Here's a little update before my appointment tomorrow when I go back to the oncologist so he can check on how I've been doing since I left the hospital. Overall things are pretty good, with only a few complaints.
I feel like I am getting my strength back, which is a good feeling. I still have the two drains in my side. One of them does not seem to be working, which may be a good thing if it is draining on the inside like it is supposed to. I have been able to take a shower and brush my teeth regularly each day. Small pleasures, I know. It takes me a while - like an hour - but I am clean every day, which I really appreciate. I have also been able to take a few little walks outside and even do a little laundry. I can tell I have lost muscle, but I am forcing myself to eat every couple of hours to keep my strength up. I have been keeping some snacks close by my bed (thanks West End!), which helps because I don't have to move too much to eat.
Nights have not are not so good for me because I am not sleeping well. I get this burning pain in my back that keeps me up at night. And I really must be feeling better to even have this concern, but I have to leave my house tomorrow for the doctor's office and I have no idea what I can comfortably wear. I have these drains in my side with external bags and while I have lost weight, my belly is still distended. When they injected me with the dye in the hospital, they never could tell why my stomach distension wouldn't go down. Then they said maybe it will stay like this! I am very comfortable in my nightgown and robe, but I don't think I can go to the doctor's office wearing that!
I'll have more news after the appointment. Thank you so much for all your comments and support. It really means so much to my family and me.
5/26/09
5/23/09
There's No Place Like Home
It's good to be home! After a week in the hospital, I am really happy to be here with my family. I think the only thing I will miss about the hospital is the nifty bed. It's not too comfortable as far as beds go, but it is way easier for sitting up and laying down. All you have to do is push a button. Moving around is much harder in my own bed. Moving around in general is hard and I was surprised how tiring it was just riding home from the hospital.
My task for the next few days is to rest and eat. I am a little more jaundiced from being off the IV fluids. I am trying to keep drinking and eating - I need lots of protein. The problem is that food just doesn't taste good to me. I have to force myself to eat. Logan made me some scrambled eggs tonight and I had a half piece of toast and little bits of potato, yogurt, fruit and a nutritional shake.
My biliruben count hasn't come down. The oncologists here don't want to start me on treatment for cancer with my count so high. We have an appointment with a specialist in San Francisco on June 4 to get a second opinion. He may have some surgical options to try. Until then, I'm just resting at home.
Thank you all for your thoughts and prayers. To the West End teachers, thank you for your thoughtfulness for my family and me. We appreciate the nice basket of goodies and your kind thoughts.
My task for the next few days is to rest and eat. I am a little more jaundiced from being off the IV fluids. I am trying to keep drinking and eating - I need lots of protein. The problem is that food just doesn't taste good to me. I have to force myself to eat. Logan made me some scrambled eggs tonight and I had a half piece of toast and little bits of potato, yogurt, fruit and a nutritional shake.
My biliruben count hasn't come down. The oncologists here don't want to start me on treatment for cancer with my count so high. We have an appointment with a specialist in San Francisco on June 4 to get a second opinion. He may have some surgical options to try. Until then, I'm just resting at home.
Thank you all for your thoughts and prayers. To the West End teachers, thank you for your thoughtfulness for my family and me. We appreciate the nice basket of goodies and your kind thoughts.
5/22/09
Eating, Walking, and (maybe) Going Home
Things continue to go well here. My biliruben count has not changed much today, but I've been able to eat my first solid food in more than a week. I have been out walking the halls and they are weaning me off the IV meds. If I can eat solid food, get around, and take oral medication, they say I'm good to go home! I'll have the drains in, but the IV's out. If all continues to go well, I'll go home tomorrow. I just had meds and I'm going to sleep - but wanted to share a quick update.
5/21/09
Answer to Prayers
Now that the pancreatitis is gone, my next medical concern is my biliruben count. I have been really praying specifically for my count to come down so that I can start treatment. The doctor came in this morning, very surprised and happy to report that my count was down from 8.9 to 7. This was unexpected by everyone who wasn't praying for it. I believe this is a direct answer to our prayers. The doctor thought I had plateaued at 8.9 and still thinks it won't go down any more. The ideal count is a 2. I'm still praying for my count to go down and I appreciate all of you who are joining me in this - it's working!
I did have a little leakage on the outside of my right stent. Actually, it was more that just a little. We changed the dressing and then it continued to leak, even soaking a washcloth. The medical staff is not as concerned about this problem as I am, so maybe it's not such a big problem after all. But of course, they are not the ones leaking fluid from an incision. I can tell you with my bloated Grinch belly and my stent incisions, I am so ready for bikini season!
My sister Shelly came by tonight and said I needed to get out of bed. I got up and walked the halls with her for a bit. Even Shelly was surprised by my speedy pace. Of course, it's not like my brisk morning walks used to be, but everything's relative. It was good to get up and walk.
I can't say it enough - Thank you for your comments, your support, and your prayers. It is making a difference for me!
I did have a little leakage on the outside of my right stent. Actually, it was more that just a little. We changed the dressing and then it continued to leak, even soaking a washcloth. The medical staff is not as concerned about this problem as I am, so maybe it's not such a big problem after all. But of course, they are not the ones leaking fluid from an incision. I can tell you with my bloated Grinch belly and my stent incisions, I am so ready for bikini season!
My sister Shelly came by tonight and said I needed to get out of bed. I got up and walked the halls with her for a bit. Even Shelly was surprised by my speedy pace. Of course, it's not like my brisk morning walks used to be, but everything's relative. It was good to get up and walk.
I can't say it enough - Thank you for your comments, your support, and your prayers. It is making a difference for me!
5/20/09
Who is Billy Ruben?
