I am not sure where to start here. I know that I was highly afraid to get this surgery and finding information about what my recovery would be like was difficult. After months of consideration I chose not to get the surgery, and as I sat with that decision I felt I was choosing death, so I changed my mind and scheduled the surgery. I do not regret it. As I write this I am 31/2 weeks out and still learning how to use my new digestive system, but I can with reasonable hope say I’m cancer free. There is a possibility of stray cells ready to seed new areas and start over, and I have a genetic marker which makes me susceptible to cancer spreading through the sheath of my nerves, or so I’m told. After some more chemo I will feel more confident in my cancer free status.
I had Adenocarcinoma. The tumor was in the head of my pancreas and was blocking my bile ducts and until I had a stint placed I was unable to digest my food and sick from my liver, gallbladder and pancreas backing up into themselves. I did seven cycles of folfirinox and do have a defective BRACA gene making the platinum infusions work better on me. My Tumor responded well to chemo. The cancer’s tendrils pulled back, the tumor shrunk by about half and stray cells in the system were hopefully knocked out. But Chemo was hard and the accumulative side effects were getting really bad, so I stopped one cycle early. As I understand it this cancer builds a protective shell of it’s own dead cells making it very hard to beat without surgery.
Nov. 29 Surgery Day: I showed up at 5:30 am and by 9 am I was put under. There were difficulties and my surgery lasted 13 plus hours. I can only imagine how hard this was for my family in the waiting room or at home. But for me: I woke up around 11:30; it was dark and there were no other patients around me, just blue hospital sheet walls and a lot of doctors. It felt like an alien autopsy. Then I went back to sleep.
Nov. 30: On the next day I remember seeing my family, though I’m told I saw them the night before. I was so thirsty when I woke up, but was only allowed to swab my mouth with water. This lasted too long, but I don’t remember how long, just the thirst! Then I got ice chips, and then water. I did not have a epidural, but I did have a daludid drip which I could push every seven minutes. I had a catheter in my penis, a bunch of cables stuck to my chest monitoring my heartrate (I had super low heartrate for my week in recovery, like 40 bpm, but I was not dizzy or anything), and there was a tube coming out of my stomach draining fluid off and around my pancreas. Wires and cords were not my friends. But the truth was it was all a big drug haze. I don’t remember much so the details are few, but the pain wasn’t so bad and I got up and walked into the hallway that first day. This hurt and it was scary to think I could hurt my new stitches. I went probably 20 steps. The worst pain was in my shoulders and later my back. They strap your arms up over your head during the surgery. My back would be really sore for weeks from laying on that table so long. Some folks have bad pain in their tailbone, but mine was minor. The hospital bed put me in a reclined seating position, and stretching out strait put so much tension on my stitches, organs, and arteries!
Dec 1st- Dec 2nd: Everyday I got up and walked more. I did not hit my drip too often because I wanted to feel the pain to know where it hurt and what was going on inside me. I was taking 3000 mg of Acetaminophen (Tylenol) per day. The most pain was not in the organs but rather in breathing. I had to take very short breaths and not breath into my stomach, it put pressure on an already inflamed area. On the third day I think I was allowed food but it was an all liquid diet, and basically this meant chicken stock for me because I try to go low sugar, and everything on the hospital menu is sugar. After eating they were looking to see if anything came out of my rear end, gas was acceptable too, so long at it traveled through my digestive system. Gas did form and was quite painful, mostly I burped, but some farts, so that was good!
Where: My surgery was done at OHSU, a teaching hospital in Oregon. The Surgeon Dr. Mayo specialized in whipples and had done a lot, though I never asked for a yearly number. He and his staff were very professional, and Dr. Mayo came and met with me everyday I was in recovery (seven days). I completely recommend this hospital and surgeon!
What: They removed my gallbladder, duodenum, half of my pancreas and some of my stomach. The stint was removed from my bile duct and the bile duct was reconstructed and connected into a section of intestine that was pulled up to replace the duodenum. I had a blood clot in an artery in the middle of my pancreas, but after removing a section of it the vascular surgeon was able to stretch it out and reconnect it without grafting from my leg. There were a total of three major new connections and hundreds of stitches.
Dec. 3rd-5th: The next couple of days aren’t noteworthy in my mind. My daludid drip was removed and I was given 5 mg oxycodone. The catheter was removed, which was great, but it meant I had to get up to pee. They gave me Lasix to make me pee a lot. I was trying to drink water but consuming anything caused pressure. I was also asked to try some food. They wanted me to try a variety of foods to see if I could take them. I don’t remember exactly what I ate but not much. I tried meat but it was hard to digest and hurt, all food hurt, but I was hungry. A mango popsicle was my favorite (but plenty of sugar). I would also get my blood sugar checked before eating to see if my insulin levels were ok, and they were. I think there was a 35% chance of becoming insulin dependent, but I heard that even this could change after a few months, as your pancreas heals up. Through all this I wasn’t taking many pain pills, probably an oxycodone every 4 to 6 hours and the Acetaminophen. I think I wanted more pain pills after I left the hospital, I guess I got tired of being tough. I listened to audio books to stay busy and wrote in my journal, but reading was blurry. I had a TV but only watched it twice. I was up walking three times a day between 50 and 100 meters, and even went on some longer walks around the hospital. I had talked with a woman who got the surgery a few months before me. She said she worked out to build muscle mass before the surgery and then made sure to be up and walking around and was working out within a month after the surgery. I used her as motivation, and made those walks kind of a tool not to give up. You want to beat this you got to work for it was my mindset.
