Monday, April 8, 2013

What it's like

WOW!

I did not expect to be "gone" for so long.  It has been over two months since my last post and believe me it is not because I haven't wanted to post.  I just simply haven't even been able to.

I have had the craziest experience the past two months as a result of the first (yes, I still have to get another treatment) of my Y-90 direct radiation treatment.  I have to be completely honest and say that so far out of everything this has been the hardest thing I have had to do since diagnosis.  Trust me, chemo was no picnic at all and it sucked just as much, but it was different.  Chemo snuck up on me and slowly created problem/symptom after problem/symptom over time, many of which I still deal with to this day.  It slowly ate away at me and my body, but radiation (at least the type I had) just bitch slapped me hard, caused intensive pain (I'm talking a definite 10 here folks) not even an hour after the procedure ended and continued for nearly two entire months!  As a result I have been so out of it that I actually could not function for about a month and a half.

No one can understand what it is like to have cancer, especially terminal cancer,  or to have to go through treatments (or not),  or to have to make the decision as to what to do in order to live the longest amount of time possible,  or just how much pain one can possibly endure...there are so many circumstances in life that others cannot understand unless they too have gone through it too.

THIS is why I think it is so important to share information and experiences.  To the best of my ability, I am going to try to chronicle the experience I have had since Valentines Day, the day I became radioactive.  Mostly I want to explain to everyone exactly what happened as a result of the Y-90 procedure I had done on February 14.  The reason I feel this is so important is because the reaction I had to the procedure was not a typical reaction.  I was informed (and research also showed) that most patients usually experience flu like symptoms about 3-5 days after the procedure that usually last around a week or so.  Not so bad I though....but then again from past experience from other treatments I knew that my rule of thumb is to take what they (the doctors) tell you and expect it to actually be about 3-4 times worse than what they say it will be like.  That has been my experience so far at least.  So I figured that I would most likely be feeling pretty icky and flu like for about 3 weeks.  Well, lets just say that is NOT what happened by a long shot.  I also have to let you know that sometimes this description could get a little too graphic for some so if you are too sensitive to TMI then you might want to skim some parts.

On Valentines Day my aunt and mom came down from WA to take me in to get Y-90.  We got there at 6:30 and after getting set up with an IV and some blood tests I was in the now familiar operation room with all kinds of crazy gadgets and instruments.  They transferred me from the gurney to the operation table and started getting me all settled in with blankets and oxygen while other people placed a bunch of sticky sensor things to which they would connect wires to monitor or view something.  I always joke around with them asking my usual "so who is in charge of mixing my cocktails today?" You always gotta get in good with your anesthesiologist :)  Many of them remembered me from my angiogram a couple of weeks prior and I am thankful that they are all very friendly and willing to listen to me nervously ramble and tell bad jokes.  They always warn you before they put you out saying something like "count back from 100" or "imagine your favorite place to be".  The next thing I know I am awake, still on the table with 3 or 4 people milling around while a guy is placing pressure (I mean really leaning into it too) on my groin which is the place they accessed my femoral artery.  The procedure is to run a catheter into my femoral artery and up into my liver to deliver radioactive beads directly into the large tumors.
Waking up
I get wheeled back into my room where I slowly shake off the sedation and access my situation.  They delivered blueberries, carrots, water and cottage cheese which I was elated to eat.  It tasted like heaven after nearly 12 hours without any food or water.  My mom and aunt had been killing time while I was in my operation and had now returned bearing gifts, smiles, kisses and hugs.  We leave and for the rest of the day I actually don't feel too terrible.  I think this lasted for about 12 more hours because the next thing I remember is about a two weeks later when I had to go to the hospital and get a CT scan because I was in so much pain and they were trying to figure out why.  I don't remember going to the hospital to get the scan, I don't remember even getting the scan.  Apparently my mom and gramma were there with me but I don't remember that either.  I do remember having lunch that day though but that is about it.

