The Continuing Saga of My Cancer and Its Side Effects
Sorry it has been so long since I posted an update on my medical condition. A lot has happened since my last update.
As anyone who has seen me in recent months can testify I've been having problems with abdominal bloating since my tumor has started shrinking. It turns out that, for some reason, my abdomen keeps filling up with a fluid that is a combination of lymph fluid, proteins, and fats. In the course of a little over 6 weeks doctors drained 29 liters of fluid out of me in four drainings.
My mom actually took pictures at the second draining. This was 2 weeks to the day from my first draining where they took out 5 liters.
Before Draining
After Draining
Bottles of Drained Fluid
The bottles in that last picture contain 9.5 liters of fluid.
The fluid buildup, while not a health hazard, was a major comfort and quality of life issue. I was bloating up to the size of a woman 9 months pregnant in the course of only 2 weeks. The pain from my muscles and skin being stretched to their absolute limit was so bad that I was having to take the maximum amount of pain medication I was allowed per day just to be able to get out of bed and move. Sudden changes of direction would cause the fluid to slosh in my abdomen and cause nausea and pain. When I would lay down to sleep if I shifted how I was laying the fluid would all collect at one side or the other of my body. It just wasn't a comfortable or (and as far as pain management is concerned) healthy way to live.
So after talking to Dr. Schwartz about the issue we decided that the best option was for me to have this thing called a Tenkhof Catheter placed in my abdomen so that I could drain the fluid daily on my own at home and prevent these huge build ups. The only problem was that in order to have the procedure done at Memorial Sloan Kettering I would have to make an additional 2 trips to New York in the same month as my regular appointment. Since it costs us approximately $300 per trip and Mom only makes about $1,200 per month this was a bit of a problem financially. Additionally, if at some later time something were to go wrong with the catheter I would have to make another trip to NY to get it fixed since no hospital other than the one who placed it will work on a Tenkhof.
We decided to try and get the procedure done through Hershey Med so that we could avoid the extra $600 in travel expenses and have the hospital nearby if, heaven forbid, something were to go wrong with the catheter down the line. Mom called them to try and set it up before we were scheduled to go out to Ligonier for the bluegrass festival on father's day weekend some friends of hers had given us tickets to. The nurse we have to deal with at Hershey pretty much interrogated Mom as to why Dr. Schwartz wanted this procedure done. At one point the conversation went like this:
Nurse: And what does he hope to accomplish with this procedure?
Mom: Healing my Daughter!
Nurse: Oh. They think they can do that now can they?
Mom: Think!? They've been doing it for the past 6 months now! Otherwise [my Daughter] wouldn't be alive today! Something that your hospital couldn't do!
Nurse: Well, I'm not really familiar with this procedure so I'll have to do some research and get back to you about this.
Mom: How about you do your research by contacting her Doctor in NY and discussing it with him?!
So Mom gave her the number for Dr. Schwartz's office so they could talk. Days pass with no word from either hospital until it gets close to the weekend of the festival. Dr. Schwartz himself calls me and informs me that he has spoken with the doctor at Hershey and that in his professional opinion I should NOT get the procedure done at Hershey. According to him the doctor was "uppity" with him and then informed him that Hershey doesn't use Tenkhofs so they would be (to use his words) jury rigging a smaller catheter intended for the chest. He guaranteed me that if I went ahead with the procedure at Hershey the catheter would go bad in approximately 2 months and need to be replaced. Since this is the man who saved my life when three other hospitals (including Hershey) had pretty much told me to go home and die I listened to him. He assured me that I was in no danger from the buildup in my abdomen and that there was no rush to get this procedure done. He told me to go to the festival and have a good time; "You need a trip that isn't to a hospital or doctor for once. Go have a good time!"
Mom, Taffy, and I went to the festival that weekend and relaxed with good friends and good music. It was probably the best either of us had felt since I had been diagnosed back in December.
When we got home there was a message from Hershey trying to contact us about an appointment for a procedure we had scheduled for that week. The only problem was, we never scheduled any appointment with them for that week. They had gone ahead and scheduled something without our consent. It was already past their office hours when we got the message and they hadn't left a callback number in the message so we had to wait for them to call us about it again. They never did.
The appointments for the pre-procedure check and the procedure itself were made right after we got back from the festival. On June 26th I went up and had my testing done and got another 10.5 liters drained out of my abdomen. Everything was set and I went back to NY on the 30th to have the procedure. This trip was to be 2 days long since an overnight stay is required after the procedure so Mom had had to schedule the time off from work. I was the whole way to the procedure room and we were waiting to talk to Dr. Brody who would be doing the procedure and fill out the standard, obligatory consent paperwork when she sprung something on us. She had just gotten off the phone with Dr. Schwartz about my procedure and I now had the option of having a different procedure done.
