1

(82 replies, posted in General Discussion)

Just an update, I feel terrible that I have not posted more.  I know some of you read my blog, it seems I have a hard time writing everything out in 2 places. 

I'm doing great.  I just want you to know this was the roughest thing I have ever done.  Now I have to say I have been very healthy my whole life and this was the first surgery I ever had.  What a way to start, I didn't know what to expect, how long it was going to take, I just kept getting encouragement. sometimes I wish people would have said get ready for the battle of your life.

This is so hard, because besides recovery from the shock of the surgery, you are fighting the regrowth of your liver.  One week I would be not to bad, the next week I would be terrible.  At the end of April, after the 3rd and final stent was put in, all was not too bad, when my colon flared up big time.  I'm not going to describe it here, but it was awful and took me 24 hours to get it back under control.  Of course, I didn't want to eat anything because of the pain I was afraid it would cause down below. 

On Weds., May 3rd, I was at my lowest and my wife called the Oncologist, I considered myself still under the care of the surgeon, but very hard to get a hold of.  The Onc. gave me a prescription for an appetite stimulant.  Either that alone or working in conjunction with the whole body healing, it was like somebody flipped a light switch and " said it is now time for you to recover.

By Sunday I was much better, could attend my grand son's birthday party without just sitting at the kitchen table with my head in my hands.  Since then I have been on a eating binge, and I'm now completing my 4th week of work back at UPS.  I have been spreading mulch, mowing the yard, doing about whatever I want.  I've not gotten out the ladder and been on the roof yet.

I'm totally blessed and can't believe it's been about 1 year exactly since I found this cancer and started chemo on July 22nd.  It's like I was in somebody else s body. 

I did have my 3 month CT scan and both the surgeon and Onc. said they see no sign of cancer at this time.

I pray for all of you each day, and hope for miracles in your lives.

Note to Pam, thanks for your note on the blog, special thoughts and prayers coming for Lauren.

Thanks so much for the caring posts and prayers for me, not that I still don't need them, but I just can't explain it.

Grover

2

(82 replies, posted in General Discussion)

I don't even want to think how long it's been since I posted.  If any have following along on my blog you know what's been going on.  For me this has been rougher this I ever envisioned.  The Dr capped off my T tube for external bile drainage on Weds, 3/21, on Thurs. I awoke to no appetite and no energy, I walked from my bed to the recliner and back to bed again all day Thurs. and Friday.  Friday evening I was having the shakes and 101.5 temp.  We started calling the hospital on Friday evening, the next 24 hours were not too well remembered.  I was admitted to hospital on Sunday for all kinds of blood cultures, urine tests, etc.  looking for an infection. Because the bile was backing up I had the start of a bile infection, go figure.

My surgeon was on vacation.  Remember, the constriction in the bile duct, they called and wanted do a ERCP, scheduled it for Thursday 4/5, normally takes about 1/2 hour, they tried for 1 1/2 hours and the constriction was too tight.  They couldn't break through.  They admitted back into the hospital for another try on Friday through Interventional Radiology.  They were going come in thru the side from up and above the constriction.  It worked.

They kept me another night probably for observation since they had so invaded my tender little body????  They placed what they called a 10 stent in the constricted area, and told me to cap off the exterior bag on Tuesday.  Well, that scared the heck out of me mentally, cause every time I had capped that bag I was back in the hospital.  The next Sat. was Sue's bowling fundraiser and I sure wanted to be there for that, on April 12th was my Dad's 90th birthday, I wanted to be there for that.  Well, I prayed and hoped and it all worked out.

On Friday 4/13 the 10 stent and tube were pulled and a 16 were installed.  This Friday 4/20 they will make the final replacement from a 16 to a 20.  As I understand it, this will be a final.  it stays in there for a year, the tube also remains, and we have to flush it once a day.

I'm definitely getting my appetite back, bile is all flowing inside and then out of my body.  Energy is getting there.

