Healing...with pain

I am almost 5 weeks post surgery.  I've been back to the clinic twice for "wound checks" on my section of incision that opened up.  It is getting smaller.  I can't get any gauze to go beyond the part I can see (so it is closing in).  It does bleed a bit when I pull the gauze out now.  The Doc said this is a good thing.  I'm supposed to loosely pack it now so that it will fill in (heal).  The rest of my incision looks great.  A bit like a zipper.

I quit taking the narcotic pain pills two or so weeks ago and have quit taking the other med except at night (to help me sleep--it is an anti-inflammatory, not a sleep aid).  I only have a few left so I'm going to just take one at night instead of two until they are gone.  I do have pain.  Pulling-sore-ripped muscle kind of pain.  It feels like I just need to stretch and stretch and stretch!  I do stretch a little.  It feels good.  I'm also getting a wrap-around pain if I am on my feet too long (or for longer than 15 minutes).  The pulling pain wraps around to my back and goes down into my hip.  I'm pretty sure this is nothing to worry about.  I'll probably have a lot of weird aches and pains for months (possibly forever if I'm to believe my oncologist). None of this pain is unbearable.  Just uncomfortable.

From my last surgery, I know it will be 12 weeks before I really feel more like myself.  I am getting better every day though.  I'm even working from home now and will be going in for part of the day on Thursday and Friday this week.  Next week as well and I'll build up to full-time.  I cannot afford to stay on short-term disability. 40% pay (mine is 60% less taxes) doesn't cut it when you live paycheck to paycheck!

I just ordered me a I Am A Liver Pillow. I've wanted one since I first saw one but didn't know where to order one from.  I found the website: http://iheartguts.com/shop/  they have all kinds of organs!  T-shirts too!

More surgery details

I'm not sure how much "detail" anyone really cares about but if you're looking at having liver resection surgery, then I can tell you about my experience.

After my surgery I was in ICU.  Like I said earlier, no NG tube, no drains.  I was thrilled I didn't have a drain.  ICU was pretty uneventful..  Of course I had a super cute young guy nurse and aide.  Both guys.  FUN.  The nurse made a comment to me that perhaps I took the wrong way but he said" I don't even know why you are here".  I took that as --we need the bed for someone sicker.  Maybe he meant if as I was doing so good, I didn't need to be there.  I don't know but it was my only negative experience while in the hospital.

They moved me out of ICU the next day and info a regular room.  My sisters came up and saw me for a while.  I started to feel "queasy" and even though they had put me on a clear diet, I was able to drink the broth or anything.  I thought it might be the morphine making me sick.  I had a few moments with my right-hemicolectomy where a got sick but this was much worse.

I ended up vomiting a lot of bright green bile on Saturday.  I really felt terrible.  I had the best nurses and aids ever.  They were all wonderful.  My night nurse on Saturday had only worked with cancer patients her entire 23 year career.  She thought that this motion sickness patch might help me.  They were giving me other stuff too.  My problem was my stomach wasn't emptying and the bile was building up in my tummy.  I even considered having an NG tube put in.  That is how bad I felt. They didn't do it and by Sunday morning it was like someone flipped a switch.  I felt so much better and even got to eat some mashed potatoes!  Of course, they were getting me up to pee and go walk during all of this too.  Not a lot of walking but sitting in the chair, etc.  I had a few visitors. The weather was terrible on Saturday--lots of snow and wind.  My sisters spent most the day hanging out with me. 

I had regular visits from the surgeon and his team of fellows.  Nice guys all but I couldn't pronounce any of their last names! 

I lost a staple during my first shower.  I heard it ping off the floor.  The docs weren't too concerned.

I was doing so well they said I could go home on Tuesday and they started to wean me off the morphine.  I started taking ocy and something else.  I didn't have a lot of pain.  More like I had pulled all my muscles under my right breast.  It hurt to breath and I couldn't take a very deep breath without it hurting.

