentrated dose of radiation, which sometimes can mean better success with fewer treatments.

Dr. Chang was great about taking time to explain things and answer all our questions.  While I’m not thrilled at the prospect of being irradiated, this definitely sounds like the absolute best option with the greatest chance for success and the fewest side effects.  Dr. Benjamin had indicated regular radiation would lead to severe swallowing/eating issues (possibly resulting in hospitalization or at the least, the need for periodic I.V. fluids to stay hydrated), so I was thrilled to learn Proton Therapy wouldn’t cause that (maybe a mild sore throat, but probably nothing too painful).  I won’t lose my hair, and aside from some fatigue, a sore throat and a sunburn-like effect on my chest, I should feel okay most of the time.  Sammy jokingly wondered if I would glow in the dark afterwards.  Sorry honey, but I think you’re out of luck there!

Right before finishing up with Dr. Chang, he informed us that I would need to undergo something they call ‘simulation’, where they do scans, placement and markings on me in preparation for beginning treatment.  The information from the simulation will help them map out all the specifics for my radiation treatments and ensure that things are done exactly the same way for every one of them.  Luckily, they had a simulation appointment available that same afternoon, so Ang and I grabbed a snack in the cafeteria, then headed back to the same place.

I was taken back to a CT scanning room, where I had to disrobe from the waist up (I had a towel to cover up, thankfully), and then lay down on the CT table, which had some crazy bean bag thing surrounding my head and shoulders.  They used these green guide lights coming from the ceiling and walls to position me exactly in the center, then placed my arms over my head and suctioned in the ‘bean bag’ so that I couldn’t move around.  After a couple of runs through the scan machine, I was marked with three big crosses in purple marker—one in the middle of my sternum and one on each side, right under my armpits.  Then, they did something I never ever thought would happen—they tattoed me.  Yes, I’m serious.  Tattoos.  I swore I’d never get one, and I guess this doesn’t really count, since they’re only three tiny, freckle-sized dots; one in the center of each of these markered crosses.  The radiology tech took a skinny tube with a needle on the end, filled it with ink, and poked me (pretty darn deep, so that it’d be permanent) to make these spots.  Even now, four days later, those spots are bruised and extremely tender.  I hate to think what it’d feel like had I gotten an actual tattoo!

The whole process took about an hour, and then I was free to go.  They said it would take a week to design my treatments using all this information, which would put me starting at the end of this week.  But, since I need 30 treatments (M-F for six weeks), it didn’t make sense to start late in the week, have one or two treatments, and then be off for the weekend; therefore I’ll be waiting to start until Monday, September 26^th.  Six weeks of treatment plus this week of waiting before I start means I’m stuck down here another seven long weeks before I can go home again.  Blargh.  I’m hoping it goes quickly.

Okay, so I think that’s everything….well, maybe not everything, but close to it.  Ang and I have a whole week with nothing to do.  We’re contemplating a couple of day trips, maybe to San Antonio or other surrounding areas that we’ve never seen.  I’m sure we’ll watch some movies, get some exercise and maybe even do some productive things too.    Wow, this post has gotten long.  I’ll stop babbling.  Adios for now.

-Steph

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

Okay.  I’ve had quite the hiatus from posting (six weeks!), and at a time when I’m sure everyone wants to know what’s going on.  Sorry for that, it’s just been really important for me to focus on healing and not worry about anything else.

So, by now you’ve probably all had a chance to read Sammy’s post about the outcome of surgery.  I’m sure you can figure out from that post that the results were much, MUCH better than we could have imagined, but I’d like to retell the events of that day from my perspective, and maybe get more into medical detail than he did.

We arrived at the hospital bright and early (5:15am-ouch!) and Sammy accompanied me back to the pre-surgery holding pen, where I got to don my awesome hospital gown, anti-embolism stockings and paper shower cap thingy.  At least a half a dozen people stopped in to ask the same questions—nurses, anesthesiologists, even a hospital chaplain.  Then it was time to have an extra I.V. line started, get marked on (cutting into the correct side would be important), be given a shot of Ativan to stay relaxed, etc. 

Eventually I had to bid Sammy farewell so I could get wheeled back to the operating room.  Back there it seems chaotic, though I’m sure it’s a controlled chaos—people scurrying about, calling out instructions and setting up equipment.  I scooted myself onto the surgical table and had to sit up while they put in the epidural.  By that point, the Ativan had kicked in, so it’s all a little fuzzy, but I do barely remember laying back and having an oxygen mask put over my face before I drifted off.

