Friday, June 6, 2014

One Year of Poison...



Wow, it's hard to believe that today marks one year of being on the POISON.   All of this medicine is poison, but seriously, this stupid Tamoxifen has changed my life.  I know that I should be appreciative for the medicine because it has helped shrink Dezzie, but at the same time it is the reason I have so many issues.  It's so frustrating because I really didn't have too many problems until I started taking this medicine.  All of my issues have been caused from it.  Ovarian cysts, endometriosis, hot flashes, etc…. Then side effects develop and another medicine is thrown at me to take because of those side effects.  I am now up to taking 16, yes SIXTEEN, different medicines.  Ridiculous!  I always think of older people taking lots of medicine, not a 26 year old.  I'm just over taking all of this medicine.  I dread taking it every night because almost instantly after taking it, I'm nauseous.  But I have noticed if I forget to take a dosage, that later that night and the next day the hot flashes are HORRENDOUS! It's a lose/lose situation.  




It's hard not to think back on everything that has happened in this last year.  I remember going to my first appointment at City of Hope and crying happy tears because it was a much better experience than at Cedars.  We took the wrong turn going to the hospital and found a Sonic near by so we had to go to Sonic after my appointment to celebrate.  Now Sonic has turned into my "Good Patient Reward" and makes me look forward to going to the doctors.  But, it's just crazy how much my life has changed in the past year from being on this poison.  



I've had 2 sessions of acupuncture.  I actually fell asleep during my last session, which really says something about it because it is hard for me to relax.  I haven't noticed any relief with pain, hot flashes, or nausea, but shoot if it relaxes me and I'm able to sleep a little bit, I will take that!  She is on vacation this week so unfortunately didn't have it this week.  Wednesday can't come soon enough! (Partly because it's my next acupuncture appointment and it is also my next day off….) 

Luis and I at Santa Monica Beach 




Last week Luis and I had Friday off together, which hasn't happened in a looong time.  With him in school full time and working full time, he rarely has a day off.  It was such a good day!  We went to breakfast, went to Santa Monica Beach, and to Third Street Promenade and walked around.  It was hard for me to go to the beach completely covered up, but was thankful that at least got to go.  The beach is definitely my happy place.  






I will be traveling to Philadelphia in September for the DTRF Annual Research Symposium and Running for Answers 5k.  Please consider making a donation to "Team Kayla" to help find a cure for these stupid Desmoids so that others don't have to suffer from them.  Unfortunately since they're so rare, the only money raised for research is from what we fundraise. If you can join Team Kayla in Philly, that would be great too!  For info on the weekend, click here.  








Thursday, May 22, 2014

Trying New Things..

Me, my dad,
Kaitlyn, and
stepmom 
Me, my mom, and Kaitlyn



I just got back from a quick vacation.  I went home for my sisters college graduation.  It was good to get away for a little bit, but like always, the trip home went by too fast.  I still can not believe that she graduated college.  It seems like I just graduated yesterday.



It's less than half the size of
my phone
I got my TENS unit in the mail.  This little device is AAAAAMAZING!  I wish that I knew about it longer ago.  It is small enough that I can use it while at work, too.  I use it 6-7ish hours a day and have only had to charge it once.  I can't get over how good the battery life is. Because of the help with this nifty thing, I went almost 2 weeks without taking any pain pills.  I had to give in and take pain pills tonight because the pain has been so bad the past 2 days that I have been crying.  I hate taking the pain pills, but I also want to be able to relax a little bit and not be so miserable.  