I was able to attend the 90th birthday party for Dad.  And although this year I did not even pick up a bowling ball, I was there in support, and saw some of UPS friends that I hadn't seen in 6 weeks.  I feel that there is a end in sight.

I wanted to give you an update.  I just had to hide under a big rock and let things happen, I have been able to peek out and the view is getting better.

Grover

3

(82 replies, posted in General Discussion)

A short update.  Late Thurs. evening my wife said " Why are your eyes turning yellow? "  Now that was something I wanted to hear after being through this whole thing without ever a hint of jaundice.  Last Friday we were able to see the surgeon, have some blood work done, and a CT x-ray of the liver.

It showed a constriction or kink in my internal bile duct which was working but still allowing bile to back up.  I still had this external drainage tube extending from my body so they hooked up drainage bag to it.  And immediately we started collecting bile outside of the body.  We have kept track of it by cc's and have a follow-up appt tomorrow at 9:30 AM with the surgeon.

I think I will be keeping the bag on as it has not slowed up the collection process.  If it would slow down outside the body I would think it would be working better on the inside.  So that will be a ? to ask tomorrow.  What are the future options.

I'm otherwise feeling pretty good, hate to have this bump in the road, but what are you going to do?

Thanks for the thoughts and prayers.  Grover

4

(82 replies, posted in General Discussion)

On the lump scare the other day.  I'm thinking Lainy was the closest to an answer.  I think I told you I took 2 pics with a digital camera and emailed them to him for viewing. 

He said " I wouldn’t be too  concerned. The bulge represents the area where the muscles were pulled together. This should smooth in 4-6 weeks. "

Very common sense thoughts, but no one told me to be aware of that possibility.  I've been watching for temperature, general pain, appetite etc. not lumps.  Just surprised me when I saw it.

Thanks for all your prayers, I'm doing fine, last couple of days of been filled with naps.  Now I'm writing at 5 AM, go figure.

Prayers to all, Grover

Congratulations Pam and Lauren.  Sometimes our timetable and God's are not the same.  I'm really glad you have some hope out there to shoot for.

God Bless you both and prayers coming your way.


Grover

Good news, tiff, happy for you and wish's for continued improvements in your conditions.

Grover

7

(82 replies, posted in General Discussion)

I think I'm ok.  " No news is good news " as they say.  A surgical nurse from the hospital called back and talked with my wife and nobody thought it was an emergency that I needed run to the hospital.

I had my wife take a couple of digital pictures of the problem and emailed to my surgeon, Dr. House, of course he was in surgery but I'm taking it as no calls from them is good news.  The surgeon thought the idea of pics were kind of funny, what the heck, we have technology - let's use it.  Hope the authorities don't come after me for "sexting"

I'm not running any fever, bowels are working fine, feeling fine, just noticed this situation yesterday.  It could be compounded by the fact that I have lost 15 pounds since the morning of surgery, maybe it is just more pronounced with the weight loss.

So I'm going to try and relax and not fly off the handle, all is good.  I've taken the stairs to the second floor twice now, am outside walking in this great weather.

Thanks for the thoughts and continued prayers, and the same back to all of you.

Grover

8

(82 replies, posted in General Discussion)

??? if someone has an answer.  I'm doing fine, but just now I got ready to take a shower and my wife noticed a lump on my right side just above the drainage tube.  It feels hard under the skin, like the liver is growing towards the side instead of toward the center of my body and under the liver.  I have 2 phone calls into the doctor and the call service, and have sent him a couple of photos to look at. 

Just waiting on some kind of call back.   No pain, just a hard fold of something new under the skin, trying to figure if it serious or just normal.

Thanks for all your support thru this process.

Grover

I think the answer is no.  I just had a resection, left the hospital yesterday and have 1  T-capped tube coming out of my side.  They told me no swimming, no bathing, I can shower and letting the water run over that side of the body is fine.  Afterwards we use a saline cleaning agent to wipe around the tube wound.  Then we cover it with gauze pads that they gave us.  I don't think you want unclean lake water getting anywhere around that hole in your body, even swimming pool chlorinated water.  Why take the chance?

