Hey, if you have to have a pancreatic tumor, why not have fun with it?

So in December 2003 I woke up early one December morning with some really nasty pain. I had no idea what was going on. I just knew it hurt.

Well turned out I had kidney stones. Word to the wise. Don't get kidney stones. They totally suck. A few days later I had another attack and they sent me to get a CT scan.

When I went in for the results I found out that the stone was pretty small (it didn't FEEL small). BUT, there was something else.

<insert sound of heart thudding to the floor>

I had a "spot on my pancreas" that "bore further investigation."

Back to the CT Scan Machine. I tried not to worry. Okay, I worried a little, but overall I was okay with it.

Well, turns out I had a pancreatic tumor of who knows what origin or description, except that it appears to be non-cancerous.

Off to the surgeon. I thought "Oh, they'll probably just suck it right out. I'll be in I'll be out, a few days watching Jerry Springer and I'll be back at work."

Nope, it was going to be a little more complicated than that. It was in a good spot...not where the insulin is produced. It seemed like he'd be able to go in, rummage around and rearrange my digestive furniture, scoop it out, and I'd be golden. I would be off work for about three weeks or so, and in pain for a bit longer, but the prognosis was good.

So January 21 they wheeled me off to the operating theater for my headlining show! I was looking forward to just getting it over with so I could get on with my life.

I woke up about five hours later with my husband holding my hand looking visibly upset and very worried. I asked him how it went and he said "They couldn't get the tumor. You have to have another surgery."

Oh my good holy crap! OOH I was so frustrated! OH! MAN! I wanted to cry, but it hurt too much. I just went back to sleep, depressed as hell that the stupid tumor was still in there. The plan was they'd ship me off to a specialist in Seattle within 24 hours and he'd do a Whipple Procedure.

Well both specialists prophesied, "Nope, you've angered the pancreas by opening it up and peeking at it. We can't operate now. It will rebel and the skies will rain blood, there'll be frogs, locusts...you know. All that plague stuff. So we have to wait until the pancreas is healed and happy again."

Bummer. I think I would rather have just had it over with. But we can't have it raining blood on my account. That would be uncouth.

So here's what was scheduled to happen. Whipple-Fest 2003 during my Spring Break. (Hey, do I know how to party, or what?)

 

Spring Break 2003!!!!!!!!!!

Woooooooooooooo!

Call MTV!!

Digestive Organs Gone Wild,

just $19.95 plus shipping and handling!

Included free to the first 100 callers;

Toe Jam 2002

and Highlights from

Bunions Busting Out!

Don't wait! Call now!

1-800-WHIPPLE

 

So what is Whipple Fest?

Whipple-fest looks like that picture over there to the left. It is a procedure used when there is some form of cancer or tumor in the head of the pancreas. The head is where digestive enzymes are created. In order to remove a tumor in the head of the pancreas they have to remove the head (since this could not be "enucleated" or "scooped out") of the pancreas which also requires removal of the duodenum, the gallbladder, and the end of the common bile duct. In some patients it requires removal of part of the stomach as well. Ironic that I never wanted weight loss surgery, huh? In my case, because I'm so very young and youthful-like, they did a pyloris sparing procecure, which just means they cut under the stomach leaving the pylorus (the opening from the stomach to the intestine). Dr. Hart explained that it gave me a better prognosis for a healthy digestive system. After all that stuff is chucked out they sew me back together so that the end of the bile duct and what's left of the pancreas are attached to the small bowel in order to make sure bile and digestive enzymes flow into the intestine.

Here is another picture showing, in essence, what they will do during Whipple-Fest 2003. The Whipple, named for the first doctor to perform it Dr. Allen Oldfather Whipple, is also known as a pancreaticoduodenectomy (pan·cre·at·o·du·o·de·nec·to·my)

 

Now there's a word for the spelling bee! Figure 1 shows the cuts that are made and Figure 2 shows how it all goes back together. Really cool, huh?