The next thing I know, someone’s pulling out the tube from my throat (very unpleasant, by the way—I haven’t been conscious enough in the past to remember that part), and immediately I realize I’m in horrible pain.  My shoulder.  That pesky left shoulder has caused problems after every chest surgery (thanks to the way it’s positioned for several hours during surgery), and this time was no different.  I was vaguely aware of machines beeping and things being shouted, but I could only concentrate on my own labored breathing and painful groans.  My body’s reaction to pain is hard chills—my teeth start chattering and I visibly shake and shiver.  The nurses, of course, took that to mean I was cold, and started piling on blankets, but I was finally able to get out a few words to let them know what was really going on.

It felt like forever before they were able to get the pain under control.  In reality, it was two shots of morphine and probably a half hour.  Once things had calmed down, I was able to better assess how I felt.  Dry mouth (hooray for ice chips), fuzzy feeling brain, super sore, but I noticed I could breathe fairly easily.  That was when I started to freak out.  See, usually the surgeon is right there (literally, right in my face) when I wake up after surgery to give me the lowdown, but this time, Dr. Swisher was nowhere to be found.  Maybe that was because of the pain episode that erupted right when I woke up, or maybe he had somewhere else to be at that time, but there I was, lying in a hospital bed with absolutely no idea how surgery went.  We were told before surgery that if the hilar mass was removable, they would most likely have to take a lobe of lung with it.  Did the fact that I could breathe fairly well mean that they opened me up, realized they couldn’t get it, and closed me right back up?  My brain started trying to figure things out, but I couldn’t even see a clock to know how long I had been under, and the nurse in the recovery unit couldn’t answer any of my questions about the outcome of surgery.

Finally, Dr. Swisher and his team made an appearance (I later learned that was about two hours after waking up in the recovery unit).  By the time he showed up, I was having a full-blown internal meltdown, having imagined the worst-case scenario, so when he spoke the words, “I think I have pretty good news”, I nearly passed out in relief.   He went on to explain that when he got in there, instead of finding a mass (which looked part fluid-filled and part solid on the scans), it looked as though the suspected lymph node was almost non-existent (destroyed by chemo).  In it’s place was what he called a pseudo-aneurysm—a bulging blood vessel in the location of the previous mass that had grown and looked on the scans like our cancer bad guy.  He said he fixed that (along with repairing a gap in one of my ribs from a previous surgery with a small prosthetic piece), but didn’t see much that looked like tumor.  He did take some of the surrounding tissue to be checked.  He also mentioned that he wasn’t sure I would need radiation after all, but that we’d have to wait for the pathology report to be sure.

If I could’ve jumped for joy, I would have.  Just a few minutes after Dr. Swisher came by, Sammy showed up, and the smile on his face matched my feeling of overwhelming relief.  He, mom, and Ang (who visited after he left), had an equally rough day sitting in the waiting room on edge, unsure of what they were going to hear.  Lucky for them, they found out the good news quite awhile before I did! 

The next couple of hours in the PACU (post-anesthesia care unit) were a blur.  I slept, had another pain episode, ate a LOT of ice chips, and eventually got wheeled up to my room.  I slept most of the rest of that day away, but did have to do some breathing treatments during the night, and they had me sitting up and walking around the floor fairly soon.

The rest of my hospital stay was pretty uneventful.  Another couple of teeth-chattering, shaking pain episodes—the epidural, though it controlled the pain of my incision area quite well, didn’t do anything for my shoulder.  I spent a day only on ice chips, another with just clear liquids, and then I was finally able to eat solid food.  Just a couple of days after surgery I was already doing several laps around the nurses station, and about day four, the fluid output from my chest tube was low enough for it to be pulled (along with that miserable catheter—I hate that thing more than any other part of surgery!!).  On day five, I was released from the hospital, and mom, Ang and I (Sammy left a couple days after surgery to be back at school) came back to the apartment, where we built a pillow fortress for me to be propped up on the next few days.

After just a few short days at the apartment (and ten days after surgery), we flew home to continue my recovery.  That’s sooner that I’ve usually tried to travel after surgery, but 1) I wanted to be home ASAP to recuperate there, and 2) it was coming up on my birthday!  They were a rough couple of flights to get home, but boy was I glad when I got there!

Alright, I’m stopping this post here—it’s rather lengthy already, and there’s still so much to share.  I’ll get started on the next post, which will cover the rest of my recovery at home, plus my recent return to Houston and the next step in my treatment process.  Stay tuned!!

