One very long week.

Sunday (last Sunday, not yesterday):  I woke up after a great evening of dinner and drinks with friends in State College to find that the sore throat I had felt coming on had turned into a full blown case of feeling like I was swallowing glass shards.  Knowing I had a busy week coming up, I tried to head things off at the pass by going to urgent care.  I was in and out in 15 minutes with a diagnosis of a possible sinus infection, and prescriptions for antibiotics and some nasal spray.  I was taking both by the end of the day.

Monday (last Monday, not today):  My throat was not feeling any better, but it wasn't feeling worse either, so I decided to go to my Mediport placement as planned.  After telling them my sob story from the day before, they decided that the oral antibiotics plus the IV ones that had been ordered would be enough to keep whatever crud was invading at bay during and after the procedure.  About that.  I was told the placement would be done under conscious sedation, meaning you're technically awake, but don't feel anything and sometimes don't even remember having it done.  I've had it before for a central line placement, and trust me, it made me loopy enough to have a very in depth discussion about Smurfs with the radiologist.  This time?  Not so much.  I was very much awake, and decidedly not comfortable throughout the entire procedure.  I felt everything.  It's really something to actually hear someone ask for a scalpel and seconds later feeling said scalpel rip through your chest flesh.  On the plus side, because the meds didn't work (at all), I had very little to recover from.  So, I was discharged and back home and resting within an hour after.  And the placement was a success...so there's that.  Jerks.

Tuesday:  I woke up feeling worse than I can remember feeling in a very long time...and that's saying something.  The pain in my throat was excruciating.  Swallowing, talking and even breathing created a pain I wasn't aware existed in throat form.  My entire mouth and throat were swollen, and I had a giant swollen ball of something under my tongue.  I also could not keep my eyes open.  I was falling asleep sitting up with the lights on, and for those that know me well, that never happens.  Somehow, I managed to get myself showered, and out the door to the ER (I realized about halfway there that I probably shouldn't have driven myself...too late.).  I was seen relatively quickly, and the doctor took one look in my mouth and declared it was the most severe mouth/throat infection he had seen in awhile.  Awesome.  They took some blood (all was normal, well, normal for me), gave me IV fluids and antibiotics, and sent me home with a pretty hefty oral antibiotic.  Turns out I was there for a fairly long time, but I slept through most of it which passed the time well!

Wednesday:  Wednesday was to be the day of firsts, and ended up being the day of jack squat.  Radiation was my first stop, and the first thing they tell me is that I wouldn't be having treatment that day because my "treatment plan wasn't complete/signed off on"...whatever that meant.  What I did get to do was lay on the treatment table for an hour (my appointment was scheduled for 1/2 hour, mind you), while they adjusted and drew more lines and pictures on me.  When all was said and done, though, they said I was good to start Thursday, and I was now over an hour late for my appointment with Dr. B upstairs.  My tardiness didn't seem to matter much, however, because it didn't take Dr. B long to decided that I was too sick to start chemo.  I was pretty bummed, but expected as much.  I was mostly frustrated because Jen had switched her schedule around to spend the day with me, and it was turning out to be a complete bust.  All was not lost, though, Jen raided a local farmer's market, finally unpacked my juicer that had been sitting in its' box for months, and got me juicing!  Lesson learned:  bok choy is not good...ever.

Thursday:  My throat was starting to feel a bit better, but I still wasn't able to get down any solid food.  Radiation was definitely a go, though, so I headed into my first treatment.  I wasn't really sure what to expect.  Basically, the two things they tell you are:  it's painless and it doesn't take very long.  Both of those things are true.  What they don't tell you?  You can actually feel the heat as the machine makes it's way around you, and the room has a faint smell of burnt flesh when they're done.  Fun times! 

Friday-Saturday:  With the exception of radiation on Friday, I didn't leave my apartment at all these two days.  Saturday, in particular, I was feeling exceptionally craptastic.  In addition to still not being able to swallow solids, I was running fevers with sweats/chills, nonstop nausea, vomiting, the whole nine yards. 

Sunday:  Jen and family to the rescue...again!  The nausea and vomiting had stopped, and finally my appetite returned.  Sadly, I still couldn't swallow anything more than applesauce.  But Jen's grandma sent over some yummy mushroom soup, yogurt, and jello that hit the spot.  Then, Jen slaved over a hot stove to make me some veggie broth that was surprisingly amazing!  By the end of the day, I was rehydrated, finally had some nutrients in my belly, and feeling much better in comparison to the rest of the week.