 

So the idea was, If there was no cancer, (and some lymph glands they took during the first operation were just as squeaky clean as can be), that should be that. I'd hang out in the hospital flirting with the male nurses and eating that smash bang hospital food for a few weeks...head home and watch lots of wholesome, entertaining daytime TV for about three more weeks, and then I would be golden.

If there was cancer...well, then Whipple Fest becomes Cancer Fest and I guess we'd play that venue when we got there. Blessedly there was no cancer. It was a pre-cancerous tumor. Praise the Lord! But it wasn't as easy as all that. Read below for updates.

Here are some pictures of my, yes MY pancreas.

Bird's eye view! You can see the tumor (see below). The little black dot right below the black spots is the common bile duct. Isn't it cool? Okay, maybe I'm gross but I find this completely fascinating.

Please note the flat abs. That's what 200 crunches a day will get you! One HOT looking CT scan! (What the heck is up with my skin, though? I look like the Elephant Chick! Really I am not that flabby!

Another shot (below) of my tumor a few millimeters down.

This is what my pancreas would look like if I were a rat in science class. (Thanks to Nathan W. for pointing out that frogs do not have long skinny tails. The website SAID frog! Honestly!)

This is a tumor pretending to be a cyst. I hope my tumor isn't as deceptive!

This is what my pancreas would look like if I were a naked guy with washboard abs.

Update on the Whipplefest 2003

Well it's over and it was the worst month of my life. At least I hope it is over. My sense of humor is gone. My butt is gone. My boobs are gone. Blessedly Hank is gone.

Here is a short recap of the month:

April 1 I went in for the procedure at 6:00 a.m. The procedure was done by Dr. Michael Hart at Swedish Medical Center in Seattle. Dr. Hart is an awesome Doctor and he did an incredible job. He has been fantastic through all of this. I am deeply indebted to him.

I came out of it with a nurse standing over me saying "Benign! It was benign! Isn't that good news?"

I didn't know if it was good news or not. I just knew I hurt.

The next 8 days were uneventful. I owied. I walked. I started on a limited clear liquid diet and then onto a full liquid diet. On day nine I was doing so well they let me go home.

Day ten went well until the evening when I had horrible stomach pains and intense reflux. Called the doctor who assured us it was normal. (NORMAL??) It wasn't Dr. Hart, but his partner Dr. Horton. I felt like he ignored my elevated temperature and my complaints. I'm sure they hear a lot of complaining, but they need to understand that each one is a different patient complaining and I am NOT a complainer so if I call there is something wrong. After throwing up a LOT of bile I felt much better.

The next day went fine. The following day was horrible and I ended up in the emergency room where the Einstein's in charge decided I had the flu. The flu. Yeah, that makes sense. I'm sure it had NOTHING to do with the fact that I'd just had digestive system surgery. Actually the emergency room nurse and I had the right idea. We both insisted it was a partial blockage, but what do we know?

The next morning (after going home and spending a sleepless night in intense pain, throwing up) I called the doctor back and said "I'm coming in, admit me." He said he would, although he didn't so that meant waiting at admissions in pain. (Again, not Dr. Hart.) Turned out I was right, my digestive system was not allowing my stomach to drain.

They did a CT scan and discovered my stomach was three times it's normal size and had fallen over onto the intestine. He felt that the place where the intestine was reattached was swelling and would be fine given a week of rest. They put aNG Strip Nasal Tube Fastener nasogastric tube in my nose down to my stomach (honestly the most painful thing I endured) and I spent five days feeling better each day while everything was sucked out of my stomach through my nose as shown in the picture on the right. No, that is not me.

Very attractive.

Oh, but was even MORE attractive was the green icky stuff they took out of my stomach. Have I ever mentioned that my wonderful husband has the skwikiest stomach in the world?? He can't even watch Nip/Tuck with me lest he be ill. Poor guy.

After five days they checked to see if the intestine had opened. It hadn't. So Dr. Florence, another partner of Dr. Hart's, decided it was time for another surgery. He asked me if I wanted to wait for Dr. Hart, but I said go ahead and do it. I wanted to go home. On April 18 I had surgery two.