-Steph

Posted by Stephanie  10:00pm CST  from the apartment  Houston, TX

Yes, I’m alive.  Yes, I’m thrilled that surgery went way better than expected.  Yes, I’d really like to tell you all about it.  But, no, I don’t really feel up to posting yet, and so I haven’t.  Honestly, I’ve either been sleeping or dealing with pain, neither of which leave a lot of time for catching everyone up.  But, I will soon, have no fear.  Night night.

-Steph

Posted by Sammy

1230 pm from MD Anderson

Well that was unexpected….ly AWESOME!!! Follow me if you will. So there was a sarcoma filled lymph node. Kind of like a jelly donut from hell. Not especially fond of this situation we blasted it with a few dozen gallons of chemo. And it shrunk. A lot. Like the dudes head in Beetlejuice.

Moving on. Suddenly it started to grow. Kind of quick. Ruh-roh. That’s no good. So the plan became “lets cut it out.” We were worried, assuming that we had a growing, chemo resistant super cancer on our hands.

Funny thing those CT scans. They show you a picture but don’t tell you exactly what it is. Turns out that it might look like a tumor, grow like a tumor and look like one on a scan but what we actually were looking at was something called a pseudoaneurysm. Basically the chemo did so much damage to the tumor and, thus the lymph node that not only did it shrink but it went all Wicked Witch of the West on us.

So….what happens now? Well we wait for Steph to recover, do some pathology on the tissue and eventually take out the lung nodule which for a guy like Dr. Swisher rates about like the kid who got picked last for kick ball. We’ll deal with him soon enough. So today was about as good as it could have gone. We may not even have to do radiation! We’ll see what the path report says but all is well for now. Thank you so much for all the prayers and positive thoughts! I know it means a lot to me and really helps Steph through all of this!

More soon.

Sammy

Posted by Stephanie  8:30pm CST  from the apartment  Houston, TX

The date has come.  The time is set.  Tomorrow is surgery, and that lymph node has no idea that I (and Dr. Swisher) are about to end it’s happy existence. *cracks knuckles and stares menacingly*

Today was full of pre-surgery appointment fun.  Anesthesthia was fine–Sammy and I had to rattle off all my past post-surgical cardiac and pain management issues and make sure they’re aware which pain meds work best, etc.  I know they have all that information documented, but five and a half years of info is a lot to dig through, so it’s easier just to bring them up to speed….and I feel better spelling it all out so nothing gets missed.  We then headed to my pulmonary assessment, where I got to sit in a phone booth (well, it looks like a little phone booth, anyway) and breathe into this giant tube that measures lung function.  I always feel totally idiotic in there, with a neon nose clip on, holding my hands against my cheeks and panting like a dog.  I don’t know how the technicians giving those tests keep a straight face.

Mom flew in this afternoon (we’re packing this apartment like a can of sardines!), and this evening she, Ang, Sammy and I went to the traditional pre-surgery dinner at Buca di Beppo’s.  So. Much. Food.  Even hours later I am still beyond stuffed, which is probably good, since I won’t be eating anything for at least a couple of days.

So, now to the important info–surgery time!!  I’m first on the docket for Dr. Swisher tomorrow, which means we get to report to the hospital at 5:15am (ouch!).  After going through all the pre-surgery procedures and placing the epidural for pain control, they’re looking at getting the surgery started around 7am central time (that’s 8am for all you Ohio people!).  That early in the morning, I’m hoping Dr. Swisher has gotten a good night’s sleep, and had a hearty breakfast and a good cup of coffee.  I want him bright-eyed and bushy-tailed for this!    It’s probably good that I’m going that early in the morning (despite the wake up call at the sphincter of dawn), because that’s less time I have to go without anything to eat or drink (I can’t have either after midnight).  That also means less time to get nervous, although there’s certainly no way to avoid that all together. 

There’s a four hour block of time allotted for my surgery–it may take more time, it may take less.  I’ll obviously be out for all of it (thankfully), but mom, Sammy and Ang will be sitting in the waiting room attempting to pass the time and not focus on what’s going on in the O.R.  I certainly don’t envy them having to wait; I know it’s going to be more torturous this time than usual.  Anyone who’s praying for me, throw in an extra one for them, that they might have peace.

