The good, the great, and the ugly.

Well, I've got good news, I've got GREAT news, and I've got sorta sucky news.  Normally I'd start with the great news, but since the great news requires you to understand the sucky news, I'll start with that one.

Short recap: insurance was denying the PET scan that Dr. Le (my oncologist) was requesting.  PET scan is the thing that checks for cancer.  Insurance said "No.  Only every 6 months, not every 3."  So, they were going to have to do a CT scan instead.  The problem with a CT scan is that it requires 2 things: drinking the most God-awful concoction that I have ever had, and then putting a contrast dye into my bloodstream.  Last time I tried to get this done (b.c.  haha!  Before cancer!  I'm so witty...) they couldn't do the intravenous contrast dye because my creatinine level was too high.  (Creatinine level measures basic kidney function.)  When they did the CT last time, it felt kinda pointless since the scan only showed a "thickening of the walls" in my small intestine.  That's it?!?!  For that massive tumor in my intestine, all it showed was a thickening of the walls?!?!  If that's all it can do without the contrast dye, I'll pass. But they were still telling me that this was the only test I could have.   However, they decided to double check, see how my creatinine was doing. So that's where we left off last time... Prayer to get approval for a PET scan. 

The sucky news is that my creatinine was significantly high.  My Nephrologist immediately ordered a 24 hour urinalysis.  I got to collect my pee for 24 hours.  Ewwww.... So, I got the call today about how that had gone.  Conclusion? My kidneys are only functioning at somewhere between 40%-50%.  Not renal failure, but not great either.  Of course I immediately googled what percentage renal failure was.  It is around 20%.  When it is approaching that, they start talking about dialysis and transplants.  I've already had 3 family members offer a kidney:)  My family rocks.  I feel VERY loved!  Next step: I am going in Monday morning to have an ultrasound of my kidneys.  Not sure what that does.  From what I remember last time I had that done (sometime in high school), the left one is sorta shriveled and gimpy.  I guess it's just a matter of finding out how much gimpier it has gotten since then.  

So, the good news is that the doctor that the kidney doctor who normally takes 6 months to see is fitting me in next Wednesday!!! Eaaaarly... (before school.  I'm sure I'll be all bright eyed and bushy tailed for class... cough... sarcasm...) On one hand, it's pretty awesome that he is getting me in so soon!  On the other hand... Should I be concerned that he's jumping on this so fast?  In my past experience, when they rearrange their schedule for you, it's not a good sign... But for now, I'll just chose to think it's because he likes me so much.

The GREAT news is that after haggling with insurance about how I can't have the full CT scan because of my kidneys, they have agreed to let me have the PET scan!!! Wooohoooo!! No nasty barium!!  I'm pretty stoked about that.  That will take place, also eaaaarly tomorrow morning.  (like be there by 6:30).

Between now and next Wednesday afternoon, I have 4 doctors appointments, and 2 procedures.  Phew!  It'll be a busy week!  Thank God for modern medicine!!

A raindown of blessings!

Well, it's been a very eventful week.  So, here are more of the details.  Like I said, the PET scan came up clear.  I feel so relieved.  I feel like I can sorta sit back for the rest of chemo and believe that anything else weird that I'm feeling really is just side effects of the chemo.  If it were still growing during the chemo, it would've showed up I think by now.  So, alllll is well.

The second good thing was that a huge burst cyst showed up.  Apparently it was too soon to show up in the CAT scan when I taken into the emergency room a few weeks ago.  I was really weirded out when they had "concluded" that it was just a side effect of the chemo.  I was terrified to go into chemo this week out of fear that it would happen again.  But, not only was it a burst cyst, but a really big one.  According to all the nurses, burst cysts are known to hurt like a... well I won't use the word that they used:)  Anyway, I feel a bit validated.  They are sending me to a ob-gen, to check it out and make sure there aren't more.  If there are, there really isn't anything they can do about it.  I'll just know that if it happens again, I won't have to freak out and think that I'm dying.