It turned out that the problem was not swelling, but that my intestine was situated that it took more pressure than my stomach could muster to push food through, so only a very small amount was getting through. Not enough to live on. Dr. Florence rerouted the intestine and closed me up ensuring us all that this would do the trick.

Having two surgeries in three weeks through the same incision is painful, but I recovered quickly and was able to eat. Six days after surgery they did an upper GI study to make sure things were progressing and they were. On day seven he sent me home with a gastrostomy bag in case my stomach overfilled. That allows me to drain the stomach (instead of throwing up, which is very traumatic to the newly sutured organs) through a tube in my side, if needed. I could also be fed through this tube using something such as Ensure if I couldn't put on enough weight by eating. At this point I weigh about 110 pounds. I'd lost 16 pounds since April 1. But, I had gained since my lowest point in the hospital; 96 pounds. (Yoiks!)

As you can imagine, things were hot hot hot as soon as we got home! Okay, not not not. Nothing more attractive than a skinny yellow chick with tubes hanging out of her belly. Have you seen the movie "Kingpin" where they show that old lady...well, let's not go there.

The next day at home I was feeling very feverish and sweaty. I used the restroom and got up, feeling faint. I reached to my side because it felt like sweat was drenching my PJs. It wasn't sweat, it was blood. Oh that scared me. The hole where my biliary tube was bleeding profusely. We called the doctor who assured us it was normal to have a little bleeding. Well it didn't look normal so we ended up calling 911 and I was taken to the emergency room where they stopped the bleeding and did another CT scan to ensure there was no internal bleeding. The blood soaked 6 layers of dressing. This was not a little bleeding.

(Should I input the story about my mom coming with us and yelling at my Dad over the cell phone, which caused me to beg the medic to please just push her out of the ambulance, but he wouldn't. And should I add that when we got home from the hospital Roy drove her to where she was to pick up her shuttle to the airport and she locked the keys in the car while he was carrying her bags and he had to walk home at 3 a.m. to get a second pair of keys. And should I add that in the meantime I was laying in the chair afraid that if I closed my eyes I might not wake up, wondering where the heck everyone was, and wishing Roy would get home? No, I shouldn't add that because that wouldn't be nice.)

I went home and felt better over the next few days, although I was extremely weak. In the hospital my hematocrit was 25, but because it was up from 23 the day before the doctor decided against a transfusion. A normal hematocrit is 39-46% for adult women. (Hematocrit is the percentage of red blood cells in your blood. Red blood cells carry oxygen to the organs so a low crit leaves you feeling week and fainty.)

Unfortunately Monday at about 3 a.m. I woke up feeling feverish and sweaty again. My hand went to my right side and, once again, I was laying in blood. We were going to try to just stop the bleeding (since they'd made such a non-issue of it at the hospital), but it wouldn't stop. I sat up so Roy could take me to the hospital and bam...passed out. Call 911. It was nice to get the same paramedics. They were very kind. A scary moment came when they couldn't register a blood pressure, but at least I knew I was in good hands.

This time my crit had dropped again because the bleeding wasn't only external, it was internal as well. They gave me two units of blood and sent me home 8 hours later. Even with the blood I was very weak and was getting extremely paranoid. Every time I'd fall asleep I'd jerk awake trying to decide if I was so sleepy because I was bleeding again or because I just hadn't had enough sleep. Later in the day I found blood in my stool. The doctor said it was probably from the bleed the night before. A few hours later I had a great deal of blood and was so scared that I called Dr. Hart again and he said "Come back, we'll admit you."

Back to the hospital. It was such a relief. The bleeding really frightened me.

That night the set up checking my crit every six hours. The next day I went into interventional radiology to see if the tube was ready to come out, hoping that would take care of the bleeding. It was ready, so Dr. Brown in IR took the tube out. It hemorrhaged and my BP dropped to 76/36. I was really frightened, but they took good care of me giving me saline and monitoring me constantly for 30 minutes. When I was stable I went back to my room and was monitored for the next four hours very closely.