I came home that Tuesday so only 6 days in the hospital.  5 nights.  Not very long for liver surgery! 

My niece counted my staples.  I have 30.  Unfortunately, my incision came open where I lost that staple.  I think my dog stepped on me (I didn't have my pillow protection on my stomach). I think it might have pulled it open.  I thought it was infected.  Went in on Monday and saw one of the "Fellows", which was a woman this time--another last name I couldn't pronounce.  She saw no signs of infection and only the skin was open, the facia was not so no possible hernia brewing.  I was glad.  It looks really, really gross though.  I have to pack it 2 x a day with gauze wet with sterile saline. This helps it heal from the outside in.  I have since had some low-grade fevers and I should have called them but I really didn't want to go back in.  If it were an infection, they would come and go, right?  Guess I'll find out because I go in today to get the remaining staples out.  The rest of my incision looks really good so I'm sad I had this blow out.  It'll leave a bigger scar.  It also hurts pretty bad so I hope it's still not infected. 

Quick Update on Surgery

I can't believe I've been home for almost a week!  It'll be a week tomorrow.  My surgery was not quite as we planned.  Instead of taking my entire right lobe, he cut out the biggest tumors. He did take a few sections from the left lobe that had the biggest tumors and then did RFA on a few.  I was actually pleased with this news.  It has made my recovery much easier and should give me those extra years we were hoping for.

I did on have any drains when I woke up. No NG tube.  I really didn't feel too bad.  They did take me to ICU for one night to keep a close eye on me.  A few days later I asked Dr. Kim if he had any trouble with my blood pressure or "stats" during surgery and he said I was "steady eddie".

When I arrived in pre-op it went a little crazy as I was the last patient they took back (not my fault--I was on time along with 30 other people) and they were ready for me!  I had two anesthesiologists, 3 of Dr. Kim's Fellows, two or three nurses, all doing stuff to me.  IV's, blood, EKG.  I did ask the anesthesiologist if he used "octreotide" during surgery and he said, yes, we will.  I felt much better about things after being assured of that.  I had 3 IV's one in each wrist, one in my elbow and then they put a jugular line in during surgery.

I'll post more details tomorrow.  Just wanted to give a quick update.

Bags are packed...

My bag is packed and I'm ready to go!  NOT....

Almost though.  I do have my list written out on what I want to take with me.  That's a start, right?  I never pack until the night before anyway.

My surgery is scheduled for 8 a.m.  I have to be there at 6 a.m.!   At least there wont be any traffic. We were supposed to get a big snowstorm but now its only going to be a couple of inches so whew... 

I really hope I'm doing the right thing.  I guess I'll find out! 

I am taking my Kindle Fire with me to the hospital and hopefully will be able to give a quick update after my surgery.  I am planning on it.

Wish me well, send a prayer or positive thought (whatever you believe in) my way.  It is all appreciated!

Cheers...

Insurance approval and random thoughts...

I called my Nurse Case Manager at my insurance company to see if they had approved my surgery.  I had a nightmare that I checked-in and they told me my insurance hadn't approved it so they wouldn't do it!  Well, she said it was all "approved".

I now have to figure out how to come up with my deductible and co-pay for the year!  $3,000 total.  Barf.    I'm still paying off last years (which was in July).  I still don't understand why we had "open enrollment" in June to pick a new plan and then our plan year is Jan-Dec.  I will have paid a total of $7,000 since June of 2012.  I had switched insurance companies in July so my June colonoscopy and CT Scan went to my old insurance company deductible and out-of-pocket and then my surgery, which was July 2nd, went to my new insurance company deductible and out-of-pocket.  I know a lot of people have much higher deductibles and co-pays so I try not to complain.  I'm worried the hospital is going to want $1,000 up front before my surgery.  I know they will ask but I won't have to give it to them.  I was told to ask for a discount anyway.  I have CANCER and they are a CANCER Hospital so they can offer discounts, right?  That's why we donate to cancer associations and hospitals (I have).