So, those were two blessings.  The second thing is in regards to finances.  I have heard of stuff like this happening to other people, but I haven't ever experienced it myself.  So, here goes: On Saturday night John and I rolled down the window of the PT and when we tried to roll it back up, it wouldn't go.  John took it into the shop, and it was going to cost about 300 bucks to get it repaired, because the part was so expensive.  The next day, the check engine light came on in the Honda.  John called to tell me that it was a bunch of repairs that were needed every 90,000 miles or so.  It was going to cost about 1,000 bucks.  This was going to be a pretty big hit for us, especially with me not working.  It wasn't going to totally tank us, but it was going to be a burden, especially around Christmas.  Anyways, here's where it gets pretty cool.  John gave two lectures at a recent conference, each of which paid about $90.  The school decided to match what he got.  So, that brought in an extra $360.  THEN!!!  John just called me today to tell me that he had gotten another "gift" from the school: $1000!!!  It was a $1,000 benevolence check.  It is amazing.  It covers the cost of all the car stuff practically down to the dollar. I've only heard of this kind of stuff happening to other people, but not us.  God really provided for us.  He is not giving us more than our "daily bread", but he IS giving us our daily bread.  Whenever we have some extra cost pop up, suddenly we get random money from somewhere.  I feel grace upon grace being showered upon us in this time.

So, that's the awesome news for now! 

Quick update: double yay!

I just got back from the hospital and from chemo for today.  I want to go lay down.  BUT before I do, I'll give you super duper quick overview of how awesome the appointment was today!  Double good news: 1) The PET scan was clear!!  No malignancies! 2) There was a friggin' huge ruptured ovarian cyst.  That was their original thought, and then they went to "Naw, it's just a side effect of the chemo" to which i said "Oh great, so this will probably happen again...".  But NO!!  Huge cyst.  Big rupture.  Lots of pain.  But probably not going to happen again!  Yay!!  I'll go into more details a bit later.  Right now, I have a bed calling my name.

Chemo postponed, PET scan done

So, I had my PET scan this morning.  I had stress dreams allllll night about it last night.  It was ri-di-cu-lous.  Needless to say, I was super tired.  But, the technician said (after I probed pretty hard) that if anything was there, it wasn't big enough to be obvious to him.  So, that has me placated for a while, at least until my appointment with Dr. Le. 

I had rescheduled my chemo to be closer to the PET scan time, so we didn't have hours of lag in between.  However, there was a snafu in communication with the receptionist.  She had called me back right after I rescheduled to say that since the PET scan results wouldn't be back in time, and Dr. Le didn't want to meet with me until the PET scan results were in (maybe "technically" couldn't meet with me until then?) that we would have to reschedule my doctor's appointment.  However, I didn't understand that the doctor's appointment and the chemo were a package deal; I can't do one without the other.  So, I showed up thinking I was going to just go straight into chemo and skip the doctor's appointment (which I normally have right before chemo).  But, I found out otherwise.  Part of me is annoyed, because I don't want to stretch the 6 months out (and because it throws off my schedule for next week).  Part of me is relieved because I have still been very weak this past week ever since the whole sickness last Tuesday before Thanksgiving.  So, I guess this will give me extra time to build up my stamina.  I was worried that this would throw off my schedule to make Christmas week a chemo week, but they said that we could skip that week.  So I'll be feeling REALLY good for Christmas!  I feel bad that I made mom come all the way down for the chemo and then just drive me back to my apartment though.  Coulda woulda shoulda.  At least I'll be feeling good for John's birthday! 