The new option was to have this thing called a Denver Shunt put in instead of the Tenkhof Catheter. The Denver Shunt would, instead of draining the fluid out of my body, redirect it into my circulatory system. After going over my blood work Drs. Schwartz and Brody had realized that the amount of protein and fat I was losing by having the fluid drained out was beginning to have a negative effect on my body. There is no dietary way that I could replenish the amount of protein and fat I was losing and if we continued to drain fluid out it would only get worse. By redirecting the fluid into my circulatory system my body would be able to absorb the protein and fat it needed and the excess fluid would be converted into urine. There would be nothing external that would need constant upkeep and I would be able to live a more normal quality of life with the Denver Shunt than if I were to get the Tenkhof Catheter. The only upkeep I have to do with the Denver Shunt is in the morning when I get up and at night when I go to bed I have to pump it 20 times to make sure the filters stay clear. There is this bump under my skin where the pump rest on top of my ribs for stability and I lay on my side and press a soft spot in the pump with my finger. It doesn't even hurt!
Dr. Schwartz also wanted me to get my mediport removed because it was now quite apparent that I had no need for now, nor would I in the future. The Denver Shunt connects to the same artery(?) that the port does and while they can both be in place, it is very hard on the body to have it that way.
After some discussion Mom and I decided to have the Denver Shunt put in and the Mediport taken out. The procedure went quickly after that and everything was put in/ taken out with no problems.
My stay at the hospital was extended by a day because it was necessary to monitor my blood work for longer to make sure that a very rare issue that can arise with the Denver Shunt wasn't occurring. Mom had to call off an extra day of work but they didn't give her any trouble about it.
The staff at MSKCC are absolutely amazing! Everyone was so nice, from the doctors the whole way down to the cleaning crew. On the day that I left the hospital payed to provide us with a professional car to take us to the train station so I wouldn't have to ride the subway with fresh healing incisions in my side and run the risk of having to stand and support myself with that side while being jostled by other passengers. As I was being wheeled downstairs to catch our car my nurse Georgie's cellphone type thing that the staff carry to contact each other in the hospital, went off. It was another member of the staff who had missed saying goodbye to me on the floor and they knew she was with me so they called me on her phone to say goodbye! Georgie even made sure that Mom and I had blankets for on the train so we could sleep comfortably on the ride home. The staff at MSKCC don't just care for their patients on the professional level in my opinion; they care for the patients like they are family, and that makes a world of difference.
The nurses told us to let the ticket agent at the train station know that I had just been discharged from the hospital so that we could get on the train first without being pushed by other passengers there as well. It turned out that the people at the train station not only got us redcap service to the train but they also let us sit in the first class lounge where there are nice cushioned chairs instead of the hard benches in the standard waiting area.
Once we got on the train Mom and I got comfortable and promptly went to sleep under the nice warm blankets Georgie had provided. We slept most of the way back home without even changing the direction we faced when the train reached Philly.
As anyone who has seen me in recent months can testify I've been having problems with abdominal bloating since my tumor has started shrinking. It turns out that, for some reason, my abdomen keeps filling up with a fluid that is a combination of lymph fluid, proteins, and fats. In the course of a little over 6 weeks doctors drained 29 liters of fluid out of me in four drainings.
My mom actually took pictures at the second draining. This was 2 weeks to the day from my first draining where they took out 5 liters.
Before Draining
After Draining
Bottles of Drained Fluid
The bottles in that last picture contain 9.5 liters of fluid.
The fluid buildup, while not a health hazard, was a major comfort and quality of life issue. I was bloating up to the size of a woman 9 months pregnant in the course of only 2 weeks. The pain from my muscles and skin being stretched to their absolute limit was so bad that I was having to take the maximum amount of pain medication I was allowed per day just to be able to get out of bed and move. Sudden changes of direction would cause the fluid to slosh in my abdomen and cause nausea and pain. When I would lay down to sleep if I shifted how I was laying the fluid would all collect at one side or the other of my body. It just wasn't a comfortable or (and as far as pain management is concerned) healthy way to live.
So after talking to Dr. Schwartz about the issue we decided that the best option was for me to have this thing called a Tenkhof Catheter placed in my abdomen so that I could drain the fluid daily on my own at home and prevent these huge build ups. The only problem was that in order to have the procedure done at Memorial Sloan Kettering I would have to make an additional 2 trips to New York in the same month as my regular appointment. Since it costs us approximately $300 per trip and Mom only makes about $1,200 per month this was a bit of a problem financially. Additionally, if at some later time something were to go wrong with the catheter I would have to make another trip to NY to get it fixed since no hospital other than the one who placed it will work on a Tenkhof.
We decided to try and get the procedure done through Hershey Med so that we could avoid the extra $600 in travel expenses and have the hospital nearby if, heaven forbid, something were to go wrong with the catheter down the line. Mom called them to try and set it up before we were scheduled to go out to Ligonier for the bluegrass festival on father's day weekend some friends of hers had given us tickets to. The nurse we have to deal with at Hershey pretty much interrogated Mom as to why Dr. Schwartz wanted this procedure done. At one point the conversation went like this:
Nurse: And what does he hope to accomplish with this procedure?
Mom: Healing my Daughter!
Nurse: Oh. They think they can do that now can they?
Mom: Think!? They've been doing it for the past 6 months now! Otherwise [my Daughter] wouldn't be alive today! Something that your hospital couldn't do!
