My Whipple Journey

I’m almost positive that your very first question when reading this title was “What the heck is a Whipple?”

Every time I talk about my surgery, people get confused. What a funny name for a far from funny procedure.

But before I explain what it is… let me back up a little bit and tell you how I got there in the first place.

How they found my cancer

In the fall of 2016, about 6 months after I got married, I was laying in bed feeling not so hot when I felt stabbing pain in my lower left abdomen. I couldn’t remember which side was the appendix, but the pain was so excruciating I was certain that it had to be my appendix. I knew that was nothing to mess around with, so I asked my hubby to take my to the ER.

After some IV’s, monitoring, a pregnancy test and a CT scan they told me that there was nothing wrong that they could see in my lower abdomen, but they could assume from my symptoms that it was probably an ovarian cyst that had burst and was very common and not problematic.

However…. what was problematic was a mass on my pancreas. That was NOT normal.

So, because pancreatic cancer is nothing to mess around with, to a specialist I went. We talked about what could be seen from the CT scans and he said he wanted to do one more scan before moving further with treatment options.

Deciding what to do about it

The day before the CT scan I was feeling kind of funny and decided to take a pregnancy test just in case, because I didn’t want to waste my time driving the hour to the hospital to get my scan if I was just going to be unable to get it because of a positive test there.

And surely enough, there was a big old plus sign… I was pregnant.

The specialist said we would wait until the 2nd trimester to get an MRI and see what had happened with the mass. Waiting until that MRI was excruciating, because we had no idea what was in my body… was it cancer? Was it benign? Was this baby going to be okay? Was I going to be okay?

After getting the MRI, I met with my specialist and he gave me great news. Nothing had grown in the 4 months since my initial CT scan. He said because of that, he knew for certain that it was not pancreatic cancer! This was a huge sigh of relief for all of us.

What wasn’t great news is that he still didn’t know what it was and he wouldn’t know until he could take it out. But he didn’t want me to worry about that. He instructed me to focus on my baby. He said he would see me at 3 months postpartum after I had time to adjust to parenthood and heal from childbirth.

Preparing for surgery

All through my pregnancy and postpartum stage, I knew I would be getting surgery. But I really didn’t know how extreme that surgery was going to be. After having a crazy, traumatic childbirth experience I didn’t think that anything else could be quite that bad. I was pretty confident that I was going to be just fine.

3 months after my son was born, I went into see my specialist again…. this time with a baby in tow. I was 200 pounds, struggling to breastfeed, trying to figure out how to be a mother and honestly not overly concerned with the mass on my pancreas.

I got another CT scan and he said the mass hadn’t grown at all since the previous spring. However, he still wanted to take it out. I didn’t really understand the purpose of any of this. I didn’t have any clue what was in there or why it was so important to take it out if it wasn’t pancreatic cancer. I just trusted the doctor and we set a date for surgery.

The weekend before I was set to have the procedure, I got mastitis. He wouldn’t do the surgery on me while I was fighting off infection so we moved it out two more weeks. And speaking of breastfeeding, everyone asked what I would do about that with my surgery coming up. I would always tell them it would be no big deal and I would definitely keep breastfeeding through it. Oh, how naive I was.

The day I got “whipped”

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We woke up bright and early, dropped my baby off with the babysitter, and headed to the hospital. I was a little bit excited to be honest. I didn’t really know what was going to happen, but I felt really confident that I was going to be okay… and if the doctor thought it needed to be out, I was really happy to get it over with and know that all was well in my body.

Registration took forever. Everyone who I had to come in contact with, whether for blood work, IV’s, info…. all of them looked at me like i was a poor lost puppy dog. I was getting lots of concern over how young I was and it was too bad I had to go through this. One lady told me she couldn’t believe how joyful I was. I was just confused about these comments thinking the whole time. “This isn’t a big deal…. why is everyone making such a big deal out of this?”

My last memory was sitting in pre-op with IV’s stuck all over my body. My pastor, husband and parents were surrounding me after praying and my mama put the cap on over my hair. I remember giggling, I have no idea what about…. and then it went black.

Next thing I knew, I woke up. Every part of my body in severe pain. Every breath brought excruciating stings. I felt like I was going to throw up. Never before had I felt such pain. I screamed as loud as I could. Everything was blurry. I yelled at every nurse that I saw “I can’t breathe! I can’t breathe! Help me! I can’t breathe!” 

Eventually I gave up. Nobody was listening to me and I couldn’t figure out why nobody was taking my pain seriously. Couldn’t they take it away if they just gave me something? I was so confused and angry. Why did nobody care that I hurt so badly? They were all ignoring me.

Surviving recovery

I went in and out of sleep for over a day. Every time I woke up I was met with the same unbearable pain. I kept pushing my button for the narcotics, but I swear to you that it wasn’t doing a darn thing.