Monday (today):  I had a follow-up with Dr. B this morning, and again, I had the feeling chemo was going to be nixed...and I was right.  His biggest concern was the fever with chills, and that I hadn't eaten solids in over a week.  He put me on another antibiotic, and started me back on the thrush medication I had been on in case the antibiotics had caused that to resurface.  I've only had one pill so far, but I think it may be working...I only kind of choked on the antibiotic tonight...progress!  They were able to access my port for blood, though, and it seems to be in good working condition for whenever we do get this party started.  Radiation today was uneventful other than the fact that the techs are obsessed with my hot pink flippy floppies.  Old Navy, ladies, I don't know how many times I have to tell you!! 

Here's the plan, Stan...

Even though last week's violation of my body in various ways was pretty awful, it was well worth it to get the news I've received in the past two days ---> a clear, detailed treatment plan.  As originally suspected, treatment will be heavier on the radiation than on the chemo, so the first step was to "simulate" the radiation experience.  At this appointment, the goal is to find the best position to have you in on the table in order to both effectively treat the cancer, and protect my precious kidney cargo.  I have to say, I thought having digital photos taken of my butt bits was humiliating, but that was nothing compared to this appointment.  I was basically laying on a hard as a rock table with all my good parts hanging out for the world to see at which point wires were place, drawings were made, and tattoos given.  Luckily, though, the first position they put me in ended up being the big winner, and it is NOT ass up!!  Dr. Sood thought that lying on my back would give him a better chance of being able to both visualize, and not treat my kidney.  Bonus for me:  Dr. Sood showed me, in great detail, my CT scans!  It was both very cool (not only could I see the tumor and the insanely large lymph nodes, but he showed me Mini Mo', as well...and she's HUGE!!!), but also a bit scary as it gave me visual of just how close the kidney is to the left lymph node he is treating.  Like, just a few centimeters close!  But I left his office feeling confident that he is confident...or, at the very least, confident in his abilities to do the very best he can.  I'm pretty ok with that.  My first treatment is next Wednesday morning, and I will go every day Monday-Friday until October-ish.

This morning, Jen and I went to see Dr. B to discuss the chemo side of treatment.  I will be getting two cycles of chemo on days 1-4 and 29-32 of radiation.  For those in the know or the nerds in the group, I will be getting 5FU (I know, right?!?!  FU!!!  Love it.) continuous for the 4 days, with a bolus dose of Mitomycin on the first day of each cycle.  The side effects for each medication are similar and include the usual hair loss, mouth sores, GI distress, and bone marrow issues (drops in blood counts).  I'm hopeful that because of the reduced amount of chemo, the side effects will be manageable, at best, but I'm also realistic and prepared for whatever I get.  Dr. B also confirmed that I will have a Mediport placed to facilitate treatment.  Long story, short, with the port in, I'll be able to get the chemo infusion started on the first day, and then go home with a pump that will infuse the rest of the meds over the four day cycle.  I'm sure it will be super stylish!  I may need a fanny pack.

So.  For those who want to play along at home, here is what's on the agenda next week:

Monday:       Mediport placement
Tuesday:       Recovery from said Mediport placement
Wednesday:  First radiation treatment/meeting with Dr. Sood
                     Meet with Dr. B for chatting and bloodwork
                     Chemo:  cycle one, day one
Thursday:     Radiation
Friday:         Radiation

Add to this craziness one of my best friends having a baby girl on Monday, and we have a recipe for an action-packed week.  I guess I will just have to break out the extra large sassy pants!

Poked, prodded, and pooped...literally.

This week was chock full of appointments, most of which were tests and scans.  I had seven total, and it all started with an MRI of my abdomen and pelvis.  Despite previous bouts of claustrophobia-induced panic, and that fact that it took over an hour (both my butt and left hand were completely numb after), it was relatively uneventful.  Next came the PET scan and chest CT on Thursday morning. 