I loved my nursing staff so much and conversation with them was uplifting and positive. I have tired to make positivity a must since I found the cancer and didn’t let the surgery change that. On day six they talked of releasing me. Everyone jokes they want to leave the hospital, but I actually asked to stay longer. I felt safer in the hospital, and if something was going to go wrong I wanted to be there. They let me stay one extra day, but I was ready on day seven to leave, just not mentally. Before the surgery they gave me a four days to a week recovery estimate, but the nurses told me later that the whipples they saw, and their floor specialized in them, took one to two weeks to recover, so mine was actually quite fast.
Dec. 6th: This was day 7, or 8 if you count surgery day. I was released and went to the worst hotel ever for someone recovering from surgery! This was probably the hardest day for me. I was free in the world, on my own. Nooooo, bring me back to my hospital bed and awesome nursing staff taking care of me! I suppose a lot of this was mental but driving (passenger of course) was not easy, every bump was tense and hurt. Walking through the supermarket was exhausting, and then my hotel…This hotel was directed at business people looking to bring someone home after meetings and lots of drinking. The place was so cold, the blankets were heavy, and it took so long to heat up. The bed was 3 foot high and so hard to get in and out of. I tried to prop myself up with pillows but didn’t really sleep that night, it was misery! But hopefully you will go to a better hotel or strait to your home.
Dec. 7th and Beyond to 3 Weeks: This day we drove back to my home, about six hours. Sitting in the car was ok, reclined. I slept a lot. Now would begin home recovery which was again a slow process. But I was up and moving around as much as possible, going on short walks and trying to be active. At about three weeks after surgery I was lifting some 5lb weights, and attempting a very easy workout including Qi Gong breathing exercises, light yoga and light stretching, and walking. After one week home I weaned to three or four oxycodone a day. Sleeping was really hard as my back hurt so bad. I slept in a chair at first because laying out on my back stretched out my stomach and reconnected artery too much. I would wake after an hour and could feel the blood pulsing and pain throbbing. I slept on my side for an hour, but it put stress on my pancreas so after that only my back with a pillow under my knees. By day five at home I was out of the chair and sleeping in my bed. The back pain persisted, but slowly lessened for the duration of three weeks I’d been home. I still needed a pain killer in the night to sleep and for some reason I woke every hour without fail to pee, whether or not anything came out. I missed sleep. But all in all, the real challenge after getting home was learning to eat.
Eating: I was put on a very low fat diet by the doctors because I had a “chyle leak”, which was triglycerides coming out of the pancreas. I had to eat under 10g of fat a day, really hard. I also choose to go very low sugar. Eating sugar made me feel like it was running strait through me and I needed to run to the bathroom. Easy to digest foods were best, so little as I liked it, I didn’t eat many vegetables or whole grains. Chicken was been my friend, and refined flour snacks like saltine crackers. A lot of people suggest mashed potatoes. Really any simple carbohydrates are easy to digest. My mother made me a very rich beef bone broth which nourished me well, and I ate live cultures though they sometimes produce gas, but helped get my gut functioning properly! Eating small meals and snacking more often is key. The bigger the meal or the harder to digest, the more it put me down. After eating I got super tired and sometimes napped. I could feel blood pumping in my stomach and temples. After about twenty minutes I would get the chills. The surgeon’s nutritionist told me my body was diverting all it blood to my digestive system to help digest the food. This felt correct to me.
On Christmas, about 3 1/2 weeks from the surgery I was able to eat a delicious low-fat dinner I made and shared with family, and I digested it without too much problem. In the previous week my digestion had improved and I was able to eat with less pain and fatigue. I always took my Creon (digestive enzyme) with meals. I drank a little water, but not much, and ate small meals.
Post Surgery 1.5 Months: I had some setbacks with my drain hose staying in too long, but it is out now. It irritated my insides and maybe did some damage, there was bleeding and the pain was incredible, and had to go to the ER to get it taken out. Here my surgeon fell short. In terms of my body growing strong through exercise, this set me back 3 weeks…
I am eating a higher fat diet, but still fairly low, about 25g a day. I eat some whole grains and vegies and beans, but still eat a lot of simple carbs and chicken. I keep my meals small, drink a bit of water with them, and then drink a good amount of water about 20-30 minutes after finishing. If I don’t eat a big meal, I don’t get the ball of food in chest feeling. Walking after helps too. Sleep is still not easy for me and I wake often, but my back pain has gone away. I am not exercising the way I’d like but will start again soon, the drain was removed one week ago and feels like its close to healed. I am not taking any pain killers, which is a struggle its own, physically. Sitting up strait for too long a period gives me stomach cramps. Other than that I’m doing great. I am ready to get strong, to go on hikes and exercise. Eating is not what it was before surgery but it’s not painful either. I am putting a date of Feb. 15th to start chemo again (11 weeks after surgery), but will delay if my body does not feel strong enough to handle it. I have five cycles to go to make the desired 12. I try not to worry about cancer coming back, but chemo will be a good precaution. I do my own anti cancer routine as well: Chinese herbs, mediation, positive mindset, diet (somewhat thrown off).
Best to you all out there, if you are preparing for this surgery or thinking about getting it. I hope this has been a clear picture of my journey through it. I am happy I got a whipple, and I believe I can live a long life after.
Arriving at Departure 