Okay, I need to take a shower and lather up with the special soap they gave me, then I have to pack my duffel bag for the hospital stay.  Oh, but first, let me share some interesting info Sammy discovered this evening.  U.S. News and World Report has recently published their list of the top doctors in the nation.  Dr. Benjamin (my oncologist), Dr. Swisher (my thoracic surgeon) and Dr. Curley (my liver surgeon) are ALL on that list, and all three of their names are marked with a symbol designating them in the top 1% of their field.  How’s that for awesome?!  I’m in the very best hands tomorrow, for sure.

Thank you in advance for all the prayers, good thoughts and positive vibes headed our way (keep ‘em coming!).  Sammy will be posting updates periodically on here and on Facebook, so keep checking in for information on how things are shaping up.  I’m sure it will be a few days before I’m up for posting again, but when I can, I will.  Night all!

-Steph

Posted by Stephanie  10:00pm CST  from the apartment  Houston, TX

Ang, Sammy and I have just returned from having tex-mex with Joe and Sarah.  Guacamole and queso, enchiladas and margaritas.  We’re stuffed.  Disgustingly stuffed, but oh, was it good.  Little things like dinners out with friends have been a lifesaver this last week.  It really helps my mental state to stay busy.  We’ve seen a couple of movies, gone to IKEA, gotten pedicures, etc.  The less time I have to sit around and think about things, the better!

I’ve had a lot of people ask this last week how I’m holding up.  I can’t lie–I have moments where I’m an absolute mess.  Sometimes it’s really tough to not get bogged down in all the ‘what-if’ situations.  Any of you who have found yourself aboard the ‘worst case scenario’ train know how easy it is to let your thoughts spiral out of control.  BUT, as soon as I realize that’s what I’m doing, I make a conscious effort to stop.  It doesn’t do me (or anyone else) any good to completely freak out over things that may not even happen.  Don’t get me wrong, I’m all for being realistic about situations, but I refuse to let those kinds of thoughts take hold before we know what will happen.  It’s going to be much more beneficial to focus on positive scenarios and the outcome we want.  Mindset is a powerful thing, my friends.  It may sound cheesy, but it is oh-so-true.  Plus, telling myself those good things (and hearing them) over and over certainly doesn’t hurt in my effort to believe them. 

Tomorrow I see anesthesiology for my pre-surgery work-up, and I have a pulmonary function assessment.  Between those two appointments, we’ll be spending a good chunk of the day at the hospital.  I’ll be given a phone number to call tomorrow evening to get the specific report time for Thursday.  Of course, as soon as I have that info, I’ll post it on here so that everyone can be sending prayers, good thoughts and positive vibes toward Houston.  We appreciate the support so much!

Alright, just a quick update.  I’m off to bed.  Nighty night all!

-Steph

Posted by Stephanie  10:00pm CST  from the apartment  Houston, TX

One of the greatest fears I’ve carried with me during my 5 1/2 year journey with cancer is hearing the words, “There’s nothing else we can do.”  While I didn’t hear those exact words today, I did hear a variation on them, and what I thought was going to be a routine (for me, anyway) surgical consult quickly turned into a nightmare. 

Ang and I waited for quite awhile this morning in the thoracic center.  Once we were finally called back, we saw a nurse, a nutritionist, and two different physician’s assistants, then waited some more before finally seeing Dr. Swisher.  Seeing as how he’s done all my previous chest surgeries, I was totally at ease when he walked in, but that comfort rapidly dissipated when he began to explain how truly tricky the location of that hilar lymph node mass is.  Turns out it’s not only sitting right between my heart and left lung, but it appears on the scan to be nestled in amongst several very important arteries and veins.  It’s size doesn’t help matters, but Dr. Swisher said he wasn’t even sure that reduced size would’ve made much of a difference because of it’s placement.  He went on to say that the only way that he could guarantee total removal of the lymph node with clean margins is to remove my entire left lung, and he’s not willing to do that A) because it’s a drastic move and B) because I have disease in my right lung also.  It doesn’t make sense to remove a whole lung when we can’t be sure the other lung will stay clear. 

Dr. Swisher said there was a chance he might be able to remove some or most of the mass without needing to take a whole lung, but that it was very risky and would probably not be totally successful.  He asked if Dr. Benjamin sent me to him now for surgery because we were out of chemo and other treatment options.  “No,” I said, “I’m here now because chemo stopped being totally effective, and Dr. Benjamin thought we should go ahead and take these spots out, then reassess followup chemo options after surgery.”  Dr. Swisher said that if there were any other chemo options, that we should try those first, and he decided to step out and call Dr. Benjamin for his opinion on the matter.