***PSA:  If you have the choice, never - I repeat, NEVER - schedule a PET scan and colonoscopy on back to back days.  For the PET, you may only have water after dinner the day before, and for the colonoscopy, it's a clear liquid diet the day before.  So, you're looking at, at least 36 hours of not eating.  You're welcome.***

The PET was new to me, but pretty painless.  I had to drink a not awful Tang-flavored beverage beforehand.  Then I was taken to the "quiet room", which, not going to lie, terrified me at first.  There, an IV was started, and the radioactive glucose was injected.  I had to lay in the dark in the quiet room for awhile, but the scan itself only took about 20 minutes.  Hands down, the best part of that scan was getting the chance to mess with the tech.  When going over my history, our conversation went something like this:
                    Tech:  You've had two kidney transplants? You're so small, how did they fit them in there?
                    Me:    Well, that's why I had the hysterectomy...to make room.
                    Tech:  *mouth open look of horror*
                    Me:    I'm kidding.

Thursday was also my date with the radiation oncologist, Dr. Sood (his actual name...too hilarious to change!), and may I just say...I LOVE him.  I have dubbed him the Indian Dr. Bates.  Like Dr. B, he is very old school (paper charting, lots of drawings, technologically challenged), extremely thorough, and inadvertently freaking hilarious.  Don't get me wrong, his jokes were also funny, but his deadpan delivery of, well, any kind of information really, his tendency to close his eyes and say nothing mid-thought, and his cutting me off mid-sentence to call my rheumatologist kept Jen and I on the verge of inappropriate giggles the whole appointment.  (Seriously. At one point, Jen had to turn completely around in her chair to keep from looking at me or him!)  That being said, I feel 100% confident in his ability to treat me.  He is taking all my issues very seriously...lupus, having a compromised immune system, and most importantly, my kidney, Mini Mo'.  He brought up Mini Mo' as a potential complication that I had not even thought of.  Most of the cancer is on my left side, the same side as the kidney, and both it, and the cancer in the lymph nodes in that area are dangerously close to the kidney.  Therefore, radiation will be a tricky business trying to zap the cancer without damaging Mini Mo' in any way.  But again, I feel confident that Dr. Sood will make it happen.  Here's a very brief breakdown of that visit:

• PET scan:  After a brief look at it, Sood thought the cancer was limited to the butt, and possibly 4 lymph nodes (although he did mention he has been wrong before, ha!).  Good news.
• His concerns:  lupus, compromised immunity, kidney, my ability to tolerate treatment
• General plan:  At least 5 weeks of Monday-Friday treatments.  Will reevaluate then, and more than likely, have another week or 2 of treatment.  This would be in addition to any chemo I may need/am able to tolerate.
• Next appointment:  Simulation next week.  I will go in and they will find the best positioning (my luck?  ass up) for treatment.  First treatment would then be the following week.

Sood's handiwork:

Finally, the last test of the week was this morning:  the dreaded colonoscopy.  Don't let anyone lie to you ever.  The prep for this test is really as bad as everyone says it is.  For me, getting the drink in was much, much worse than getting it out.  I would have sat on the crapper all night if it meant having a better tasting drink.  It was, hands down, the worst thing I've ever tasted in my life.  Orange flavored salt water, and a LOT of it.  After 88 ounces in 2 1/2 hours, my body had had enough, and at that point, it was coming out both ends.  Fun!  BUT...it was all worth it because the colonoscopy, itself went great!  Dr. Weird Dentures found no cancer in the colon, none in the rectum, and zip in the butt canal.  The official PET scan results will confirm, but from what he could tell, the ass cancer was all external.  I know that doesn't sound like awesome news, but trust me, it's the best I've received in over a month...humor me! 

One-way ticket to Barf Town:

I know this was a long post, but it's been an insane week.  Now I will use the weekend to gear up to do it all again next week.  I know I sound like a broken record, but I truly have the most amazing support ever.  When the docs ask me about my support system, I don't even know how to respond.  It's so widespread and comes in so many forms, I don't think they'd have enough time in the day to hear it all.  The support I have received/continue to receive is so unbelievably comforting.  I wish I had time to come thank you all individually.  And Jen...I seriously couldn't do this without you.  I know no one else who would get in trouble by the radiation Sood with me!  ("This is *not* a joke."  *more giggles*)  I love you.

Exit only.

After today, I am 100% sure that I do not enjoy things being shoved in my pooper...not by me or anyone else.

Now that that's out of the way, onward to today's appointment which was with the colorectal surgeon (which is apparently how this whole process starts), Dr. Sollenberger aka Dr. Weird Dentures (really-really-strange-hard-not-to-stare-at dentures).  We started out in the office with a general overview of my history, and how this all came to be.  Then it was off to the exam room.  Now, I've never been to any sort of butt doctor, so I had no idea what to expect.  What I did not expect, however, was to be bent over an exam table, ass end up, and be subjected to first a finger, then a scope, just a few short weeks after surgery. 

