Tuesday, March 25, 2014

Some Answers...

Before I get too far into this, I want to do a quick update from my previous post before I forget.

Hard to see, but
my ankle was swollen and
bruised from when I
fell at work.
It was a rough week before I finally started to feel somewhat better after my block.  My legs kept getting more and more numb.  It was the most bizarre thing.  I fell in the shower on Thursday morning and fell going up the stairs at work on Friday.  That was my final straw.  I called the doctor on Friday and she did say that they put such a high dosage in me that it might just be taking my body longer to get used to it.  She wanted me to wait and see how I felt over the weekend and if it didn't get better than would see me in clinic again Monday.  

…..I don't want to jinx myself, but I feel like the block is actually helping!!  I haven't been in much pain and couldn't tell you the last time I had my stabbing pain attacks.  Also…… I HAVE BEEN SLEEPING IN BED FOR OVER A WEEK STRAIGHT NOW!!!!!  I don't know when the last time I slept in bed was!! Also, the new medicine that she had me start knocks me out SO HARD AND SO FAST!  IT'S WONDERFUL to finally sleep.  

Last week I met with a GI specialist.  He thinks the reason I've been so nauseous is related to one of my medicines, Sulindac.  He thinks it is destroying my stomach lining so he added another medicine to my routine.  I take it 30 minutes before breakfast so it will hopefully coat my stomach and help with the nausea.  He also ordered an EGD (where they go down through the throat with a camera and look at the insides) to check the inside of my stomach and see if there's anything out of the ordinary.  He also noticed that my hemoglobin levels are really low.  He doesn't really understand why none of my other millions of doctors have done anything about it.  When I first started at City of Hope, it was at a 12 and the last time I got bloodwork was 9.1.  Nothing has been done about my levels yet, until after my tests.  He wants to go step by step and rule things out first.

Fast forward a week…..

I love looking at my tattoo.
Especially when I am all tied
up to machines. It is my
daily reminder. 
I don't want to jinx myself.  But I am actually feeling well from the block and haven't been near as nauseous.  There's been a couple of nights where I have been, but it hasn't been all day like it was previously.  

I had to be at the hospital at 6:30 a.m. on my only day off this week and had the EGD this morning.  It's really sad when the nurses that work in the area where these procedures/minor surgeries are located get to know you.  This was my second time going under anesthesia in 14 days.  

They saw a little bit of inflammation in my stomach and took a biopsy of a couple areas.  But the bigger concern is with my small intestine. It looks like my tumor is now engulfing my intestine and either pulling or twisting it and kind of making it look like a black hole.  

This is what the small intestine is
supposed to look like...All nice and smooth

But this is what it really looks like...
Again what it really looks like.

I have to get ANOTHER test done where I drink the barium and get X-rays while my body digests the barium.  I am getting this done April 3.  They definitely want me to get this done before I see Dr. Trisal, my main Desmoid Tumor doctor because he is the surgeon and unfortunately surgery might be in the picture a lot sooner than originally planned.  

I'm so thankful for the doctor that referred me to see a GI doctor.  Otherwise I would still be wondering what's going on. But I'm so scared for what is going to happen next.  Trying to stay positive.  My throat hurts really bad right now, too, but I'm sure that is expected.

Tuesday, March 11, 2014

Fingers crossed...

Getting ready for surgery..
a bit nervous!
Well, I had my celiac plexus block yesterday (Monday).  I'm not feeling as well as I was hoping to feel after.  I had done some research Sunday night/Monday morning because I couldn't sleep because of the nerves and came across a few people who had said they felt instant relief.  So I was hoping for that.  The doctor said that I would feel worse before feeling better and that it would probably be around 4 days before I started to feel anything.  The side effects to this are nausea (oh joy!) and numb legs.  I am keeping my fingers crossed and not giving up hope yet!  

Right now my most pain is in my back where they went in.  I have 2 spots on my back.  The dressing is still on them so I haven't seen it yet.  I'm curious how big it is and if it will scar so that I will be able to continue connecting the dots now onto my back.  Many people collect different things; I have been collecting my arm bands that I get every time I go to the doctor or hospital.  I think I want to add to my "collections" how many different scars/battle wounds can I get from different surgeries.  