We’ve been at this long enough that not much phases me anymore, not even getting bad news about scan results or learning treatment will take longer than expected, but as soon as Swisher left the room, I burst into tears.  My brain went into overdrive.  Surely once Dr. Benjamin found out that the lymph node wouldn’t be as easily removed as first thought, he would have other ideas we could try.  I know I’ve been on a lot of chemos, and not many of them have worked, but there’s still ones to check out, and clinical trials, etc.  I truly believed he would have another option, but when Dr. Swisher came back in the room, he said just the opposite.  Dr. Benjamin didn’t feel there was a chemo option that could guarantee positive results, and my immune system isn’t up to the task of experimenting with different chemo drugs until we find something that works.  Therefore, he feels surgery is the best option.

Swisher wasted no time in outlining the plan he has in mind, and it involves both surgery and radiation.  Huh.  Wasn’t expecting radiation to be involved, seeing as how it’s never even been considered in the past.  Anyway, he’s going to start with an exploratory surgical procedure on the lymph node only, since it’s the more immediate concern between my two spots.  He’ll go in through the back, opening up the same incision he’s used for both my left lung surgeries.  From there, he’ll isolate the area of the lymph node, check it out, and decide if he thinks it can safely be removed.  He was upfront in saying there’s only a 50% chance he’ll be able to take it out. (Wow was that hard to hear–I think that was the point at which I started uncontrollably shaking)  If he can take some/most of it, there’s a good chance he may also need to take the upper lobe of my left lung along with it, and if there’s massive bleeding, he might even be forced to take the whole thing (though the chances of that are slim, thankfully).  However, if he gets a look in there and decides he can’t safely attempt to take any of it out, he’ll simply close me back up, and there the mass will stay.  He paused briefly in his explanation, long enough for Ang to ask what that would mean.  That’s when he said it…..”That means you’ll have something in there that’s essentially untreatable.” 

Inside, I was screaming, and my inner dialogue was going a million miles a minute.  ‘No.  No, no, NO.  My ears must be deceiving me, I know I did not just hear those words.  I’m not ready to hear that, I just can’t handle it.  I feel fine, things were going fine, this was just a roadblock.  This CANNOT be it.’  On and on that inner voice went, but on the outside I just sat numb and continued listening while Ang mechanically rubbed her hand in circles on my back.

No matter what happens during the procedure, after I’ve recovered from surgery, step two is to undergo radiation.  If the lymph node has to stay in, the success rate for the radiation is a dismal 30%.  If the mass can be removed, the chance for success with radiation goes up to 50-60%.  Still not great, but certainly better.  After completing radiation, I’ll undergo a second surgery to remove the tiny nodule in my right lung.  From there we wait until my body can handle more chemo or another treatment is discovered and becomes available.

That’s the gist of it.  In five minutes time, we went from thinking, “Eh, it’s tricky, but no problem” to finding out the situation was FAR more severe than I (or Dr. Benjamin) knew, and that not only was surgery going to be extremely complicated, but that I was facing a situation where remission might never be possible. 

I wish I could put into words how it felt, learning news like that.  It’s always been important to me to be transparently honest on here about the cancer experience, and I know that’s got to be a question on everyone’s mind.  Maybe once I can stop sobbing uncontrollably for more than a few minutes, I’ll be able to organize my jumbled thoughts and get them out on here.  Until then, I’m just existing in a state of numbness and trying to wrap my brain around it all.  I’m determined to find my way back to positivity.  I know I will, and it won’t take long, but it isn’t going to happen tonight.

If, if, if…..lots of “if’s”.  I feel like I need a flow chart to outline all the possible scenarios, percentages and outcomes.  None of them look great, if I’m being brutally honest.  I can only hope the anatomy right around that lymph node is more favorable in person than on the scan.  Oof.

So, Ang and I are here with not much to do for the next few days.  I’ll have an anesthesia consult and a pulmonary assessment sometime early next week, then surgery is scheduled for Thursday, August 4th.  We won’t know exact time until the day before.  Sammy is drastically altering the band rehearsal schedule at school for next week and planning to head down here this weekend.  Mom will fly in next Wednesday.  So many details to get worked out, but it’s okay, because things like that help distract me, and right now, distractions are good.

Time for bed.  I just want today to be over.  I’ll be back when my brain decides to start processing things again.  Night all.

-Steph