After all was said and done, and I wiped the pain-induced sweat from my brow, Dr. Weird Dentures gave me the lowdown.  He said because the cancer is growing in two separate locations, and covering a large surface area, surgery (at this point) would entail removing the entire rectum and placing a colostomy.  Instead, he is recommending both chemotherapy and radiation to either shrink the cancer enough to remove it surgically or to kill it altogether.  He said in 80% of cases, the chemo/radiation is successful on its' own.  Worst case scenario is that it doesn't work, and then it's see ya later, rectum.  So long story, short, I will be starting chemo within the next 2 weeks or so.  I will have more information about that when I see the first medical oncologist this Friday.  I am also scheduled for radiation oncology, MRI, chest x-ray, another (second opinion) medical oncologist, and, you guessed it, a colonoscopy.  Just what I wanted...more foreign objects in my poohole.  At least this time I'll be sedated.

Cancer? Really? F*#@ You, Universe.

Let's say you're the universe...What do you get the girl that seemingly has everything?  The girl with chronic kidney disease, an odd combination of random autoimmune issues, and two years of dialysis and two kidney transplants under her belt?  I'll save you the trouble.  It's apparently cancer.  Well universe, you've messed with the wrong girl because ain't nobody got time for these shenanigans!

Here is how it all went down, and what I know so far.  I have been trying to make the most of my summer break from nursing school to get some things done that I just haven't had time for.  One of those things was my annual gynecology exam.  *What did you do during summer vacation?  Went to see my gyno, you?*  While there, the very nice, but very timid resident discovered a mass.  She was unable to tell what it was or where it was growing from, but determined that it did, indeed, have to go.  I was then scheduled for surgery.  While I was in a Propofol-induced state of unconsciousness, it immediately became apparent that the one mass was actually two, and that they were growing from the rectal area.  It must have been my lucky day, though, because there was a colorectal surgeon operating in the next room.  My surgeon, Matt (that's how he identifies himself when he calls...it always takes me a solid minute to figure out who the crap it is),  called extra surgeon over who confirmed that the masses appeared to be cancerous.  He advised Matt to excise whatever he could see, and call it day. 

My follow up appointment to get the pathology results was the following week, July 9 to be exact, but I had a gut feeling it wasn't going to be good news.  Jen did too.  Matt told us that the pathology confirmed their suspicions of cancer.  It showed squamous cell carcinoma, and Matt said I would need further testing to determine the staging of the cancer and possible treatment options.  He was hell-bent on me seeing this fabulous new specialist that was coming to Hershey, Dr. Poohole (not her real name, but her real name sounded a lot like poohole, so Jen and I thought poohole was way more appropriate).  Now, here's my problem with Poohole:  She's not even scheduled to start at Hershey until the 23rd, and probably won't even start seeing patients until the week after that.  So basically, Matt's message was, "Here's some cancer.  Can't tell you how bad it is, or how to treat it, but here, have some.  And you can wait a good 4 weeks to find anything else out". 

I waited to see just how long it was going to be to see Dr. Poohole.  I got the call yesterday, and they proceeded to tell me her first available appointment was August 8th.  August freaking 8th.  AND...they would not schedule any imaging tests to get done in the meantime.  At this point I was beginning to wonder if Poohole was really as amazing as I had been told, OR if because she is new they were just pushing new patients on her to fill her schedule.  Needless to say, after some thought (and several epic freakouts by Jen...still not sure she has fully recovered), I called Pinnacle Cancer Center today, and they were able to get me in to see one of their colorectal surgeons next Tuesday.  I'm going to keep the appointment with Poohole because I plan on getting a few opinions before starting any sort of therapy.

As some of you know, I have been feeling like crap squared since about March of this year.  This cancer diagnosis explains most of it, so in a way, it was kind of a relief.  Don't get me wrong, cancer fucking sucks, and I know I have a long road ahead of me, but I'm ready.  I am so lucky and blessed to have so many people who love and care about me.  Your kind words and concern touch my heart, and mean the world to me.  I hope you'll understand, though, how overwhelming this all is, and that it is difficult to keep everyone up to speed on an individual basis...hence the birth of this blog.  I will do my very best to update often with test results, appointments, treatments, funny stories, and anything else that may come up. 

Now...time to kick this cancer in the butt...umm, literally!