I was supposed to go back to work today but I'm not feeling well at all.  My legs are real numb and my back hurts sooo bad.  I am limping and walking real slow when I have to walk somewhere.  I am also very tired because I didn't sleep good at all.  I would sleep for about 30 min-an hour then be awake for awhile, even with taking pain meds! I can't get comfortable and I'm very restless.  I'm thankful that I am scheduled off work tomorrow because I have a doctors appointment, so I don't have to go back to work until Thursday.  This way I can hopefully relax as much as possible and hopefully get some sleep today and tomorrow. 

Tried to show how big
it really is.
Takes up half of my
I forgot to post in a previous blog post a picture of how big the Lidocaine patches are!  They're almost as big as my iPad!  I haven't really noticed a difference with them, but I continue to wear it just to be safe.  I have to wear it for 12 hours, take off for 12 hours, then back on for 12 hours, etc.  When I told the new doctor about these patches, she instantly said she didn't think they would work.  But, I am still wearing them just to see, especially if it would start working so that I can get a little bit more relief while I am at work. 

Flowers delivered to work
from my Store Manager
and associates.
Flowers and ballon, dinner,
cupcakes, and VS PINK
hoodie from Luis.
Thank you to everyone who made my 26th birthday so enjoyable!  I know that I was not looking forward to it at all, but it was definitely a good birthday!  Also, on the bright side, I will continue on my stepdads insurance on COBRA which eases my mind a lot!  Therefore, I'll have my work primary insurance and my stepdad's as a secondary for another 18 months!  A HUGE SIGH OF RELIEF!

My pills I take at night. 12 at
night and 7 in the morning.
This doesn't even include when
I take pain pills, either!
I know I said in a couple blog posts ago about how I am nauseous a lot at night.  Well, unfortunately, the nausea has gotten worse.  Especially starting Tuesday night (my birthday) through Friday.  I was vomitting so much and unfortunately still had to be at work and everything.  I had a big breakdown when I came home from work Wednesday night.  I went and changed out of my work clothes and just sat on the bed and started balling.  Luis heard me and came in and asked me what was wrong and was trying to comfort me.  I kept telling him I'm so sick of being nauseous, in pain, and the horrible hot flashes.  He finally calmed me down and made me some toast and I fell asleep.  But, I did tell him that there's no way I can take my medicine that night.  I DREAD taking my medicine every night because it makes me even more nauseous.  It's almost immediately after taking my medicine that I start feeling like that, too.    

Friday, February 28, 2014

Scary update...

I met with the new doctor this morning.  I really enjoyed her.  She seemed very knowledgeable and actually was able to give me some answers as opposed to other appointments where I didn't know anything.  

I'm not going to lie, I'm so scared and nervous for what is ahead of me.  But, I'm also a little relieved to finally have gotten some possible answers.  

So she thinks that the stabbing pain is a result of my small bowel twisting.  Then when the stabbing stops, it's because it's untwisting itself.  I asked her if that would show up in the CT or MRI.  She said that the only way it would show up in either of those would be if it was twisted at that exact moment.  Otherwise wouldn't be able to tell.  But, when I had both of those tests done, I wasn't in very severe pain.  She is referring me to a GI specialist (yes, another doctor--make that 6 doctors that I am seeing now).  She wants them to check it out to be safe.  Since my tumor is pressing on my small bowel, it's something not to mess around with.  If this is the case, there will definitely be some scary times ahead for me.  It's highly possible that I will need to have Dezzie removed sooner rather than later. 

I will be having a minor outpatient surgery on March 10.  It's called a Celiac Plexus Block.  Basically they will go in through my spine and insert numbing pain medicine into the nerves.  If this works, I will get this done as frequently as needed.  I sure hope it works.  I'm scared for it, but I'm willing to try anything.

She also changed one of my medicines that will hopefully help with the nerves in the gut as well.  I told her how I'm so nauseous every night too so got some ideas to hopefully help with that.  Aye yi yi…

What a way to spend Rare Disease Day by being at the hospital all morning!

On another note…. I'm especially having a hard time getting out of this funk.  I know I should be happy that my birthday is Tuesday, especially now.  Birthdays and holidays have a whole new meaning now.  Don't get me wrong, I am very happy and fortunate to be able to celebrate another year.  However, I will be 26 so I will be losing my secondary insurance.  If it was any other birthday, I would be happy.  But I dunno, I'm just so blah….