The seeds on the pressure
points to help with sleeping,
nausea, and hot flashes
So I had my first acupuncture appointment yesterday.  It was definitely an experience.  I couldn't bring myself to look at the needles because it would've really freaked me out.  I will admit that it was nice and relaxing.  She turned the lights off and there was soothing music playing so that helped me calm down a little bit.  There were 21, yes 21, needles in my abdomen at one time.  I couldn't believe it.  Most of them I couldn't feel because I am still numb from my surgery, but there were a couple that did hurt.  She also put these seeds in my ear in certain places on the different pressure points.  I am to push on these 3-4 times a day for 3-4 days. The top 2 are to help regulate my sleeping and the lower/inner ones are to help with nausea and hot flashes.  I'm keeping an open mind and crossing my fingers that this helps.  If it helps with 1 of my 3 worst symptoms, I would be a happy camper.  She did say that acupuncture can be slower and that it may take several sessions so we'll see.  I am going every Wednesday for the next few weeks.  *fingers crossed!*



Does anyone have a preference for pharmacy?  I have been having so many problems with my pharmacy.  I am looking to switch and go to a different one, but don't know which is best.  Any input would be greatly appreciated! :)


I miss the life I had before Dezzie took over my life.  I miss working out.  I miss hanging out with friends.  I miss having a social life.  I miss having energy.  I would do anything to be able to do all of that again.  I have no life outside of work.  Some days it takes all of me to get up and to even go to work, let alone do anything after work.  I have definitely realized who my true friends are, though.  I know that not everyone can handle this, but they're not dealing with it personally.  It sucks, though, that these so called friends are no where to be found when I need someone, even if it's just to chat.  Hopefully one day I will be able to have my life back again.  But, I am thankful for my true friends.  I wouldn't want to be wasting my time with fake ones.  

Pain meds are kicking in, so time to relax and try to get a little bit of sleep, until the next hot flash hits…  I hope the next blog post is more positive.  I'm hoping to start feeling a little better soon.



Friday, May 9, 2014

Warning! Not positive...


You've been warned, the positivity isn't good in this post.

I had my second block done last week on Monday and should be feeling better by now.  They didn't put as much numbing stuff in this time so my legs didn't go numb. However, I was so much more nauseous this time. I was throwing up and couldn't keep anything down from Wednesday-Sunday. I would take numb legs over nausea anyday. I should be feeling good by now, but I'm not. 

I'm so sick of this. I'm sick of appointment after appointment and no one knowing what's wrong.  I'm over it. I'm sick of it.  I can't stay positive right now because I am in so much pain and nauseous again. I have been in so much pain that I have been crying even.  I DON'T UNDERSTAND. It's frustrating when I see 6 different doctors and no one knows. I wish I was able to get some answers instead of just being given another medicine. 

I feel so helpless, too. I'm so thankful for Luis. I can't get into or out of bed on my own anymore. He has to lay me down and sit me up. I feel so bad. There's no way I could get through this without him. He's a saint for putting up with me.  The other night I looked at my phone and it was 11:11.  I said to Luis, "11:11 make a wish".  He said "OK" when he was done.  I kept trying to ask him what he wished.  It took a little while but I finally got it out of him because he kept saying if he tells me his wish it wouldn't come true.  He said he wished that I wasn't in pain anymore.  That was my wish too.  I teared up because I thought that was so sweet.  




I can't believe that a year ago today I had my biopsy. It feels like just yesterday. It's hard to not reflect back on everything I have been through in the past year. I would have never thought I would be 25/26 and go through all of this.  Going into my biopsy I was scared, but I never thought I would get the results that I ended up getting. 



I had another doctors appointment today. It was a checkup from my block last week.  She doesn't want to jump into scheduling another block yet.  She is referring me to an acupuncturist because she thinks it could help with hot flashes and the pain.  At this point in time I'm willing to try anything.  She also added 2 more medicines to my loooong list.  She gave me an electrotherapy session, too.  It surprisingly felt good.  It's nice because it gives electroshocks and it is so small so it is something that I can wear under my clothes and use while I'm at work.  I would much rather use this little device than take pain meds.  My device will arrive Monday or Tuesday, so only a few more days.  She really wanted to take me out of work but I fought her on it.  I enjoy going to work because it gets my mind off of things.  I got way too depressed when I was on my leave and sitting at home doing nothing.  I just want to try to live as much of a normal life as possible.