I was in so much pain from my procedure that I was taking 4mg of dilaudid every 3 hours!  This went on for about a month.  Dilaudid is the strongest pain medication they can prescribe in a pill.  The only way they could have given me something stronger is to put me in the hospital and give me an IV.  The dilaudid made me severely nauseous so I took lorazepam and zofran to keep from throwing up as much.  The lorazepam in combination with the dilaudid made me a zombie.  I literally don't remember much of February and about the first two weeks of March.  I know I was somewhat functioning because I have pictures of me visiting with friends and family who came to visit BUT I don't remember much of it at all.  It is like being drunk one night and the next day your friend tells you something that you did the night before and you are horrified that not only you did something embarrassing but that you also completely lost that time and you will never remember it or get it back again.  It is a horrible feeling.

At first the radiation made me feel like I had a really bad sunburn inside my body.  The lining of my stomach, my esophagus, my mouth, and my tongue actually peeled off and shed out through my mouth.  It was disgusting and it caused an enormous amount of nausea.  All of the skin on my tongue actually peeled off.  If I put my finger in my mouth and rubbed my cheeks and gums there would be nothing but a gob of skin on my finger.  My stomach and liver felt like they were on fire.  It felt like two nuclear reactors melting down in my liver.  The pain was so bad that I could not take enough pills to even make it somewhat bearable.  I am no wimp either when it comes to pain.  My liver on a good day is at about a 3 or 4 out of a 1-10 pain scale so for me 3-5 is normal.  One weekend sometime around the middle of March I started to feel a little better so I thought I would stop taking the dilaudid and try to manage my pain with oxycodone instead.  Big mistake!  I spent the twelve hours from 6pm until 6am in the most excruciating pain I had ever had in my entire life.  I did not know what to do. I had taken oxy so I could not take dilaudid as they could cause me to stop breathing (they don't mix).  I was basically screwed until enough time had gone by so that I could take another dilaudid.  I didn't want to call my mom in the middle of the night and get her all worried and I knew that if I went to the emergency room they would not be able to do anything better for me and on top of that I would also be in a cold uncomfortable hospital room.  I put an emergency call into my surgical radiologist who did the procedure.  He called back and was absolutely stumped.  He had no idea why I would still be in so much pain and said that short of admitting me to the hospital and sedating me to the point of barely breathing there was nothing that he could do for me.  He also tried to cheer me up a little by saying that the pain is most likely a good thing as it is killing cancer.  Well that was all fine and great but I felt like it was killing me too.
Luckily by about 6 hours later the pain had become manageable (to about a 6 on the pain scale) and I was scheduled to get an endoscopy the next day to make sure that they weren't overlooking something as simple as an ulcer.  The results came back from the endoscopy and everything was totally normal and no one still had any idea as to why I was in so much pain.
My grandmama and me
All of the pain meds I was taking ended up having some very undesirable side effects.  Anyone who has ever had to take pain killers for an extended period of time knows that they will constipate you like no ones business.  Now imagine taking heavy doses of pain killers for about 45 days.  I literally did not go #2 for 28 days!!!  The pain from the radiation was made infinitely worse by the pressure and discomfort caused from not having a bowel movement in almost a month.  I was literally on the sofa or in the recliner for about 50 days.  I had zero appetite but forced myself to eat if I could.  I lived on yogurt and boxes of organic butternut squash soup for weeks on end.  It hurt to do anything at all, to stand, to sit, to talk, to read and even to type.  Loud noises and multiple things going on at once sent me into a panic attack.  I couldn't drive anywhere. I had to rely on friends and family to take complete care of me.  I was literally helpless often not even having the energy to go to the bathroom or bathe.

It was only by accident that my pain meds got changed.  My insurance did not cover dilaudid and I had been paying for it for weeks.  I received a call from a nurse at my clinic telling me that my insurance would cover another pain med that was time release morphine and if I wanted to switch I could.  At first I was afraid that it wouldn't work as well.  I though that if insurance covered it, it must not be as good.  I decided to try it anyway.  I only needed to take one pill every 12 hours and I also got to take oxycodone for "breakthrough pain".  I gave it a try and boy am I ever glad I did.  It actually worked much better!  After about two weeks of taking this I got to the point about a week ago where I stopped taking them completely! Yay!!  I now am able to get by with taking an occasional oxycodone to manage my pain.  Which means I also get to be more independent and take myself to my appointments or to get groceries without having to rely on others to drive me.  It has been a slow process.  I have thrown up so much that my stomach and entire abdomen is extremely sensitive to touch or motion.  I have been trying to get out and go for a walk every day to get moving again.  I have even gotten on my rebounder one day for a little workout.  I get tired quickly though.  I only have a span of about 3-5 hours before I really need to lay down.