I have added a DONATE button on my blog but I feel so weird asking people for money.  If you feel like donating to my medical expenses, please use this button.  I will only use any money donated to pay for said medical expenses.   I've really been thinking about re-homing my horse, Abbie.  I don't want to.  Riding is like my therapy and I've now owned a horse for 25 years! 1/2 of my life.  It would put a huge hole in my heart to not have her in it but I feel that perhaps it would be the best thing to do.  I had two horses until my diagnosis last year.  It has cost me so much, this cancer of mine.  I sold my "Cocoa" to a jumper trainer who had her "leased" to a 13 year old girl who has since bought her.  I know she has a great owner who loves her very much and that is the only reason I don't feel too bad about having to sell her.  I sold her for pennies, really.  The same amount that we paid for her as a yearling! She was 9 when I sold her.

 I do get alimony for another year.  It is only enough to pay for my car and auto insurance.  I do not know what I'll do when it runs out as my car will not be paid for until 2016.  Unfortunately, I got rear-ended two weeks after I bought it so the value has gone way down for resale (even though his insurance paid to have it fixed, it means the car has been "damaged").

Anyway, surgery is on the schedule for the 21st.  I have to call the day before between 2 and 5pm to find out what time I have to be there.  I hope its not really early nor late in the day.  I hate waiting.

Send me some good vibes, energy, prayers--whatever you believe in.  I am feeling positive about this and am confident everything will go well.

Cheers!

I have a date!

With a surgeon, not a guy!   I knew this was going to happen fast.  I just knew it.  I'm sure I could have balked and asked for a later date but now I just want to get it over with and the longer I wait, the more nervous I'll be.  February 21st.  Yes, 13 days away.  Almost two weeks.

I've been reading about what to expect from liver resection surgery.  I also should have requested a visit with the surgeon beforehand so I could ask him all my zillion questions.  I was just so "shocked" with how quickly he wanted to do it.  I mean, I told her I was in no hurry but didn't know how long the surgeon would want to put it off.  He doesn't want to.  So I am going... under... the....knife!

I did ask about making sure they use the octreotide protocol in case of carcinoid crises.  She said they would.  I asked if he used staples or sutures.  Staples (rats).  I forgot to ask about drains and such but from what I've read, I will have at least one drain for my liver.  Not sure about a gastric-nasal tube.  Guess I will find out when I get there!  Also, a nurse should call me beforehand to go over pre-surgery instructions so I can ask her/him.

Positive energy, prayers, whatever you believe in, please send my way!  I will post more later...  I will also try to keep a journal of my recovery so it can help others to know what to expect.  Oh, I've also been told to gain some weight. That won't be a hardship (or be hard)!

Surgery is likely

My appointment yesterday went very well.  I really like my Oncologist.  He was very impressed with Dr. Kim, the liver surgeon.  After much discussion and weighing the pros and cons I am going to go ahead with the surgery (pending approval from my insurance company of course).  My oncologist even said that if it were him, he would do it.  He also said there is no big rush.  I don't have to have it next week but should probably not wait too long.  I'm thinking mid to late March at the earliest.  I could wait but I don't want to because I know I will just get more and more anxious about it.  He said it is a HUGE surgery and will take me probably 3 months to get feeling more "normal".  He said it only takes about 2-3 weeks for the liver to regenerate but your body just sucks all your energy and calories to fueling that process and the "affects" can last for up to 3 months.  He said since I am young (fairly) and healthy (other than having CANCER), I should not have any complications but of course, there are no guarantees!

I found this picture of a liver.  I will be having my right lobe removed, which is where my biggest tumors are.

It's a little daunting to look at how big the right lobe is compared with the left.  I'm a little nervous and of course, hope I am making the right decision.  Also, this is not a cure. It is a way to hopefully get 5 to 10 more years added on to my life.