Day 1 of Chemo

Well, all in all, not too bad today.  The day started out fine.  One of my kids did something that kinda worked a number on me temporarily.  He's not a bad kid.  He doesn't know what is going on, so this wasn't on purpose.  Sometimes he just gets in moods where he doesn't want to work, and he'll start saying random answers like "pineapple", "blueberry" when they have nothing to do with the topic.  Today, suddenly he randomly made a cancer "joke".  (not really a joke, but a light-hearted comment of some sort).  Normally I'm pretty jovial and smiley, but I felt everything suddenly drain away, and I said softly "Don't make jokes about cancer."   He still looked a little defiant and said "Cancer kills, man."  I got even more soft and serious and said "I know."  I  think he could tell something was up at that point.  And unlike some 16 year olds in other schools, he didn't take advantage of seeing the teacher get upset and then try to keep poking at it for fun.  It was nice to see that he was sensitive enough to realize "Holy crap, something is up.  Don't bring up cancer again".  He probably just thinks that someone close to me has it or had it.  He didn't act up for the rest of the class.  I could feel myself start to tear up at one point (we were about 20 minutes away from me leaving for chemo).  I just had to excuse myself temporarily and collect myself.  I never fully got my game back, but thankfully it happened in the last 20-30 minutes of class, and not in like, the first 5 minutes.  (We have 2 hour sessions)

John met me at school, and took me to the hospital where mom was waiting for me.  Then, like the amazing husband he is, he went out to get me a "last meal" of sorts: all sorts of fantastic-ness from "On the Border".  Salsa, chips, enchiladas with sour cream sauce, some kind of gordita... He is awesome.  Dr. Le met with us for a little while to tell me what to be expecting.  My friend Anne has been going through chemo, and she said that they had told her to expect the nausea and side effects to start on day 11, which they did.  Unfortunately, I don't get quite that much lag time.  Dr. Le said I should be feeling them by tomorrow, if not tonight.  I already have started feeling the cold sensitivity.  It's hard to describe, but it is an interesting sensation.  It's actually kinda cool feeling.  I'm sure the  novelty will wear off.

When they put me in the back with all the chemo patients, they hooked up my port, and then the lady said "Now, this might make you a little bit sleepy..."  Aaaaaaaand that's the last thing I remember for about 2 hours.  Ha!  I think I needed a nap.  I think my sleep's been a little spotty lately.  Can't imagine why... When I woke up, I still had about 2 hours left, so I was able to talk to a close friend from Hawaii that I had lost touch with, and then played some words with friends with Mom.

I'm back at her and Dad's place right now.  She and I were just watching some TV, when all of a sudden I could feel the queasiness starting to descend.  I don't think it is too bad yet.  I took one of the less powerful anti-nausea pills so I can save the big-guns for when it is getting really bad.  I'll keep them by my bed tonight, just in case.  I think I'm going to go to Mom's Bible study tomorrow, since all the women supposedly want to meet/see me.  THEN!!  Mom is being awesome by taking me all the way to Fort Worth to have this one place give me a hair cut.  I haven't had one in over a year.  They are the best salon I've ever been to hands down (It's called "Cut Hair Salon" in Fort Worth) They are amazing)  I want to get a little bit better cut because.... Yay!   A photographer friend of mine from Fort Worth is going to do a shoot for John and me.  We haven't had any photos done since our wedding, so I figure now is the best time.  I also wants some pictures of me before I start looking all scary-like.  So, that's the motivation for the new 'do.  On Friday, I go back in to be unhooked from this current drip that I have to wear for 44 hours, and then Saturday, Tracy Autem Photography is doing a shoot with me and John.  It'll be different being on the other side of the camera.

So, that's the update: emotional beginning, sleepy start, good conversation, Bible study, hair cut, unplug friday, fancy photo shoot saturday.

OHHHH!!  And the most important tid-bit:  Yes. Yes I am rocking a fanny pack with the stuff attached to my chest.  And yes I am accepting offers to sew/bedazzle/bling up one the worst fashion faux-pauxs of all time and bring it back to sexy.

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.