PET scan rescheduled

So, I rescheduled the PET scan for tomorrow, which I am really "excited" about because I REALLY don't like what my body has been doing.  There's about 5 different things that all mimic EXACTLY what was going on at the beginning of the year, and I don't like it.  I don't like it one bit.  I do NOT feel comfortable with it.  I will feel much more comfortable after getting the scan done, and having it come back clear, and having them say to me "Oh, all that really is just side effects of the chemo.  That, and you probably still have a food allergy.  THAT'S the pain you are feeling!"  To which I will reply "Great!  Thanks!  Yeah, I knew it was probably nothing.  I just wanted to make sure.  So, how do I test for food allergies?"  This is the conversation that I am planning on having.  Not another one.

I go in at 7:15 tomorrow for the PET scan, and I'll probably be out by 9ish.  I rescheduled chemo for 10, so that John and I didn't have a long break in between the scan and chemo.  I think I want to schedule all my chemo for 10 anyways.  I only did it for so late in the day before because I was still teaching.  It'll make it much easier to drive home NOT in rush hour traffic.

OH!!!  And everybody make sure to send John birthday wishes Thursday!  He finally catches up with me and turns 31!  I am SUCH a cougar...

Really sick

This week has been a week of extremes.  Wednesday was the worst pain I've been in so far, the weekend has been the best after chemo time I've had so far, and now, starting yesterday, I am the sickest I have been so far.  It is like my post-chemo days have gotten switched, and I'm feeling like it is the day after, but much worse.  Yesterday, last night, and today I have been fighting a fever.  This morning, I had the quintessential scene of laying on the bathroom floor in front of the toilet.  I had to post-pone my PET scan, which I really didn't want to do.  Right now, I'm wondering if I am even going to be able to make it out with my family for Thanksgiving.  It is going to really suck if I can't.  Thanksgiving, in my opinion, is absolute sacred Morgan time.  It is always the time when we have the whole clan together.  Please pray that this fever and this nausea go away.  I feel horrible.

Great day!!

So, I know the last few posts were kinda scary.  The last few days were kinda scary.  But as scary as they were, the clouds parted, and I'm having the best "after-chemo days" that I've had so far!  I was able to go back to our apartment earlier than usual.  I even went and did a service project with my church today at a place called "Exodus Ministries".  It was a lot of fun, mainly because I was with people that I love! (Jenise, Kendra, John C.)

On Wednesday, when I went in for chemo, I also met with my doctor.  Unfortunately, she affirmed all the research I had done: this type of cancer is known to be resistant to chemo, and yes it has been known to even grow or spread during chemo.  Yuck...  She didn't belittle me at all when I requested another PET scan.  She said that she would have to work it out with insurance, but if it would give me peace of mind, then it was important.  It will.  I might be being silly, but I don't care.  My body is acting the same way it did before, when I ignored it.  I just want to play it safe.  So, the PET scan is scheduled for Tuesday at 8:00 in the morning.  I am really not sweatin' it too much.  I fully expect for it to come back clean like it did before.  However, I am fully at peace if it does not.  Just rollin' with the punches:)

When I went to get unhooked on Friday, they gave me that shot again, the one that is supposed to make your bones hurt and give you flu like symptoms.  However, so far I haven't had much!  Just like last time!  I am feeling a couple of things (jaw's a little sore, body's a little achy), so it is slightly noticeable,  but not much.  I am super blessed because I have heard from so many people that have had uber bad experiences with this shot.   The only real side effects that I have are still from the oxaliplatin,  and they are all kinda funny ones - the muscle cramping (well, that one is less funny when it's in my calves and John has to carry me... like Friday).  But it's just kinda funny when it is in my thumbs. Then, I have that really strong pins and needles tingling sensation in my hands and feet, like the feeling you get when you have a body part that has gone to sleep.  That pretty much just makes me laugh though because, well, it feels funny:)  I can't remember if I've already written about these...  I think I said something in an earlier post...   Really, in summary, out of all the side effects that I could have, I think I have the best ones.  They aren't unbearable in the slightest.  I feel so blessed that I have not had the nausea.  I think there are a LOT of you out there praying against the nausea, and I've gotta tell you that I feel your prayers.  I feel them every time when I know I should be getting super nauseous, or I'm afraid that I will, and I don't.  That was my biggest fear starting out.

