A place to keep family and friends updated on my life.
Today was my second treatment and Rob went with me this time. I had an awesome view of the mountains (hills) this time and I-505. I had a different RN, his name is Sam, but Danielle did come over to see how I was doing, making me feel very comfortable, it was very nice.
So I've lost another 3 lbs. since last week, so not too bad. Treatment started like it did last week and I got the anti-nausea meds. and started an IV in my other hand. I'm so happy I'm getting my port tomorrow, no more poking and pain putting IV's in my hand. Sam did a wonderful job, he minimized my pain which of course is always good, and got the vein on the first try. My temp was at 99 so he called my oncologist and checked to make sure it was still good to proceed since all my labs came back in really good shape.
Here's where just a few of my blood levels are at:
Last week: white blood count 7.2, hemoglobin 11.4, and red blood count 4.37
This week: WBC 3.7, HBG 9.8, red blood count 3.74
Once again the Gemzar started and Sam cut it down with saline since it was burning again. Then to completely get rid of the burn he put a cold compress on my hand, worked perfect. So Rob and I hung out and talked. I did get a little tired and nauseated towards the end so Sam gave me some Compazine and it knocked it out.
We then went to Big and Tall and got Rob some pants and a cool Wolverine Marvel t-shirt, very cool and then we went to Avenue, because I was in serious need of a belt and found one, YEAH, and then for lunch we went to Bay Sushi!!! I had the tempura shrimp and veggies and then a Reno Roll.
I am happy to report that I have had an awesome day!!!! I was a little tired so I layed down and took a little nap, woke up with a little headache, but not bad. So far no bone pain, no nausea, nada!!! I love good reports.
I want to thank all of you for your support, calls, emails, positive thoughts and prayers. I can't even explain how important it is and means so very much to Rob and I that everyone has been incredibly supportive. Thank-you so very much.
Until next time,
Kate
Monday, August 31, 2009
Sunday, August 30, 2009
Me and the ER
Yesterday I had been feeling not so great and spent my entire afternoon in bed. At some point I realized that I was really warm and took my temp. 101.6. My usual temp is 97.6, so 4 degrees was a big deal. I call my friendly Kaiser advise nurse and the ER Dr. said I need to come in and have some blood work done to make sure I don't have an infection brewing somewhere.
The ER. It's the place I hate the most, not that anyone likes it, but from my past numerous experiences, it has been a pain in the ass. Sitting in the waiting room for hours and then sitting in the ER bed for hours, which usually ended up lasting over 12 hours. Granted the last 4 times I was in the ER I was also admitted to the hospital and I knew this time that wasn't going to happen for a fever.
I had taken some tylenol and my temp. had gone down a degree but we drove to Vallejo anyway. Side note, I can't wait for the ER in Vacaville to open!!! (for those that don't know, it's closer and just a nicer town to go to) So we're sitting outside of the ER and I check my temp again and it's gone down another degree. I figure what can I lose, I'll call the advice nurse again and maybe I can avoid this whole senerio. Needless to say they still wanted to do blood work.
I check in and ask for a mask since I had forgotten one of my own and I sat in the waiting room for less than 5 minutes and was called into triage. And then it happened......I didn't have to go back to the waiting room, I went immediately to a bed. Yes, it's sad to say, but I was so excited, that right there cut 4 hours out of our long expected stay. They took many viles of blood and a urine sample, good thing I had to go, and then I waited. I'm not sure where these tests go, but it sure did take a long time for the results to come back. While waiting the nurse had put in an IV and after all was said and done I didn't even need it. My results were all good, white blood cell count was good......woohoo.
So the ER Dr. came in and said that it all was good and that I may be a little dehydrated would I like some fluids (through the IV) I said nope I'm good let me out of here. He responded with not a problem.
We got to the ER around 9:30pm and left at 1:10am, it's a new ER record!!!
Just an update of what happens next:
Monday I have my 2nd chemo treatment.
Tuesday I have my port put in.
The following Tuesday I have my 3rd chemo treatment and then I have 2 weeks off.
I'll update after my next chemo treatment.
Til then keep those prayers and positive thoughts coming!!!
Love you all,
Kate
The ER. It's the place I hate the most, not that anyone likes it, but from my past numerous experiences, it has been a pain in the ass. Sitting in the waiting room for hours and then sitting in the ER bed for hours, which usually ended up lasting over 12 hours. Granted the last 4 times I was in the ER I was also admitted to the hospital and I knew this time that wasn't going to happen for a fever.
I had taken some tylenol and my temp. had gone down a degree but we drove to Vallejo anyway. Side note, I can't wait for the ER in Vacaville to open!!! (for those that don't know, it's closer and just a nicer town to go to) So we're sitting outside of the ER and I check my temp again and it's gone down another degree. I figure what can I lose, I'll call the advice nurse again and maybe I can avoid this whole senerio. Needless to say they still wanted to do blood work.