This is my new invention, I'm willing to share with all friends here.  I was having trouble with the tape that holds the gauze pad to my body.  Just pulled the skin, leaving red marks, could never get it too tight or too loose.  When you bend over or sit up it's always pulling at your skin.

I had my wife go get 1 of those elastic wraps that you would wrap a sprained ankle with, it's 48 inches long.  And just wrapped the pad around my waist to hold it in place.  Pretty simple, it seems to work fine, my seepage from the wound is down to next to nothing, so all is working good, and I'm feeling lots better not having to pull that tape off every time to change the gauze pad.



Grover cool

10

(82 replies, posted in General Discussion)

Although I thought I was back, now I'm really back.  The tubes are all disconnected from my body, the laptop is running, and I even figured out why the mouse wasn't working ( battery? give me a break ).. Even the smallest things that you are used to are important.

Taking some magnesium cause it is slightly low.  Have a ct test of some sort coming up today, they're looking to make sure the bile is flowing good thru the liver.  Expected release from hospital is tomorrow, 3/7/2012.  I'm walking around the halls, using the restroom for full functions, although I haven't taken a shower yet. 

After the test this morning, one more drainage tube will be removed.  That leaves one left.  The one left will be capped off and left in my body til my first follow up appt with the surgeon,  I guess this is for the skin to heal and scab up before removing the final one.   

There is not a doubt that I can't function at home, getting out of bed just fine, walking around the house, not a problem, Will have to watch doing to much too soon.  Just like getting back to full meals.  Last night I ordered a turkey Manhattan and I had about 5 bites and just felt like it was getting to be too much. So quit.  3 bites of a cupcake and I quit, seemed to be awful rich. I think it is just common sense, I certainly don't want to be puking my guts out.

More to come, but thanks for all the prayers and support, it's good to be back.

Grover cool

11

(82 replies, posted in General Discussion)

I'm back.  But for typing not so long.  Having a hard time fucosing on finger tip typing as opposed to brain function.  Regaining strength everyday

Will try to return later,, Captain

12

(17 replies, posted in Introductions!)

Thinking of you with prayers and positive thoughts.

Grover

13

(11 replies, posted in General Discussion)

Be safe driving the trip, good luck with the chemo.

Tell Lauren I said to " fight like a girl" and kick it's butt.

Prayers are coming your way.

Grover

14

(23 replies, posted in General Discussion)

I'm "Feeling the Luv" and the prayers.

I just saw the pathologist at our small town hospital who has been interested and following my progress since he created the biopsy report last June that said I had cancer.  Very interesting connection and comments.  It started out that he couldn't believe what he read, and in talking to my family doctor who told him I was a very healthy patient and he couldn't believe it either.  The Path. has stayed in contact with the Dr. to follow the progress, there has been some strange contacts that he has had with close friends at key points in this journey as it changed direction.   He stated this am, that just last night he was mentioning my name and case to a friend, and within 24 hours we are talking with each other???????   Weird, Unusual, Spooky, or God's presence

Maybe I am some kind of "miracle walking".  I owe all the glory to God, as medicine alone can't explain it. 

My daughter who is also on this board "shardy" will be giving some updates here in the next couple of days.

Thanks again, see you on the other side "of surgery only"

Grover

15

(23 replies, posted in General Discussion)

Thursday at 7:30 AM EST I will be in surgery for a resection.  Would appreciate any prayers and positive thoughts that can be sent my way.  Never having had surgery of any type, I'm a little apprehensive.  See my blog today for my surgery humor, it's G rated don't be afraid.

http://captjr.blogspot.com/

Kris, what's up with your news on a resection on April 4th.  Why are you not shouting it out.  I thought I saw it, and couldn't find it, finally did buried in some other thread.

Congratulations, will be thinking of you and praying for success.  The wait is hard as I knew on Feb. 3rd and it is finally here, just want to get it over and on the road to recovery.