I've also heard from mom that some of you are memorizing Psalm 25 with us.  That is so cool!  It's like we are all connected now:)  Will, super excited about you and the other post men!  That's so fun:)  I love you all!  Time for bed...

Doing better

Well, I've  been discharged and am back at my parents house.  For all of you who called or texted, I wasn't able to get back with anyone because I hadn't brought my phone charger to the hospital (since I didn't know I was going to stay overnight).  It's charging right now.

We still don't know what it was.  I'm going to have a PET scan probably next week.  We had actually decided to schedule it before all this happened, so I guess it was good timing.  After I got the ER, they put me on some really good pain medicine.  After the medicine and a good night's sleep, I'm feeling back to my normal second day of chemo self.  (ie: exhausted, but not in pain.)  I guess please pray that the doctors could figure out what was going on.  They are moving away from the ruptured cyst explanation, although I'm still not convinced that it wasn't.  They are surmising that it is just a reaction to the chemo, but that doesn't make sense to me because I've had this exact same chemo three other times without any complications, and this came on suddenly, in a very localized area, and then went away.  Still fits everything you would expect from a ruptured cyst.

Thank you for your thoughts and prayers!  I am doing much better.  And for all of those who feel sorry for me for being in the hospital, let me just tell you about how much the hospital food rocks!  That is not being sarcastic.  The food is awesome.  I didn't take a pic of my breakfast, but it was a belgian waffle, scrambled eggs with cheese on top, and potato cube/hash brown thingys.  Here's my lunch and dinner:)

 Beef tenderloin with mashed potatoes and green beens with a side of mac and cheese (made with real cheese!) and angel food cake for dessert

 Chicken with mushroom marsala sauce, wild rice pilaf, and baby carrots and angel food cake for dessert Yum!!

Anne Korte Hamilton, this hospital food bragging was for you!  Hahaha!  (backstory: her hospital food sucks.)

Paranoia Research

It's 4 in the morning.  I am having a hard time sleeping.  I often have a hard time sleeping the night before chemo.  (sometimes because I just don't care.  I know I'll be sleeping for the next 3 days straight, so eh... whatever) The topic of this evening's musings: I've started experiencing some symptoms that I had had right around the time that we surmise the tumor was getting  bigger.  (ie: January - May or so)  I won't get all gross and say exactly what they are.  But they are there, and I haven't had them since everything was jacked up before the surgery. There's this part of me that is wondering, "can cancer actually grow, spread, metastasize or whatever DURING chemo?"  According to my research... it can. (Bomb drop here)  This is probably why I chose not to research all this when it was just going down.  I got to read a bunch of statistics regarding my life expectancy, and they weren't that great.  I won't tell you what so I don't freak anyone out.  I also read that small bowel adenocarcinoma has  a tendency to not respond all that much to chemotherapy.  (bomb #2)  So, if doesn't respond well, then there seems a liklihood that my "highly aggressive form of adenocarcinoma" could have spread, even during the chemotherapy.  I know I am being paranoid.  One tends to be a little paranoid at 4 in the morning when they have had the symptoms I've had for the last week.  I really am sure that there is nothing to be worried about.  I'm sure I'm just having some sort of GI snafu that is totally fine, maybe even just a side effect of the chemo.  Still....   I kinda want them to do another PET scan just to be sure.  They probably won't.  But I want one.  My body is acting goofy, and last time it started acting goofy, I ignored it and it blew up in a mid-stage cancer.  Sooooo I think my paranoia is at least a little justified.  It's not like crazy lady paranoia.  Right?  I'd have to get a LOT more cats to qualify for that crazy lady...

I'm going to try and sleep.  I'll keep reciting Psalm 25 (or as much as I've memorized so far).  I've gotta get CRACKIN' on that thing so mom and I can move on to Psalm 27 (also a very good one).

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.