I check in and ask for a mask since I had forgotten one of my own and I sat in the waiting room for less than 5 minutes and was called into triage. And then it happened......I didn't have to go back to the waiting room, I went immediately to a bed. Yes, it's sad to say, but I was so excited, that right there cut 4 hours out of our long expected stay. They took many viles of blood and a urine sample, good thing I had to go, and then I waited. I'm not sure where these tests go, but it sure did take a long time for the results to come back. While waiting the nurse had put in an IV and after all was said and done I didn't even need it. My results were all good, white blood cell count was good......woohoo.
So the ER Dr. came in and said that it all was good and that I may be a little dehydrated would I like some fluids (through the IV) I said nope I'm good let me out of here. He responded with not a problem.
We got to the ER around 9:30pm and left at 1:10am, it's a new ER record!!!
Just an update of what happens next:
Monday I have my 2nd chemo treatment.
Tuesday I have my port put in.
The following Tuesday I have my 3rd chemo treatment and then I have 2 weeks off.
I'll update after my next chemo treatment.
Til then keep those prayers and positive thoughts coming!!!
Love you all,
Kate
Tuesday, August 25, 2009
1st Chemo Treatment
My day started at 6am, not that I wanted to be up then but wasn't able to fall back asleep. I thought a lot about how the treatment was going to go today and whether or not I would feel any of the side effects or if this would be my freebee week and I wouldn't feel anything at all.
Mom picked me up at 8:30 and we were off to Vacaville to the new building B, 4th floor. Since it's a new building it was very quiet and seemed very empty. We checked in and they took me back to the where all the chairs were for the chemo patients and everyone has this wonderful view of the mountains and I-80.....lol, but a nice view non the less. My nurse today was Danielle and she was wonderful. I had some anti nausea meds first and then she put in my IV and started some saline. She asked why I wasn't going to have a port put in and having a PICC line as that would have to go in and out and she said that she could ask my Dr. about having a port put in and I said yes, I would prefer it. A port is put in surgically into my chest and will be there permenantly until they remove it. What it does is give immediate access and I won't have to be poked repeatedly for IV's and when I have my infusion of 5-FU, which will be coming home with me, it will be easier than having the PICC line coming out of my arm. So Danielle called my Dr. and she put in a referral for that to happen.
Danielle then gave me all sorts of support information and numbers to call should I need to talk to someone and reassured me that I was not alone in this process. She also told me that I would lose my hair with in 2-6 weeks. We had to wait for awhile as the lab was taking it's time making up my Gemzar. Finally it arrived and Danielle hooked it up and said that it might burn going in and to let her know. After about 30 seconds, indeed it began to burn and she ran saline with it and it helped a lot.
Mom and I then played a game of cribbage. She kicked my butt of course........lol But we only had time for one game as the Gemzar is given within a 30 min. time period. So after that was done we were all good, I was feeling good, so we ran a few more errands at Kaiser and then we were off to the Olive Garden for lunch.
Olive Garden of course was awesome. Mom said that I needed to try the Shrimp and Chicken Carbonara. OMG!!! So rich and creamy......everyone must try it!!! I also had their peach tea and they put slices of peach in it, was also very good. We made it back to my house and mom hung out until I was ready for a nap around 3.
I went upstairs and slept for about an hour and woke up with chills and a headache. I took some anti nausea and pain meds and it didn't work. I can't explain, all over body aches, couldn't get comfortable, it was just awful. Around 6pm or so I finally gave in and vomited which of course is just gross but my body felt a little better and I fell asleep for a little bit. When I woke my head was about to explode and my legs felt like I had run a marathon and all the lactic acid was built up and wasn't going away. I just couldn't get it to stop. I took more pain meds and I finally fell back asleep around midnight. Phew, I survived. Man, if this is what it's going to be like after each treatment, I would just rather sleep right through it. Well no one said it was going to be a walk in the park, but wouldn't that be nice???
Mom picked me up at 8:30 and we were off to Vacaville to the new building B, 4th floor. Since it's a new building it was very quiet and seemed very empty. We checked in and they took me back to the where all the chairs were for the chemo patients and everyone has this wonderful view of the mountains and I-80.....lol, but a nice view non the less. My nurse today was Danielle and she was wonderful. I had some anti nausea meds first and then she put in my IV and started some saline. She asked why I wasn't going to have a port put in and having a PICC line as that would have to go in and out and she said that she could ask my Dr. about having a port put in and I said yes, I would prefer it. A port is put in surgically into my chest and will be there permenantly until they remove it. What it does is give immediate access and I won't have to be poked repeatedly for IV's and when I have my infusion of 5-FU, which will be coming home with me, it will be easier than having the PICC line coming out of my arm. So Danielle called my Dr. and she put in a referral for that to happen.