There's part of me that is so fed up and just wants to quit taking all of my meds.  I hate that all of my problems are caused from side effects to other medicines.  When I say I am experiencing this side effect, I'm given another medicine.  Then that one causes a side effect so here's another.  It's never-ending.  There's several people that I have talked to in my support group that are taking the "wait and see" method.  I'm so close to seeing about going that route.  It really can't be good for me putting all of this poison into my body.  I just wish there was a known cure because I am so sick of this.  I just want to be done.


Sorry for being so negative, but I just needed to bitch a little bit…  Tomorrow will hopefully be a better day.


Saturday, April 26, 2014

Some Good News...

Sorry in advance if this blog post is all over the place, I blame it on the pain meds.  I am also going to apologize in advance because I can't guarantee that it will be a 100% positive post.

I had my 10th month of treatment CT on April 10.  I found out that Dezzie has shrunk a little bit (but I'll take any!) and that it is NOT taking over my small intestine, like previously thought.  So that is great news!  Therefore I will be staying on the Tamoxifen/Sulindac regimen for awhile.  I'm kind of frustrated because I am soooo sick of the hot flashes!  But, I know it's really the least intense of treatment, so since it's working it's best to stick with it.  

My main tumor oncologist told me that he's never seen results like I am having with the Tamoxifen/Sulindac.  He originally didn't agree with me having a hysterectomy, but he says now that he thinks removing my ovaries has been the best thing for me.  When I saw him in December he told me that my tumor wouldn't shrink all the way and that I would eventually need surgery to remove Dezzie.  However, he says now that it is possibe that it may shrink the whole way.  He really can't believe the results I'm having.  It's great to hear him say this.  The reassurance is definitely appreciated because it definitely wasn't an easy decision to have the hysterectomy.  

I still have my moments where I get all mopey and sad.  It's just hard to believe that I'm now 26 and I don't fit in with most other 26 year olds around me.  I know that I am pretty open about Dezzie on Facebook and Instagram and by having this blog, but when I'm at work I keep it to myself.  I don't want people to have "pity" on me because of this.  There's several people that I have gotten close to at work, but not comfortable enough to share all of this with.  I just feel like I'm so different than most people around me.  But, at the same time, I have gotten closer to others because they have similar stories.  I am thankful for that.  




I'm so fed up.  I don't understand why I feel like shit.  One of my doctors asked me what was on my mind the most.  I told him that I'm sick of being in pain and not feeling good.  He told me that he didn't understand why I'm not feeling well because Dezzie is shrinking.  I kind of chuckled and said NOONE DOES!  I'm just frustrated.  I can't tell you what I would do to feel GOOD again.  Not only have I been in so much pain, I've been nauseous and throwing up.  I just want to feel "normal" again.  I try to go and do things after work or have a life, but I don't have energy.  If I do too much, I am in so much pain and pay for it later.

I am having another pain block on Monday (April 28).  I can't wait!  TWO. MORE. SLEEPS!!!  It worked so well the last time that I'm excited to get another one done.  I know what to expect now after this one, too.  They said that they won't put as much numbing medicine in this time since it took awhile for my body to get used to it.  I can't wait to get it.  The pain is so bad again that I'm back to sleeping in a chair.  I'm not going to lie, I took sleeping in bed for granted before all of this happened.  One of my other doctors said that it is very normal to have to get the first 2 or 3 right after each other, but then my body should get used to it and not need them as frequently.  At this point in time, I'm just thankful that found something that is working; therefore, I'll continue to get them done as often as needed!


On another note….
I am planning to travel to Philadelphia in September to participate in a Research Sympossium about Desmoid Tumors and a 5k. Since Desmoids are so rare, the only money for research is from what we raise.  "Team Kayla" will be representing!  Please consider making a donation to support me….or come to Philly and participate with "Team Kayla" if you can! :)  The more the merrier!! http://www.firstgiving.com/fundraiser/KaylaBrooker/2014RFA  



….finally pain meds are in full force now! Time to relax now...


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
abdomen
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….