Port surgery scheduled for tomorrow

They say it takes about 2 weeks to get over the effects of anesthesia.  I have been feeling its full force, but my parents keep telling me "two weeks Hillary.  It will be two weeks until you really feel like yourself, I promise."  Well, two weeks will be over tomorrow, so I thought I'd celebrate... by having another surgery.  Woohooo.  BUT whatever...

They are going to be installing my port that I will use during chemotherapy.  I guess there really isn't a good time to go under again, so tomorrow is just as good as any other day.  I'm just a little bummed because it seems like it's my last chance to feel normal before chemo, and I'm going to miss it.  Maybe this time, since it is a much more minor surgery, won't knock me out for a full 2 weeks. I hope...

So, tomorrow at 11:00 I go under again.  For anyone trying to come by or get in touch, I'll be going back at my parents house afterwards.  Thank God for my parents!  I don't know how I could get through this without them. 

Update: PET SCAN CLEAR!!!! Chemo plans...

Wooohoooo!  The PET scan was clear!  This was so huge!  Now that it's clear, I'll explain why it was such a big deal.  I didn't want to freak anyone out before, but if they had found anything anywhere else, it would have put me immediately into the stage 4 category with a 95% mortality rate within a year.  I didn't want to freak anyone out unnecessarily. But we are good! 

From here, I am waiting to hear back about installing the port.  Apparently, the port is something that they install under the skin that will just feel like a bump.  It's kinda like a permanent IV hole, but the skin actually grows over it.  The only stick I'll have during chemo is to puncture the skin covering the port.  But that's not bad.  It's not like having to dig for a vein that may or may not roll.  The port is installed via an outpatient surgery-like procedure.  On the up side, they do put you under, so I'll be out when they install it.  On the down side, I am already taking quite a beating recovering from this last surgery's anesthesia.  But this one should be much less gnarly since I'll only be out for about an hour, and not multiple hours, like the small intestine resectioning.

The nurse said that they were going to try to schedule for this Friday to do that, but might have to do it next week.   Chemo, as of now, is scheduled to start on September 29th.  It will consist of a 2 day process that I will do every other week.  First, I'll go into the cancer center at Plano Presbyterian hospital.  I'll always see my oncologist (Dr. Le) first.  Then, they'll hook up my port to one type of chemo and let it run for around 2 hours.  Then, they'll unhook that one and hook me up to another one for about an hour, hour and a half.  Then, they give me the third one, which I actually take home with me.  I'll get to sport a sweet little fanny pack for 46 hours, and then come back into the office to have it disconnected.  John's excited about decorating it.  I'm a little more skeptical as to the extent we can make it fashionable.  But maybe I could sew a couple of little cover bags to match various outfits.  We'll see.

Dr. Le is a bit worried about how my body will respond to the chemotherapy.  She is sensing (rightfully) that my body is much more sensitive than most.  That, and apparently thinner people have a harder time.  Since I just dropped below 100 lbs, she is expecting that I may have a bit harder time with the chemo.  She is prescribing me some mega-anti-nausea meds, so I am thankful for that.  She is really a sweet, caring doctor.  I like her.  Also, she presented that paper on my case at the conference, where the 8 other doctors looked in depth at my case.  They were all in agreement as to both the diagnosis, as well as the course of treatment, so I feel confident that we are doing the right thing. 

Some of the side effects that she expects will be nausea (of course) as well as a fairly severe cold insensitivity.  As she described it, I won't be able to drink cold beverages as it will "feel like you are swallowing glass shards".  Appetizing... I won't be able to reach into a freezer even at the grocery store!  So weird... But, we'll see what else pops up.  I hope that I don't psych myself into having some plethora of psychosomatic symptoms stemming from my own expectations of it being really gnarly.  My mind is excellent at wreaking havoc like that.

Anyways, that is the main update for now.  There was a whole lot more information, but this is long enough.  OH!  One more thing.  Apparently my "uncommon" form of cancer is SO "uncommon", that it is not even listed in the national registry of cancers.  They list like, everything, and mine is so uncommon that it didn't even make the list!  I knew I was special...

Update: PET scan and results to come back this Wednesday

I've got my appointment for the PET scan tomorrow super early in the morning.  This is the test where they look to see if there is any other cancer in the body.  For the most part, I feel that I have taken most everything in stride.  I haven't had too much worry or anxiety.  This is the one exception.  This one test is big enough to decide pretty much my whole fate at this point.  (I know that sounds a bit melodramatic, but that's kinda how it is).  For the first time, I am scared.  And part of me feels like I'm being silly because there is no reason to stress before I even know anything.  As the doctor has said, there is absolutely no reason to think that the cancer is anywhere else because it wasn't in the lymph nodes. My mind knows this, but yet I am still afraid. 

I wanted to ask a request from those of you who I know believe in God.  I won't ask anyone to do this again, and I wouldn't ask now unless I felt it was super important.  But, my request is for two things: 1 is prayer (duh!) But the second is for fasting.  If anyone feels led, could you please fast for me during this time as this test is THE most important one?  Please pray that there not be any cancer anywhere else in my body. 

