It's been a very long time since I've blogged, but a lot has changed and I will be doing my journaling and updating here. If you would like to receive notices of when I post please subscribe to my blog.
This journey started in January of this year when my skin began to itch uncontrollably. I asked my physician to order lab tests for bilirubin as I had this same condition last year and I had a blocked common bile duct. The tests showed that my bilirubin and my liver enzymes were very high and I was referred to the GI dept. at Kaiser. This process of course was very slow and no one knew why I was having these symptoms.
In March, eating solid food began to hurt and ultimately stopped passing through my system forcing me to vomit. Poor Rob after sitting with me at the ER all night had to come back to a mess as I never made it to the bathroom. Go Rob!! I was admitted to the hospital and stayed for 12 days, still not able to eat and now vomiting bile. I was referred to Dr. Binmoeller at Cal. Pacific Med. Center in San Fran and 2 ERCP's were attempted. The first time there was still food in my system and they had to stop and the second attempt they couldn't get the scope past the duodenum.
I was sent home and I believe I was only home for about 5 days and I was vomiting again and in severe pain on my right side. So we're back in ER and finally admitted to the hospital after 12 hours. I believe this time they attempted another ERCP and a stint was placed in my common bile duct and I was sent home. Once again things went wrong and I woke up at 4am with violent chills and severe pain on my right side. We called 911 because I couldn't handle sitting in the ER and not being seen. This is now the 3rd visit to the ER and admission to the hospital and still no one has any answers. They had to replace my stint twice as it became blocked and my liver enzymes were extremely high. They placed a drainage tube that went in my right side through my liver and into the bile duct. This process was awful!!! I think something went wrong because I was under local anesthesia and I woke up and felt everything as they were still putting the catheter through my side. The nurse there had to physically hold me down because I was trying to get off the table, the pain was indescribable.
Once again I was sent home with this catheter and 5 days later I again was in extreme pain. We called 911 and I was back in the ER. The nurse said at one point that they were going to release me and I about lost it. I was like WTH... needless to say I was admitted for the 4th time. During this visit I experienced fluid around my right lung, very painful, and they tried 3 days in a row to remove the liquid around my lung. This requires an ultra sound, a very long needle and not nearly enough numbing medication. They put the needle in between my ribs and then they remove the liquid pocket but not much was coming out. Thankfully my body began to reabsorb the liquid and they didn't have to do a more severe procedure.
They also put in a PIC line which is a more permenant IV access, since every three days they would have to remove the IV and find a new spot. I was running out of spots, from my arms, forearms and hands. I even had an IV in my shoulder at one point because they couldn't get a line in anywhere else. They have also started me on TPN which is liquid nutrician since I couldn't eat and I was losing weight quite rapidly. So after 3 weeks in the hospital it's been decided that surgery in necessary and that I'll be transferred to Walnut Creek.
Once at Walnut Creek I of course had one more CT scan and prior to going there I was transported to have an MRCP done in Vacaville. My surgeon Dr. Fuchshuber (Fook-shuber) is a world renouned in biliary surgery. He believes that my panceas is malformed and has wrapped around my duodenum causing the blockage and inablility to eat food. I'm still vomiting bile every 2 days or so and he orders an NG tube. That's a tube that goes through your nose and into your stomach. I can't even explain how painful this procedure is and how uncomfortable it is. For the next 2 days I barely slept, could barely talk and my head felt like it was going to explode. Dr. F ordered another CT scan and saw that the end of the NG tube had folded on itself and wasn't doing what it was supposed to anymore so he ordered it to be removed and replaced. I thought putting it in was bad, taking it out was just as bad. At this point I was like I do not and will not allow you to put that back in my body. Thankfully I had stopped vomiting because of a new medication and as long as I didn't vomit, I didn't have to have the NG tube put back in.
So now it's surgery time. The first one I've ever had and it was exploratory since he really didn't know what he was going to find once he got in there. We knew that he would definately take out my gallbladder and probably the common bile duct but beyond that it depended on what he found. What we didn't want was a "whipple" procedure. This surgery is very extensive, invasive, long recovery and it would mean taking out my gallbladder, common bile duct, duodenum, part of my stomach and a sliver of my pancreas. Unfortunately Dr. F performed the whipple procedure because he found cancer in my duodenum. The blockage was a tumor that engolfed my entire duodenum.