Danielle then gave me all sorts of support information and numbers to call should I need to talk to someone and reassured me that I was not alone in this process. She also told me that I would lose my hair with in 2-6 weeks. We had to wait for awhile as the lab was taking it's time making up my Gemzar. Finally it arrived and Danielle hooked it up and said that it might burn going in and to let her know. After about 30 seconds, indeed it began to burn and she ran saline with it and it helped a lot.
Mom and I then played a game of cribbage. She kicked my butt of course........lol But we only had time for one game as the Gemzar is given within a 30 min. time period. So after that was done we were all good, I was feeling good, so we ran a few more errands at Kaiser and then we were off to the Olive Garden for lunch.
Olive Garden of course was awesome. Mom said that I needed to try the Shrimp and Chicken Carbonara. OMG!!! So rich and creamy......everyone must try it!!! I also had their peach tea and they put slices of peach in it, was also very good. We made it back to my house and mom hung out until I was ready for a nap around 3.
I went upstairs and slept for about an hour and woke up with chills and a headache. I took some anti nausea and pain meds and it didn't work. I can't explain, all over body aches, couldn't get comfortable, it was just awful. Around 6pm or so I finally gave in and vomited which of course is just gross but my body felt a little better and I fell asleep for a little bit. When I woke my head was about to explode and my legs felt like I had run a marathon and all the lactic acid was built up and wasn't going away. I just couldn't get it to stop. I took more pain meds and I finally fell back asleep around midnight. Phew, I survived. Man, if this is what it's going to be like after each treatment, I would just rather sleep right through it. Well no one said it was going to be a walk in the park, but wouldn't that be nice???
Girls Night
This last Friday was very exciting and packed with all sorts of things.
It started out with mom picking me up to have my labs done for coumadin levels and all my other levels for chemo on Monday. From there we went to Black Bear for breakfast and even when I ordered from the "lighter side" of the menu it was still way too much food. Guess I'm just going to have to get used to that.
Then we went to Beauty Etc. in Suisun, it's in the Raley's shopping area next to the tanning place. Never knew it was there and holy cow do they have everything you could possibly want in wigs and hair pieces and everything to do with hair. So I tried on a few wigs, which was a little weird but as I had them on and got used to the different look, it was pretty cool. So mom was awesome and said do you want to get these and I said yes and she bought my new hair for when I lose mine. Very cool!!!!
We then made a trip to costco for a few items for the girls night and the best part was that I had the refund check from having the black premium card from costco and it didn't cost me a penny. Woohoo!!!
Mom dropped me off at home and Rob was home around 1 and we went and picked up moomoo from school. She was very excited to see us and we brought her back to our house where Krystal and David had already arrived. Then the cleaning began.......it wasn't as bad as I thought but it was quite exhausting. I made my famous taco meat and cut up tomatos and onions so everything was ready for tacos for dinner.
People showed up around 6 and there after drifted in and it was a good night. I showed off the wigs and everyone liked them. Tami bought all of us girls bandanas for those days that I'm not going out and just being at home that I have something to put on my head. On girls night we will all be sporting our bandanas and I have extras for those that weren't at this first one. It was very nice to have friends and family at my house. Granted it felt like I had done a marathon that day, but it was good all the same.
I look forward to our next girls night next month. As of yet, nothing has been scheduled but will let the girls know when the next one is.
Wednesday, August 19, 2009
Telling Emily
As some of you may or may not know that I have a 6 yr. old niece, Emily. I affectionately call her Miss Em, Miss Moomoo and just Moomoo. I have no idea where moomoo came from, it just happened.
So tonight we decided to tell moomoo that even though I'm not in the hospital, that her auntie isn't better yet. I drew the shape of a body on a piece of paper and I put little smiley faces and angry faces around my abdomen area. I told moomoo that auntie has cancer, and then I asked her if she knew what cancer was and she shook her head no. I explained that I have these angry cells in me that can make me sick and that I'm going to be getting some medicine called chemo that's going to help get rid of it. I showed her that the chemo would get rid of the angry faces but that it would also get rid of the smiley ones too. Moomoo asked why it was going to get the smiley faces and I told her that the medicine doesn't know the difference between the smiley and angry faces.
So far so good.