For those of you who do not believe in God, I still thank you for walking with me through this journey.  You thoughts are felt over here, and you are also such a huge part in making me feel like I can handle this whole thing.  I love you so much.

So, after the PET scan comes the longest day and a half of my life.  At 2:30 Wednesday, I meet with Dr. Le to discuss the results. I was planning on trying to go to work Wednesday.  However, knowing what I do now, as in what test results I'll be hearing about, I don't think there is any way possible to just concentrate on work before hand. 

So, that is the update as of now.

Update: Where do we go from here?

So, we met with the Dr. Le (prounounced Lee), the Oncologist last Wednesday and Thursday.  My surgeon said that she was the best, and who he would take himself or his family to if one of them were to get cancer.  That was super encouraging.  She went over the diagnosis and some details of adenocarcenoma.  (details which I'll sort through later and maybe publish, depending on the appropriateness or level that I want to divulge).  The main thing that she let us know in no uncertain terms was how uncommon (not rare, uncommon) my particular case was.  The reason they had originally thought it was lymphoma and NOT adenocarcinoma (before the surgery) was because of it's size.  It was way bigger than adenocarcinoma usually is.  So size makes it uncommon.  Location also makes it uncommon as there are very very few found in the small intestine.  Adenocarcinoma is predominantly found in the Colon (large intestine).  So size, location, and finally my age, make this type of cancer extremely uncommon, which means there is a lot less research to go on when deciding treatment, odds, prognosis, etc.  One of the super cool things though, is that because it IS so uncommon,  she is actually presenting a paper on my case at a conference coming up.  What that means is that I'll have 8 (count em, EIGHT!) doctors all looking in depth into my case and diagnosis.  Talk about second opinions!  I'll have eight second opinions!  Super cool... 

My level of diagnosis is currently considered stage 2b.  There is 1, 2a,2b,3a,3b,3c, and 4.   So, 2b isn't as good as it could be, but definitely not as bad as it could be.  The main thing that classifies me as a 2b is the fact that they didn't find any cancer in the lymph nodes surrounding the main tumor.  This is huge, repeat HUGE.  I would have a much worse outlook if there had been any cancer in those nodes, because once it is in nodes, it is much much more likely to metastisize (ie: spread) throughout to the rest of the body.  Since the lymph nodes didn't have anything, best guess is that the rest of my body doesn't either.

So, the next step from here is to make an appointment to come in next week for another scan.  What they are going to do is shoot me up with a lot of glucose (apparently cancer is a total sucker for sugar.  Aren't we all?) The glucose will have some sort of dye mixed with it.  IF, repeat IF there are any cancer cells anywhere else in my body, they will show up under the scan.  The cancer sucks up the glucose with the dye, and then it is easily seen.  This is what I need the most prayer about.  For those of you who believe in prayer, I ask earnestly for you to pray for this.  I will be asking my close friends, and anyone else who feels led, to fast the day before or the day of.  I can't stress enough how important this test will be.  Again, we don't have any reason to believe that there will be anything anywhere, but then again, this is me we are talking about.  I don't exactly have a track record of following "norms". 

So, after that, when we of course find no trace of cancer anywhere else (please Lord God), we will talk chemotherapy.  The plan as of now is for me to wait about 3 weeks till I have totally healed from the surgery, and then start chemo.  Chemo, as of now, is planned to last about 6 months.  I am going to have something installed in me called a "port".  From what I can tell, it's like having a gas tank portal in your body where they just open the hatch and put stuff in.  On the up side, this means I won't have to get stuck every time.  On the down side... we're talking about a girl who won't wear EARRINGS because she's afraid they will get pulled or ripped or tugged etc.  Those are my ears.  This is like a hole in my body that could get tugged or torn or whatever.  I don't know if it is actually like that, but that's what it sounds like. 

The type of chemo (for all you google nerds out there) is called Fol-Fox.  Don't ask me what it stands for.  I'll post more as soon as I do my own research (which for those of you who know me, know it's only a matter of time...).  There is no telling how you will react to chemo.  They say everybody reacts differently.  I am praying that I just get really tired, and I'm not hovering over the toilet 24/7.  But we'll see.  Anyways, that is where we are going from here.  Thank you for all your calls and emails, texts, cards, etc.  They have made such a huge difference.  It is really awesome to know that I am not alone in this.  I love you all.

How I got here: History and how we discovered the cancer

So, here’ how I got to where I am.  We don’t know how long this has been in my body.  The doctors said it has probably been for some time now.  They guess about a year.  I’m thinking longer as there are several symptoms that I am hoping are linked to the cancer, namely the tendonitis in both my right hand and right achilles.  The tendonitis in my hand stopped me from being able to edit my pictures for quite some time.  The tendonitis in my Achilles finished the job, as I was unable to predict when I could walk.  I was on crutches every 2 months for over a year, and was on and off them less predictably for the year or two before that.  I am hoping they are linked because if they are linked, then that means they will go away after treatment.