I was all set to go home the next day, although I was honestly nervous about it. Dr. Hart wanted them to give me another transfusion before I left. Unfortunately they didn't get the blood to me until 9 p.m. The transfusion took until 4 a.m. so I didn't go home until Thursday. At that point my hematocrit was up to 39. I felt like a new woman!

I am now out of the hospital (as of this writing) for two full days and am feeling a LOT better. I have to watch for internal bleeding for the next ten days. The problem was the tube was piercing an artery. This is not abnormal as the liver is a very vascular organ. When I heard two weeks until I was out of the woods I was very depressed, but now I'm feeling much more confident that I won't bleed. Dr. Hart said it was unlikely and I'll see him Monday to check my hematocrit.

I'm down to 106 pounds and it is NOT pretty. I still have the gastrostomy tube in and will until I put some weight on. You can see in this picture that I have no butt at all. The boobs are because of a very "firm" bra. I don't have those either. I do not look good. Look at those spindly arms! Fortunately I have a very good appetite and am eating six small meals a day trying to gain it back.

I pray that the rest of the story will go something like this, "and then she got stronger and stronger every day and resumed her normal life." At this point I won't be back to work until June and I really miss my kids and do NOT want to miss graduation. I also have a trip to Disneyland in June so I hope my stamina is back. Today the worst issues I'm dealing with are lack of stamina and my pressure sore, which is on my coccyx making it difficult to sit for long periods of time.

The positive outcome of this is that the tumor was benign. The doctor said it wasn't even pre-cancerous, however if it had been left in it probably would have eventually become cancer. It was hard to see the big picture during some of my repeat trips to the hospital. But the big picture is, as difficult as this last month has been it is nothing compared to dealing with pancreatic cancer.

Update May 16, 2003

I'm healing! I'm healing! I'm feeling SO much better. I'm able to do stuff like cooking, cleaning, going to lunch, the store, etc. (Not that I actually DID clean or cook. I mean come on. Let's be real, here.) I tire easily, but every single day I have a little more stamina.

I've been back to the gym! I'm exercising a little bit every day. I'm limited to the treadmill, but that's okay. It's better than nothing. I get my gastrostomy tube out on Monday the 19th and at that point I honestly feel like I'm moving forward. The only negative thing that has happened is my poor little butt ring died from a broken heart (or overuse...one of those). He has been laid to rest and another butt ring has taken his place, but it was a grave loss.

Update June 15, 2003

Woo! I'm feeling like a million bucks! I hardly have any pain any more and am working out as much as I was before surgery. I'm working my way back up to the same weight ranges and have added stairmaster (in an attempt to regain my butt). I am so thankful to be alive...seriously. I know that sounds totally cornball, but honestly I feel like a new woman!

Thanks to everyone who prayed for me, brought me meals, sent me emails and cards. It was awesome to know that people were out there thinking about me while I was feeling like crap.

Update September 6, 2003

I'm perfectly back to normal now. I have to go back in for a CT scan in the spring to make sure nothing has returned. That scared me a little when Dr. Hart said that, but I'm sure it will be fine. He assures me it won't grow back...they just have to make sure.

I've gained back up to about 112-115 depending on the week. Totally feeling awesome. The stairmaster didn't work, though. I still have noasitol.

Update October 24, 2004

I had a CT scan in March and it showed no sign of Hank or any Hankettes or Hank Juniors. That is a very good thing. The doctor said there is no reason to believe I'll ever have another issue with Hank or his lot again. Good riddance to bad rubbish, I say! Less is more I say! Hickory dickory doc...oh wait, that doesn't really apply here, does it?

Unfortunately in August (and maybe before) I started having attacks of pancreatitis. I am sure it's nothing to worry about, but I'm watching it closely because I do not want to anger the pancreas again!

 

Page last updated October 24, 2004