The surgical oncologist is ready to get me back in to do the other side (the left side) of my liver soon.  I am expecting to be back for round two in a week or so.  I think that I might be prepared a little better this time though so that maybe it wont put me down as hard or as long as it did the last time.  The left lobe of my liver is only about a third of the size as the right side due to it containing so much dead cancer from last time with little healthy liver left.  Since it is so small I am hoping it wont hurt as much :)

I have been very absent in the world of social media and very absent in replying to emails from followers.  Please know that I haven't been meaning to ignore any of you at all and that you are all on my mind.  I will try to reply as soon as I can.  It is just that I have not had the energy, mind power or body power to do so.  Many of you have asked me what my advice to those of you out there who have been diagnosed with CC would be.  Let me just say that I am in no way qualified to be able to recommend a doctor to you by any means but with that in mind let me also say that it is extremely important to find a doctor that you feel you can communicate with and who is actually working hard for you.  Don't settle for less, this is your life you are talking about here!  I also recommend that everyone battling cancer should seek out the professional opinion of a NATURAL DOCTOR in addition to a conventional oncologist etc.  And the number one most important piece of advice that I can give to everyone is this.  YOU ARE WHAT YOU EAT! It is that simple.  You simply must eat healthy food in order to provide your body with the tools it needs to heal itself and keep you healthy if you are going through treatments.  This one is not compromisable.  Lots and lots of a variety of vegetables including dark leafy greens.

So to make a long story even longer, this is it.  This is roughly what my world has been like for the last two months.  I really just wanted to share so that people out there like friends and family, those of you who might be thinking about getting Y-90 or those who are just plain old curious.  Information sharing is one of the most important things cancer patients can do for each other.  Knowledge is power!

In the meantime, stay healthy, don't stress to much about the future and try to be thankful for this moment because it really is all you ever have.

Oxxo!!

7 comments:

  1. Hell. Sounds like hell. You're one strong woman to go back. I know not everyone would, nor would I blame them. Here's hoping you don't even suffer ha,f of what you went through the first time.

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  2. WOW!!! I read it all word for word & I did not skim over anything. I began reading it to my hubby & he was so interested in all you have to say. He has been so tired lately he fell asleep half way through which I am thankful for b/c I know he will skip of his usual nitely pains. My hubby has the same as you do. Diagnosed on Jan. 4, 2013 & has had 8 Chemos. I am so happy you are still sucking this cancer out. I was praying for you b/c not one post from you. Today you replied to a fb inbox & it could not have come at a better time. I am thrilled to hear you fought this through & are ready for the next step. These are hurdles you are jumping. You must of been great at Gymnastics on that horse lol... keep smiling & motivating those of us that are following your every step. I will read it to my hubby when he awakes...Hugs & keep going b/c God isn't finished with you yet~ You will live for a very long life~ Libby~

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  3. Hi Laura,
    I just want to say that I am thinking about you and hoping you are doing ok. I, too, have cholangiocarcinoma, but have declined chemo and radiation. I've gone the organic, anti-chemical route since my Whipple in July 2012--but of course, it's back, now in my liver & lungs. Anyhow, please know that I wish you peace & much love.

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  4. Your site has been very helpful with the material you provided.
    It certainly seems to be informative to help other readers get a lot
    out of the content.I am looking forward to more future postings. Thank you very much

    ReplyDelete
  5. My sister is diagnosed with cholangiocarcinoma. I am trying to find any survivors stories and treatments, suggestions etc. I came across your posting on cancer survivors network saying you are cancer free, but it is not posted here. Is it true?

    http://csn.cancer.org/node/225468
    Aug 31, 2011 - 12:26 am

    My name is Laura York
    I was diagnosed with severe, extensive incurable, inoperable cholangiocarcinoma last March 2010
    Today I am in REMISSION!!!

    ReplyDelete
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    ReplyDelete
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