Wednesday, February 26, 2014


I'm so frustrated.  I had to wait a little bit before writing this blog post because I needed to calm down.  I just want answers.  

I had to be at the hospital at 5:30 this morning!  I thought they were being funny yesterday when they called to have me come in earlier.  I had blood work at 5:30 and a MRI at 6:30.  Then I saw the doctor at 9.  

I have to be honest.  The MRI was actually enjoyable.  Well, as enjoyable as a test can be.  I usually don't like MRI's because I get so claustrophobic, however they put some sort of contraption over my head and connected a mirror to it that was at a special angle so I could see a TV on the outside of the tube.  They put "Despicable Me" on to watch, too.  I have never seen the movie, but now I want to.  It definitely made the time go by faster and made me forget about being in a small tube. They put headphones on me too to cover up the loud noises.  If you haven't heard the noises a MRI makes, watch this.  Unfortunately due to the location of my tumor, I had to hold my breathe for 15-25 seconds at a time, too.  Otherwise I probably would have fallen asleep. Oh and I didn't have to drink any sort of nasty drink beforehand so that made it even better!  If only a MRI wasn't a lot more expensive than a CT, I would request a MRI every time...  

But, unfortunately, the MRI didn't show anything.  I mean, it's good that it didn't show any sort of new mass or anything, but still it's so frustrating because I just want answers.  The doctor is getting worried that the endometriosis is growing in the hysterectomy incision.  He says it's very rare….but everything about me has been so rare.  Unfortunately, endometriosis won't show up in any sort of test.  Therefore, there is a good chance that he might have to do another laproscopic surgery soon to see what's going on.     

They prescribed me a lidocaine pain patch to try.  I'm hoping that this helps, especially because this is something that I would be able to use while at work for some relief.  I'm willing to try anything.  The lidocaine cream didn't work, but they say that this patch is a stronger dosage and should seep into my skin.  

I get a little frustrated because it does seem sometimes that their solution to everything is "here's some more pain pills".  I try not to take pain pills unless I am in horrendous pain.  I don't like the side effects at all.  I want to try to live as normal of a life as possible.  But how am I supposed to do that if I'm doped up all day errday?  Although, I don't even know what "normal" is anymore…

Oh, and guess what.  I got referred to ANOTHER doctor.  So, that makes it FIVE doctors that I am seeing now.  Aye yi yi.  I will see this new doctor on Friday.  She is a pain management doctor, too.  But she specializes in doing more with long term pain treatments/shots/etc.  Hopefully she's got some sort of solutions.


Wednesday, January 22, 2014

So Fed Up...

I am so fed up.  I'm just over it all.  I try to stay positive, but I'm really struggling with that right now.  

Last week on Tuesday (1/14) I saw my gynecological oncologist for a check up from surgery.  I told him that I still have ripping pains and the pain in my lower pelvic.  I am really nervous that the endometriosis is coming back.  They said there was a very small chance that it could come back.  It wouldn't surprise me because that would be my luck that it would come back.  I haven't had good luck with anything else, so it wouldn't surprise me.  He told me that he wanted to keep an eye on it.  He scheduled me for another appointment in 3 months, after my next CT.  But he said if my pain got worse to call and get in sooner.

Well, never fails, 2 days later I get horrible pain.  I woke up Thursday (1/16) and couldn't believe how much pain I was in.  It was a different pain.  More like a stabbing pain.  It was on the left side right above my incision.  It was so bad that I couldn't bend down or stand up straight.  It was even so intense that I had to leave work early and went home and took pain pills.  I hate taking pain pills, I only take them if I'm in lots of pain.  I went into work late Friday and took it easy the whole weekend.  I felt really good on Sunday.  But then Monday (1/20) I was at work and all of a sudden at about 2 p.m., I got these horrible pains again.  Out of nowhere.  The only thing I could think of was because I was busy at work so I was walking around fast and bending down a lot.  