I got a job as a high school teacher at the beginning of the 2009-2010 school year.  The first semester was mostly amazing.  However, towards the end I started getting really tired.  I assumed it was just regular teacher tired.  I also started experiencing some bowel irregularities that I just chalked up to stress.  (I won’t go into detail by what I meant there.  A little too personal!)  At the beginning of 2010, those problems started becoming more frequent, and I also started experiencing some mild abdominal pain.  Normally I don’t really pay attention to pain in my body, because it I did, I’d be running to the doctor every week.  Something has to linger around for a good month or two for me to start taking it seriously.  The abdominal pain didn’t go away, and I missed school twice thinking that I had the stomach flu.  In April, I went into one of the clinics on a Saturday, after missing school the day before.  That is the first day I remember thinking “hmmm…This abdominal pain is getting pretty bad.”  Unfortunately, I had used all my sick and personal days and didn’t feel like I could go to the doctor.  (a mistake from which I have definitely learned from)  I can’t beat myself up too much, because there is a liklihood that they still wouldn’t have found anything.  That Saturday in April when I went in to the clinic, they sent me to the emergency room at a local hospital to get a cat scan of my abdomen, just to make sure that it wasn’t appendicitis.  It wasn’t.  As the year progressed, the abdominal pain persisted, and John and I just chalked it up to probably having an ulcer from the stress at school.  Needless to say, I was pretty excited when school ended because I knew I could start going to a doctor to maybe check it out some more.  After Italy I said.

The previous times they had done blood work that spring, they had always told me “You are a bit anemic” and then gave me some number.  I didn’t know what the number meant, or what normal was supposed to be.  And even the records show that it wasn’t all too crazy anemic.  I’ve never taken anemia seriously because all I’ve heard of anemia is something some girls got with a heavy period, eat some red meat and you’ll be fine. 

Jump forward to the days after the last day of school.  I was finally being able to de-stress and relax, and it seemed to help the abdominal pain.  I figured again, “aha!  It for sure must be an ulcer.”  On the flight over to Italy it started hurting again.  When I got there, I told John “I feel like something ripped open again”.  When I was there, the pain started getting worse and worse.  At one point, I told John “I need to go to the hospital.”  The host family we were with called the pastor over because he also happened to be a doctor, thank God!  I was originally worried about my electrolytes, because I felt like I was about to pass out.  The doctor did some vitals, found nothing wrong, and told us he would take me to the lab for some lab work, just to be safe.  Here is where this whole process officially began.

He returned two hours after I had had the labs drawn, to personally give me the results.  He looked a bit somber.  He told me that I wasn’t just anemic.  I was extremely anemic.  I was in fact so anemic that were my count to drop even the slightest bit, he would have to do a blood transfusion.  This is when I finally decided that it was worse that I was probably thinking.  He recommended we take as flight as soon as possible, which we did. 

Upon arriving home, I immediately made an appointment with a gastrointerologist and told him the story, and that we were concerned that I might have an ulcer that was bleeding to the point of anemia.  He scheduled a duel endoscopy/colonoscopy to look in my stomach, and my large bowel (large intestine).  He didn’t find much except some rough patches in the duodenum (I think…) and 2 polyps which turned out to be pre-cancerous.  (I’m not sure what the difference is between pre-cancerous and cancerous.  I just know that they remove something that is pre-cancerous, and then check back in a year to see if there is any new growth.  Not that big of a deal)  The rough patches were something he had seen plenty of times, and pointed to what he believed was celiac sprue disease, which meant that I would have a gluten allergy the rest of my life.  I immediately went off all gluten  However, he was shocked to find that the biopsy for celiac sprue came back negative. So, after this, he scheduled to have something called a “pill endoscopy” which is the coolest thing ever.  They have made a miniature camera that you can swallow which goes through you, taking a picture every half second, and wirelessly transmits them to a hard drive strapped to you.  He called me back the next week to tell me that they have found something, or rather 2.  There were some sections in my small bowel that were all gnarled and raw and bleeding and that they more than likely pointed to Crohn’s disease.  However, there was also some things that seemed to point to a mass like structure, and he scheduled me for a CAT scan the following day.  He was also worried because some of the gnarled places were so bad, that it took the camera 20 minutes to pass through the first one, and an hour to go through the second.  He was really worried about me having obstruction, and immediately put me on a liquid diet.  He had me to a special blood test that would confirm Crohn’s, After the CAT scan, before we had even left the hospital, he had called to tell us that he was already with the radiologist looking at the scan and wanted me to come in for another one the next day.  After the second scan, he immediately called us again, and told us that he could squeeze us in for an impromptu meeting upstairs where he told us that the thickening of the walls were bad enough, that I needed to see a surgeon.  It was Friday, so the surgeon scheduled me for the very first appointment the following week.  He explained to me what they were thinking, and scheduled me for surgery that week to remove part of my small intestine, which took place that Friday, September 3, 2010.  That next Wednesday, they got the biopsy that it was cancer.  I’ll go into where we are now in the next blog so that this one doesn’t get too crazy long.