Nurse: Well, I'm not really familiar with this procedure so I'll have to do some research and get back to you about this.
Mom: How about you do your research by contacting her Doctor in NY and discussing it with him?!
So Mom gave her the number for Dr. Schwartz's office so they could talk. Days pass with no word from either hospital until it gets close to the weekend of the festival. Dr. Schwartz himself calls me and informs me that he has spoken with the doctor at Hershey and that in his professional opinion I should NOT get the procedure done at Hershey. According to him the doctor was "uppity" with him and then informed him that Hershey doesn't use Tenkhofs so they would be (to use his words) jury rigging a smaller catheter intended for the chest. He guaranteed me that if I went ahead with the procedure at Hershey the catheter would go bad in approximately 2 months and need to be replaced. Since this is the man who saved my life when three other hospitals (including Hershey) had pretty much told me to go home and die I listened to him. He assured me that I was in no danger from the buildup in my abdomen and that there was no rush to get this procedure done. He told me to go to the festival and have a good time; "You need a trip that isn't to a hospital or doctor for once. Go have a good time!"
Mom, Taffy, and I went to the festival that weekend and relaxed with good friends and good music. It was probably the best either of us had felt since I had been diagnosed back in December.
When we got home there was a message from Hershey trying to contact us about an appointment for a procedure we had scheduled for that week. The only problem was, we never scheduled any appointment with them for that week. They had gone ahead and scheduled something without our consent. It was already past their office hours when we got the message and they hadn't left a callback number in the message so we had to wait for them to call us about it again. They never did.
The appointments for the pre-procedure check and the procedure itself were made right after we got back from the festival. On June 26th I went up and had my testing done and got another 10.5 liters drained out of my abdomen. Everything was set and I went back to NY on the 30th to have the procedure. This trip was to be 2 days long since an overnight stay is required after the procedure so Mom had had to schedule the time off from work. I was the whole way to the procedure room and we were waiting to talk to Dr. Brody who would be doing the procedure and fill out the standard, obligatory consent paperwork when she sprung something on us. She had just gotten off the phone with Dr. Schwartz about my procedure and I now had the option of having a different procedure done.
The new option was to have this thing called a Denver Shunt put in instead of the Tenkhof Catheter. The Denver Shunt would, instead of draining the fluid out of my body, redirect it into my circulatory system. After going over my blood work Drs. Schwartz and Brody had realized that the amount of protein and fat I was losing by having the fluid drained out was beginning to have a negative effect on my body. There is no dietary way that I could replenish the amount of protein and fat I was losing and if we continued to drain fluid out it would only get worse. By redirecting the fluid into my circulatory system my body would be able to absorb the protein and fat it needed and the excess fluid would be converted into urine. There would be nothing external that would need constant upkeep and I would be able to live a more normal quality of life with the Denver Shunt than if I were to get the Tenkhof Catheter. The only upkeep I have to do with the Denver Shunt is in the morning when I get up and at night when I go to bed I have to pump it 20 times to make sure the filters stay clear. There is this bump under my skin where the pump rest on top of my ribs for stability and I lay on my side and press a soft spot in the pump with my finger. It doesn't even hurt!
Dr. Schwartz also wanted me to get my mediport removed because it was now quite apparent that I had no need for now, nor would I in the future. The Denver Shunt connects to the same artery(?) that the port does and while they can both be in place, it is very hard on the body to have it that way.
After some discussion Mom and I decided to have the Denver Shunt put in and the Mediport taken out. The procedure went quickly after that and everything was put in/ taken out with no problems.
My stay at the hospital was extended by a day because it was necessary to monitor my blood work for longer to make sure that a very rare issue that can arise with the Denver Shunt wasn't occurring. Mom had to call off an extra day of work but they didn't give her any trouble about it.
The staff at MSKCC are absolutely amazing! Everyone was so nice, from the doctors the whole way down to the cleaning crew. On the day that I left the hospital payed to provide us with a professional car to take us to the train station so I wouldn't have to ride the subway with fresh healing incisions in my side and run the risk of having to stand and support myself with that side while being jostled by other passengers. As I was being wheeled downstairs to catch our car my nurse Georgie's cellphone type thing that the staff carry to contact each other in the hospital, went off. It was another member of the staff who had missed saying goodbye to me on the floor and they knew she was with me so they called me on her phone to say goodbye! Georgie even made sure that Mom and I had blankets for on the train so we could sleep comfortably on the ride home. The staff at MSKCC don't just care for their patients on the professional level in my opinion; they care for the patients like they are family, and that makes a world of difference.
The nurses told us to let the ticket agent at the train station know that I had just been discharged from the hospital so that we could get on the train first without being pushed by other passengers there as well. It turned out that the people at the train station not only got us redcap service to the train but they also let us sit in the first class lounge where there are nice cushioned chairs instead of the hard benches in the standard waiting area.
Once we got on the train Mom and I got comfortable and promptly went to sleep under the nice warm blankets Georgie had provided. We slept most of the way back home without even changing the direction we faced when the train reached Philly.