I ended up calling my doctor Monday afternoon because I knew that this wasn't normal.  I shouldn't be having pains this bad this far post-op.  It's been 23 weeks since my surgery.  Unfortunately, I never got a call back Monday.  So I tried again Tuesday morning.  The first person I talked to wanted me to go to the ETC (City of Hope's version of ER).  I told them I did not want to go there because when I went there before nothing was accomplished.  I wanted to see when I could see the doctor next.  His P.A. ended up calling me back and first she brought up me going to the ETC and I turned her down as well.  She went and talked to my doctor and they were able to get me in Tuesday night.  

Just my luck, just like every other problem I have had.  They do not know what is wrong with me.  They think it is something muscular/skeletal.  Everything about me has been puzzling to my doctors.  He said that if I had increased the tamoxifen, he would connect it with that.  But I have DECREASED the tamoxifen, so I should be feeling better by now.  

So I will be seeing another doctor to see if can get some answers.  Ughhhh so frustrating.  

Tillllll then, I'll just veg out and take my pain pills...

Thursday, January 2, 2014

3 More Months...

Just a quick update from today's appointment.  I saw both my medical and surgical oncologist.  I hadn't seen the medical oncologist since my very first visit to City of Hope in June.  

I went into this appointment all mentally prepared for chemo being the next step.  I was all ready for it.  Simply because I am so sick of being miserable.  I do not sleep at all.  The hot flashes have gotten so much worse.  All day and all night.  

Well, my medical oncologist didn't want to switch to chemo yet.  Since the Tamoxifen/Sulindac combo is working, he doesn't want to go to something that isn't guaranteed to work yet.  But, my dosage did get lowered.  They changed it from 6 pills to 2.  And added another medicine, Effexor, to hopefully help with the hot flashes.  

I was kind of frustrated because I tried asking for a lower dosage in August and my surgical oncologist instantly said no.  But on the plus side, they did think that the tumor had gotten softer than the previous visits.  

I have mixed feelings about how today went.  I mean, it's good because the Tamoxifen/Sulindac is working and it's good because it is a less invasive medicine.  But, I'm just frustrated.  I'm sick of being miserable.  I was just ready to start the chemo because the chances of it shrinking faster were much greater.  But they're the doctors, they're the experts, I trust them for that reason.

As long as I'm feeling ok the next 3 months, I will continue with 40mg of Tamoxifen (versus 120mg), Sulindac, Gabapentin, Clonidine, and newly added Effexor.  I sure hope get some relief with this!!  I go back in April for another CT scan and will see both of my oncologists again.  

My sister sent me a care package and included a journal in it.  I have been trying my best to write in it everyday and including something positive that has happened that day.  Some days I really have a rough time doing it, but I'm working on it.  It's my outlet.  So far, my high points in most of my days have something to do with work.  Only because that's all I do.  I go to work and put on a fake act because those around me have no idea what I'm going through. Then I come home and lay in my chair because I am just so exhausted.  I'm trying my best to stay positive.  Keyword=trying.  

Here's to a new year… can only hope it is better than 2013.  I will never ever forget the year 2013, when my life changed forever.  

Thursday, December 19, 2013

More Thinking To Do...

Well, I had my 6 month CT scan and saw oncologist today.  Unfortunately, the day didn't go as well as I was hoping for.  Dezzie has shrunk a little bit. It was 66x59 in the last scan and now it's 64x52. But it's still really hard. He said that could remove it now. But it's my decision. I have 3 choices: stay on tamoxifen, start chemo, or have surgery. They're going to present it to the tumor board again with the updated tests and see what they say. I will see both my oncologists January 2 to discuss the next step. I have lots of thinking to do. He was totally against Nexavar (the oral chemo which is what I was really wanting). He wants IV chemo. It would be done every 3rd week for 6 months and then have another scan and then see. I'm not sure I want to have surgery yet cuz there's still 30% chance of needing a bowel transplant. That's still a high risk. Not sure what to do.

Stay on Tamoxifen and be miserable 24/7?  Or start chemo?  The chemo would be every 3 weeks.  The week I got it, I would feel shitty, then feel good for 2 weeks.  Dunno what to do.  So many pros/cons to everything.

I am so sick of making decisions.  Can someone please just make the decision for me.  

I'm just so blah right now.  I can't even think right now.  I will do another update later after I have a chance to gather my thoughts some.