We all should start of photo page somewhere to compare scars............hahahaha

Thinking of you all, thanks for the support and luv felt on this board.

Grover cool

Congratulations Tiff, great news.  Praying for you and the family for continued success in this battle.

Grover

17

(18 replies, posted in General Discussion)

Congratulations Kris on a good report.   And glad you got to dinner with your friend.  It seems that my wife and I visit a new restaurant in Indy after chemo.  Like a minor celebration each time.  Trying to figure out how to submit the meal bill to the insurance co.    lol  lol  lol

Keep moving forward with your battle, it's really good that you are seeing shrinkage without any treatments being made.  Are you using the liver pump at all?  Just wondering.

Prayers to you and all others,  Grover

I just sent this link to both my Oncologist and Surgeon, especially because I have a resection scheduled for March 1.  Maybe I can be a contributor, who knows, I can help others in the future.

Thanks for the info Marions.

Praying for us all,  Grover

19

(4 replies, posted in General Discussion)

I don't really have heartburn but sometimes get a multiple burping, belching thing going on.  It just pops up at different times, can't pin it down to right after eating, or whatever.  During all the tests, one Dr. said I have a rather large hiatal hernia that could be causing the problem.  I take Prilosec and my Onc. says there is no problem taking it longer than 14 days at a time.

Does it help?  Let's say it's not as bad as without the pills, it still occurs, but not constantly.  Hope that helps or maybe it brings up another problem.

Grover

20

(18 replies, posted in General Discussion)

Good Luck Kris, praying for good results and a plan that will take you to the next step.  Keep us informed.

Grover

Tiff, did you find some green tea, are you happy?  Obviously nothing is going to happen overnight.  Just following up.

mb you are on your way to md anderson.

Grover

Congrats on the good news, like the others, keep us posted on how things work out.

Grover

Tiff, sorry for the delay.

I have never received any CA 19 whatever counts, no billirubin numbers. 

I'll play the Hollywood producer here.  " I don't care what the numbers are, or other problems, just make it happen.  That's I why I pay you the big bucks. "   lol

I just don't know, until I was on this board for awhile, I hadn't know anything about CA-19 and never remembered to ask.

Let's all get well, Grover

24

(16 replies, posted in Members' Cafe)

I hope you 2 can meet up, it is great to meet another CC member.  I know meeting Cindy and even taking chemo together has made the road easier.

Grover

I found this article and pictures that may explain in more detail about the liver and why resection works they way it does.  Pic 1 shows how the branches are laid out inside the liver, and how hard it sometimes is to find the actual locations of small cancers.  I mean which branch is the cancer in, unless it is large enough to become a tumor.

http://pedicardiology-bala.blogspot.com … veins.html

The second picture shows the sections of the liver,  On my resection, everything is being removed except sections 6 & 7.  Because of the size of my tumor, the left lobe is pretty much dead, and shriveled up.  He said only about 10% is working.  So 1/2 half of my original liver is going.  Then other satellite tumors in the right lobe were located in sections 5 & 8 so as a precaution they are removing those also.  So I will left with 1/2 of the functioning liver as it now stands.  They could already see on the CT scan that the right lobe was already starting to grow ( regenerate ) in to the left lobe area because it had become smaller.

The article explains haw the arteries and veins are connected to each liver section and how when a section is removed it does not effect any other sections.  Isn't that cool.

I'm a visual person and this really helped me a lot.  I've been on my Onc. to get a plastic liver with a hinge that he could open up and show me what he's talking about.  He walks over to the whiteboard and draws a liver ( looks like something you're 7 year old would draw ) and then marks it up. 

On Friday I printed out 2 pics like I linked to, took them with me,  and scotch taped them to his board telling him to have them laminated so he could use them and draw on them for other patients.  Of course, he laughed.  I'm just taking over, in my own way.  He doesn't know it yet.........lol

Now I could be completely wrong about everything I just typed, but that is how I understand it at this time.  Do your own research.

Hope this helps others.  Grover