This surgery took 5 1/2 hours and I remember being put on the bed as they rolled me with a sheet, again nothing to compare the pain to. I had an incision 10inches long on my upper abdomen from right to left. There were 35 staples holding me together and he did an awesome job closing me up. I had 2 JP drainage tubes coming out of my right side to collect fluid. I have another NG tube in, but this time it's not nearly as painful as the first one except when the nurses would try to move it. I also have a urine catheter, so I have tubes coming out of everywhere at this point. At the time it seemd as though I couldn't get enough pain meds to stop the pain entirely, but I was on a lot of IV Dilaudid. I had a pump that I could administer more Dilaudid every 10 minutes and I could get a bolise every hour.
The morning after surgery Dr. F came in and told me that they performed the surgery and that they found cancer. I don't remember if he said anything after that, I just remember saying "wow" over and over again.
The best road to recovery is of course getting out of bed and walking. I was like you have got to be kidding. The day after surgery I didn't get out of bed but I believe on the second day I got out of bed and sat in a chair for 30 minutes. Each day got a little better, but having all the tubes coming out of me made walking a very interesting situation, but I still did it. After one week the NG tube and the catheter were finally taken out. This of course meant I had to go to the restroom on my own now and that was such a foreign experience because I couldn't bend and my legs felt like jello.
I stayed in the hospital for 4 more weeks after surgery, there were some complications like high white blood cell counts, so fear of infection and at one point there was a pocket of fluid that Dr. F though he would have to go in and drain it. Thank God that my body took care of it on it's own and no more procedures were needed. I did end up with 2 blood clots in my right arm where the PIC line was so they had to remove it and put in another line. This also meant that they started giving me coumadin and lovenox. I will be on coumadin until the end of the year and boy does that suck.
After about 3 months of not being able to eat solid food and being on TPN and then clear liquids, I'm not sure that I will ever eat jello again, then full liquids and mechanical soft food I finally get to eat solid food. You just never know how much you miss chewing until you can't eat anything solid. It was awesome!!! My stomach at this point has shrunk and I can barely eat 1/2 cup of anything. I've lost 50 lbs. or more from Jan. to June. I haven't weighed this weight since I can't even remember when. Very, very bad way to lose weight, but it has been a wonderful benefit.
During my recovery and each hospitalization my family and friends were/are the most supportive and have always been there for me. There were many times that I broke down just from being tired of being sick and no one knowing what was wrong with me. All the prayers and positive thoughts have helped me through this and continue to help me every day.
June 4th is when I had surgery and my recovery has been long but has also gone much better than Dr. F ever thought it could. Every day he came in he had a smile and was so happy that things were well that my recovery was better than he could have anticipated. Rob has been such an awesome support and I know this has and continues to be very hard for him, I can't tell you how much he means to me and I'm not sure I'd be where I am today without him. I couldn't have asked for better family and friends to help me get through this, everyone has helped me when I'm down and have just been there so I wasn't alone. My mom has been there with me everyday and she is without a doubt the best mom in the world. Krystal stayed at the hospital over night on numerous nights just to be there with me and that was priceless. Visits from family and friends was great even though they saw me at my worst but of course were/are extremely supportive with positive thoughts and prayers.
I've had an oncology appointment and it was decided that the best route is to do chemo and radiation. Since duodenal cancer is rare, not much research, if any, has been done to know the best course of action to take. So we're doing everything we can to ensure the cancer doesn't come back. This last Thursday I had a radiation appointment to put the markers on me and do a CT scan so they have a baseline to work with. They had told me that they were going to "tatoo" me at this appointment and my take on that was that they would use the purple surgical marker to mark me since that stuff takes forever to come off. No, they literally tatooed me, prison style. The nurse marked me with "X's", 3 down my abdomen and one on each side, right and left. She then put a drop of black ink on my skin and used a needle to get the ink under my skin. There goes the bikini I was looking forward to wearing....ha ha ha. She said I could have it made into something prettier once this was over. I think not. I don't particulary want a tatoo down the front of me like that.
My first chemo appointment is on August 24th. One of the common side effects is loss of hair so in preparation, mom and I went and had our hair done today. I believe this is the shortest I've ever had my hair in a very very long time. Very liberating and different. Over the last months I've been losing large amounts of hair due to stress so this helps with the transition of having no hair at all. I'll be posting a new picture soon as I don't look like the current picture.
I want to thank everyone for all your support and prayers and keep those prayers coming as this journey continues towards recovery. I can't express how much you all mean to me, your love and support is overwhelming and greatly appreciated.
I will continue to journal and update you about my experiences and the process and progress that is to come.
Until next time
- ▼ 2009 (18)