Then came the catheters. Oh my gosh, those catheters. Every 6 hours without fail, they’d come in bearing tubes and I would yell and swear.… as if I wasn’t in enough pain already, they thought they had to empty my bladder. I never hated nurses so much in my life.

And then they made me walk. If there was anything I wasn’t prepared for, it was not being able to walk on my own. My feet couldn’t hold me. Two steps made me weak.

Because the surgery had cut out parts of my stomach and intestines, as well as my pancreas and gallbladder, I was not allowed to eat or drink anything. It was 6 days before I had my first sip of water and 9 days before I was able to eat anything.

But I was determined to continue with breastfeeding. Every 3 hours I’d get that breast pump out, despite not being able to hold it up. Out of the many nurses I had, only one was kind enough to hold them on my boobs for me while I slept… I wish I knew your name so I could thank you for that.

The worst part of all of that was that because I wasn’t drinking, I made no milk. Pumping for half an hour every 3 hours with absolutely no energy to hold them up and nothing to show for it… that was really, really hard.

Every time I woke up I was absolutely coated in sweat. I asked them to change my sheets multiple times a day. Sometimes I would wake up in such severe pain I thought I was dying and I would call the nurses. But they couldn’t do anything.

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Catheters every 6 hours. Blood work every 8 hours. Every breath felt like a knife was cutting through my lungs, but if I didn’t breathe deeply I would get pneumonia. Fabulous.

Physical therapy came to take me walking every afternoon. Who knew a stroll around the floor could feel like running a marathon. The worst part was walking past other patient’s rooms and watching them eat jello. My stomach was churning, not to mention my mouth felt like it was full of cotton balls.

On about day 5 of hell, the sweetest nurse in the world was on shift. She reminded me of one of my childhood best friends and that really helped. That day I accidentally ripped my NG tube out of the machine and my stomach contents flew all over the room. She laughed and cleaned it all up.

Then she took me to the shower and helped me get clean for the first time since my surgery… that couldn’t of been a pretty sight. I asked her if she would close the curtain so I could try to pee. She did. I peed for the first time in a week! Who knew how happy I would be to pee. It’s the little things.

Things started to get better from there. They finally pulled out my NG tube and let me drink some water. The worst part of getting ready for going home was the med student pulling out the G-tube like she was a sloth… that pain was worse than any I had felt so far.

But it was worth it because they sent me home. That was definitely the best day.

Home at last!

It seemed like I was in that hospital bed for years. I swear that I truly needed those narcotics for my back pain more than anything else. They really need to do something about those beds.

My dad stopped at McDonald’s and asked if I wanted anything. I got a child sized sprite. I took a few sips and felt like I had just eaten a Thanksgiving feast.

After a night on my own mattress, despite being in tremendous abdominal pain, I slept wonderfully and woke up feeling much better than the night before.

Recovery was rough. I was totally dependent on narcotics. I puked every time I tried to eat. Sometimes I would just chew on something for a minute and spit it out so I could enjoy the flavor.

The doctor warned me that I needed to get off the narcotics as soon as I could manage it. That was hard. I truly get why people get addicted to them. Thankfully, ibuprofen was helpful in the adjustment… but it was definitely a painful experience.

Every day was full of vomiting and diarrhea and a raw, sore feeling in my entire digestive system.

Loved ones came every day to take care of my baby and me. I’ve never been so thankful in my entire life to know so many wonderful, caring people. I’m forever grateful for the love that was shown to me during that time.

Still not eating + narcotics = no breastmilk. I fed my baby for two entire months on donations. I’m so grateful for women who were willing to donate their milk to feed my baby. It was such a huge blessing to us.

What was the mass on my pancreas?

Up until this point, I honestly didn’t know what was on my pancreas. While my specialist was a fabulous surgeon and truly caring, he wasn’t great at details. He gave me as little info as possible most of the time and kept our visits brief.

I also would like to blame my health for not knowing what was going on. I was bombarded with information while being in incredible pain and exhaustion, so it doesn’t surprise me that I didn’t always remember what my doctors told me.

While it’s taken 1.5 years to really get a grip on the whole story, I finally understand and here’s the run down.

I had a “solid psuedopapillary” or Frantz tumor on my pancreas. It was about 2 inches long. It is very rare, but usually occurs in young women in their 20’s. The oncologist explained that it is an extremely slow growing tumor and does not pose a risk to life (therefore not malignant), but it is also classified as cancerous because it DOES grow, just very slowly (therefore not benign). This makes it very difficult to explain to people.

But because it IS cancer and it it DOES grow, this means that it can morph and change into other things and could have spread or changed into other kinds of cancer throughout my lifetime. So, although it seemed quite dramatic to have such a life-altering procedure for a mass that wasn’t malignant, the oncologist explained that it really was in my best interest long-term.