The kids just got here so we can celebrate Hadley's birthday together - 16 years old! And officially driving as of today. I am still in the hospital. The good news is that the pancreatitis is completely gone. One specific improvement for me is that I can move from a clear liquid diet to a liquid diet. For me, that means I get to graduate from chicken broth (which was getting old for breakfast, lunch and dinner) to what I believe is pureed cream of broccoli soup. Plus I got some red and yellow thing they were passing off as jell-o, but I'm quite certain it's not.
As happy as we are about that improvement, my bilirubin count has not budged in 2 days. My count has dropped to an 8.9, which is half of what it was, but still not close to the level where I should be, which is around a 1. They are not sure why it hasn't dropped. My stomach is quite distended and they took an x-ray to see if they can tell what's happening, which they can't. My oncologist is sending my medical information to a liver cancer specialist at a San Francisco treatment center for a second opinion. This could lead to cancer treatments, but the first order of business is to get my bilirubin level to a normal range.
Right now, I'm not sure when I'll be released from the hospital. David has been staying here in my spacious room. He says he sleeps better on this hospital cot than he does at home when I'm here. They want to keep watching my bilirubin level to see if it comes down on its own. If it still doesn't get into the normal range, they may send me home with a home health nurse to check up on me. I know it will be a tough road to be monitoring all of this medical stuff at home, but I know it's a road I can travel.
I am so grateful for your support! Thank you to my visitors, and I'm sorry if I wasn't the best hostess; I would never tell you to go away if I was feeling well! I have to get a shot in my stomach each day to prevent blood clots. (All the patients on the cancer floor get them because we're not up and moving around.) While they were preparping to give me mine, I had a friend in who read me all your supportive comments and it took my mind off having that shot! I appreciate your love and prayers so much!
As happy as we are about that improvement, my bilirubin count has not budged in 2 days. My count has dropped to an 8.9, which is half of what it was, but still not close to the level where I should be, which is around a 1. They are not sure why it hasn't dropped. My stomach is quite distended and they took an x-ray to see if they can tell what's happening, which they can't. My oncologist is sending my medical information to a liver cancer specialist at a San Francisco treatment center for a second opinion. This could lead to cancer treatments, but the first order of business is to get my bilirubin level to a normal range.
Right now, I'm not sure when I'll be released from the hospital. David has been staying here in my spacious room. He says he sleeps better on this hospital cot than he does at home when I'm here. They want to keep watching my bilirubin level to see if it comes down on its own. If it still doesn't get into the normal range, they may send me home with a home health nurse to check up on me. I know it will be a tough road to be monitoring all of this medical stuff at home, but I know it's a road I can travel.
I am so grateful for your support! Thank you to my visitors, and I'm sorry if I wasn't the best hostess; I would never tell you to go away if I was feeling well! I have to get a shot in my stomach each day to prevent blood clots. (All the patients on the cancer floor get them because we're not up and moving around.) While they were preparping to give me mine, I had a friend in who read me all your supportive comments and it took my mind off having that shot! I appreciate your love and prayers so much!
5/18/09
A Room with a View
I've been in the hospital for just over two days now. I still have no release date, but I am in what must be the presidential suite of St. Mary's Hospital. It is an "extended stay" room, which has a table, a few comfy chairs, a microwave, and nice big windows overlooking the front of the building. The microwave must be for the visitors because I am not able to eat while my pancreas is inflammed. I have been having "IV nutrition," but I got to supplemement the IV fluids with an apple juice box today. I will need to be able to eat on my own before I can go home, so with one juice box under my belt, I'm well on my way!
My jaundice level is coming down, but it is still quite elevated. I also got a port put into my arm, so they will be able to easily inject medications when my treatments get started. At least if I am having all these complications, I am glad to be here where I am closely monitored. They prick my finger to check my blood levels every six hours. I don't feel like I'm sleeping too well, but the nurse said I was asleep when she checked on me in the night. Of course, it's not like sleeping in my own bed, but hopefully that will happen soon!
Thanks for the nice thoughts and prayers - I really appreciate it!
My jaundice level is coming down, but it is still quite elevated. I also got a port put into my arm, so they will be able to easily inject medications when my treatments get started. At least if I am having all these complications, I am glad to be here where I am closely monitored. They prick my finger to check my blood levels every six hours. I don't feel like I'm sleeping too well, but the nurse said I was asleep when she checked on me in the night. Of course, it's not like sleeping in my own bed, but hopefully that will happen soon!
Thanks for the nice thoughts and prayers - I really appreciate it!
5/16/09
Hospital Stay
It is Saturday night and I am in St. Mary's hospital tonight, for I'm not sure how long. I got the stent in on Friday and went home, but I started feeling really sick and vomiting. When I called the doctor, he said to come in to the ER, so David and I went back to the hospital this morning. After another CT scan, they said my pancreas is full of bile and now I have pancreatitis, which is imflammation of the pancreas. They said the stent was placed correctly, but it can happen from all the probing around to get it placed.
So now, the most pressing medical concern for me is to get my pancreas cleaned up from this infection. After that, the next thing that needs to happen is to drain the bile. If you want to know this disgusting fact, so far, they have drained three bags of bile out of me, so at least that's progress. Plus the doctor said I'm looking better, which I think means I'm not so yellow. After those two medical concerns are taken care of, then the doctor says I can start chemo.
So now, the most pressing medical concern for me is to get my pancreas cleaned up from this infection. After that, the next thing that needs to happen is to drain the bile. If you want to know this disgusting fact, so far, they have drained three bags of bile out of me, so at least that's progress. Plus the doctor said I'm looking better, which I think means I'm not so yellow. After those two medical concerns are taken care of, then the doctor says I can start chemo.
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