I then told her that when the medicine gets rid of the smiley cells that some of those smiley cells are aunties hair and that auntie will most likely lose her hair. Em put her hands over her eyes and said, "no, no, no". This is when I lost it and she asked why I was crying and I told her that I didn't want her to be scared of auntie. She said, "I don't want you to lose your hair". Krystal and I reassured her that after the medicine was done that my hair would come back and that I would be getting some wigs to wear when I was out in public. She continued to cry and shake her head that she didn't want me to lose my hair and that this has never happened before. I held her and let her know that it was going to be ok. I also let her know that there will be times that I can't be in public or large groups of people because I could get sick so I'll be wearing a pink face mask. I let her know that uncle and I ordered some pink face masks for us to wear. After a good 15 minutes or so we were ok and I asked her if she was hungry, she said yes and we made pizza. Pizza solves all our worries doesn't it??? Well, it did tonight, at least for awhile. Em wanted one of her favorite movies in so we watched "Spirited Away" while we had pizza.
Em and Krystal went and played on the computer after we put the pizza in the toaster oven and I went upstairs to pull myself together. Cancer sucks!!! I hate that it has to effect everyone around me as it just hurts to see family and friends hurt. It's just not fair. But I'm not the first to go through this and I'm sure won't be the last. A few days ago my mom told me that my Gramps' wife Marte has bone cancer and is starting radiation immediately as it was found in numerous areas of her body. So when you have those prayers going out Marte could use some too.
I wrote my oncologist today to find out my schedule for chemo and radiation. Holy cow!!! Here's the schedule:
Starting on the 24th, one treatment of Gemzar for each of the next 3 weeks.
Then I'll have 2 weeks off to recooperate.
Then chemo (5-FU) and radiation congruently. I will have a PICC line put in as I will be getting the infusion of chemo over a longer period of time. At least I've had 2 PICC lines and know what to expect. I believe this will go on for 5 weeks, at least I know the radiation will.
I'll have 4 weeks off to recooperate.
Gemzar for 3 weeks.
4 weeks off.
Gemzar for 3 weeks.
Treatment is over.
So by my calculations that's 24 weeks.
Well, that was enough for one day. Thank-you for your positive thoughts and prayers.
Kate
So tonight we decided to tell moomoo that even though I'm not in the hospital, that her auntie isn't better yet. I drew the shape of a body on a piece of paper and I put little smiley faces and angry faces around my abdomen area. I told moomoo that auntie has cancer, and then I asked her if she knew what cancer was and she shook her head no. I explained that I have these angry cells in me that can make me sick and that I'm going to be getting some medicine called chemo that's going to help get rid of it. I showed her that the chemo would get rid of the angry faces but that it would also get rid of the smiley ones too. Moomoo asked why it was going to get the smiley faces and I told her that the medicine doesn't know the difference between the smiley and angry faces.
So far so good.
I then told her that when the medicine gets rid of the smiley cells that some of those smiley cells are aunties hair and that auntie will most likely lose her hair. Em put her hands over her eyes and said, "no, no, no". This is when I lost it and she asked why I was crying and I told her that I didn't want her to be scared of auntie. She said, "I don't want you to lose your hair". Krystal and I reassured her that after the medicine was done that my hair would come back and that I would be getting some wigs to wear when I was out in public. She continued to cry and shake her head that she didn't want me to lose my hair and that this has never happened before. I held her and let her know that it was going to be ok. I also let her know that there will be times that I can't be in public or large groups of people because I could get sick so I'll be wearing a pink face mask. I let her know that uncle and I ordered some pink face masks for us to wear. After a good 15 minutes or so we were ok and I asked her if she was hungry, she said yes and we made pizza. Pizza solves all our worries doesn't it??? Well, it did tonight, at least for awhile. Em wanted one of her favorite movies in so we watched "Spirited Away" while we had pizza.
Em and Krystal went and played on the computer after we put the pizza in the toaster oven and I went upstairs to pull myself together. Cancer sucks!!! I hate that it has to effect everyone around me as it just hurts to see family and friends hurt. It's just not fair. But I'm not the first to go through this and I'm sure won't be the last. A few days ago my mom told me that my Gramps' wife Marte has bone cancer and is starting radiation immediately as it was found in numerous areas of her body. So when you have those prayers going out Marte could use some too.
I wrote my oncologist today to find out my schedule for chemo and radiation. Holy cow!!! Here's the schedule:
Starting on the 24th, one treatment of Gemzar for each of the next 3 weeks.
Then I'll have 2 weeks off to recooperate.
Then chemo (5-FU) and radiation congruently. I will have a PICC line put in as I will be getting the infusion of chemo over a longer period of time. At least I've had 2 PICC lines and know what to expect. I believe this will go on for 5 weeks, at least I know the radiation will.
I'll have 4 weeks off to recooperate.
Gemzar for 3 weeks.
4 weeks off.
Gemzar for 3 weeks.
Treatment is over.
So by my calculations that's 24 weeks.
Well, that was enough for one day. Thank-you for your positive thoughts and prayers.
Kate
Friday, August 14, 2009
It's a new day and a lot has changed...
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
Kate
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
Kate
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