As of right now, my risk for getting pancreatic cancer now is no higher than any other healthy person. However, my risks of getting the same tumor again are slightly higher so I am being watched closely and getting regular scans.

My post-Whipple lifestyle

After about four months, I began to feel more alive. I was able to keep down most of my meals, though every few days something would suddenly aggravate my insides and I’d vomit it right up.

However, I noticed that the food I did keep down would cause debilitating pain in my intestines and I would poop it right out. Because nothing was digesting properly, up or down, my weight continued to plummet.

I called my specialist and he put me on Creon, pancreatic enzymes from pigs. This would give my body what it was lacking so that I could properly digest food.

I saw my oncologist at about 6 months post-op and he told me that I have pre-diabetes, which is very common after a procedure on the pancreas. He said that not only because of that, but the fact that I hadn’t been eating for 6 months, it was to be expected.

His solution was to eat little bits of food all day long to regulate my blood sugar. Since eating generally made me nauseous, this was hard to imagine… but I committed to it.

Surprisingly, the transition from not eating to eating all day went pretty well. I still have to watch what I eat pretty carefully, but if I do I can keep my blood sugar at the highest it should be for a normal person and with what I’ve been through that’s totally acceptable.

At 9 months post-op I had lost a total of 65 pounds. At that point I had finally regulated my diet and learned how to deal with my pain well and my weight loss stopped, but it took a really long time to gain back some strength and begin to live a healthy life again.

That same doctor recently put me on Prilosec as well, an acid reducer. Because my gallbladder is gone, my liver began overproducing bile to compensate. Every time I ate any fat I would have severe reflux gurgling up and burning in my throat.

My new lifestyle means chronic pain and often fatigue. I can do my very best to eat perfectly and my body can decide to freak out and send me to the bathroom in excruciating pain. Other days I can eat an entire pizza and I feel fabulous and have energy to do everything absolutely normally.

My daily life is always a gamble. I don’t know which days will be good and which days will be bad. Sometimes I lay on the couch all day while my baby watches TV and eats fruit snacks. Other days we are going on long walks, eating wonderful meals and enjoying friends and family. It all depends on what my body decides to do that day.

My future is unknown. Because this surgery is most commonly done on older men (the highest ranking culprits of pancreatic cancer) the long-term statistics of this surgery are not known. There simply aren’t enough young people getting this procedure to know for sure. The new arrangement of organs that I have may or may not last forever.

For me, this is intimidating… for sure. But the truth is that if it were not for God, that mass would still be there. There’s no reason that it should have been found. Nobody actually knows why I went to the ER that night… maybe it was phantom pain that he gave me so that I would go and it would be found at just the right time.

We don’t know. But we do know that God has had his hand in this since the very beginning. Without him, this whole experience would have been horrific. But with him, it has only made me stronger. Everything from the timing of the surgery to the people put in my life to help me through it… every detail was obviously arranged by him and it has made my faith stronger than ever before.

Every once in a while, I find myself weeping…. crying out to God. I’ve had some anger. I’ve had some doubts. I’ve found myself wondering if it was worth all that pain and absolutely wrecking of my life just to get out a mass that wasn’t currently posing a danger to my life.

But I always find comfort in the fact that I don’t know.

I know…. that seems like an anomaly.

But if I did know, then it would be up to me to find solutions. I would be overwhelmed with anxiety trying to figure out what is next.

Friends, I don’t know. I don’t know what tomorrow brings. I don’t know how long my body will last. I don’t know if my cancer will return.

But this I do know with all my heart: that the one who created me and knows me intimately has a purpose far bigger than anything I could imagine. He knows. So today I cast my burdens on him and I give him my future. Today is all I have and I will use it to worship him, despite pain, despite unknowns. He is my all and he is worthy of all my praise.

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Proverbs 31:25  

“She is clothed with strength and dignity, and she laughs without fear of the future.” 

 

Matthew 6:34 

“Therefore, do not worry about tomorrow for tomorrow will worry about itself. Each day has enough trouble of its own.” 

 

Philippians 4:6-7 

“Do not be anxious about anything, but in everything by prayer and supplication present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” 

 

Psalm 55:22 

“Cast your cares on the Lord and he will sustain you. He will never let the righteous be shaken.”  

 

Psalm 136:1 

“Give thanks to the Lord, for He is good. His love endures forever.” 

 

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5 thoughts on “My Whipple Journey

  1. Maryann says:

    It is amazing what one human can be put through and conquer. I hope you enjoy a long and healthy life that you so much deserve❤️

    Like

  2. Marci Walter says:

    I agree, without God it would have been hard to make it. Friends and family were absolutely wonderful. The medical care I got (and still do receive) is exceptional. I am grateful to my heavenly Father for choosing to live in and through me everyday. I am grateful for every breath and every day that I have to glorify Him. Thanks for sharing. May you continue to know His love and live in His strength.

    Liked by 1 person

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