Hi all. I'm sorry it has been so long, but things have been a bit up in the air for me lately. As you can see from the title, I am not at home, but I am Mayo Clinic in Minnesota. I was admitted to the hospital when I was still in Michigan nearly a month ago, but they were unable to do anything more to help me. We requested a transfer to University of Michigan, but they flat out refused to see me after seeing my records. So, the next request was to Mayo and thankfully they said yes. After a round of testing, they decided that surgery was going to be necessary. On Monday, I am scheduled to have surgery - a skin graft - to my abdomen, but they won't be repairing the fistula at this time. They say that I will have to come back in about a year to have that done. So, as long as they don't worry about the infection that I currently have, I will be having surgery on Monday around noon.
Sorry this is fairly short, but I am getting tired and should get back to my room. I'll try to update more later. If you really want info, just send me an email at SallyLovesSnow@sbcglobal.net and I will include you on the email list.
Sally
Saturday, August 25, 2007
Saturday, August 4, 2007
It's been a little while...
Hi there. Sorry I have been MIA for a bit. Things aren't going all that well around here for me and I have been reluctant to share because sometimes saying it outloud makes it seem more real than one wants to deal with.
As you know, I have been using the wound VAC on my abdominal wound for about 2 weeks now. Well, on Wednesday, we took off the VAC to find that I have developed a fistula in that area where the abdominal wall ruptured this winter. It isn't a large fistula, but it is a fistula, nonetheless. For those who are unfamiliar with fistulas, let me explain. I have an area of my abdominal wall in the wound bed that was thin due to a coughing spell when I was hospitalized for bronchitis this winter. We knew it was a thin area and the wound clinic has been trying to repair the area for several months with no success. The way the wound VAC works is that it is a sponge that is laid on top of the wound bed and then suction is applied to it to pull out drainage and promote healing of tissue. Because we knew the entire wound bed was thin, they placed a contact layer over the wound bed before applying the sponge so the suction would be less apt to create fistulas. Unfortunately, in this one small area the contact layer was not enough and a fistula has formed.
A enterocutaneous fistula is an opening between the intestine and the skin whereupon bowel contents leaks from the intestine out through this opening. So, when we removed the sponge on Wednesday, we were greeted by my bowel contents (i.e. crap) leaking out. As I said, this is a very small fistula which has not matured and really is not all that severe. The problem is that it is going to be difficult to get it to heal and not get any larger being that we have been trying to get this area to heal for months and that was without the additional complication of an actual fistula.
For right now, they are reinforcing the area with additional products and then have reapplied the VAC because the rest of the wound is looking really good. Like the nurse said, she would rather be dealing with a smaller hole, even if it is a more complicated hole. So, if we can get it to heal up a little more with the wound VAC and have a smaller surface area to treat, all the better.
What is frustrating to me is that I kind of feel like this is the beginning of a very long and trecherous road that I don't want to go down. I always feared that if I started developing fistulas that it was a sign that my body just couldn't keep up anymore. After having the problem with the fistula tracts a couple months ago that just came out of the middle of no where and then to have this happen, I don't know what to think. Is my body just wearing out?
The good news is that I feel like things are starting to come together in terms of having myself set in a financial sense. Now that I have been approved for disability, I have a little money coming in. My bankruptcy was filed last week and I anticipate that it will be discharged within the next couple weeks and then I will no longer be responsible for that debt. I ended up filing for $40,000 in medical debts. As much as I hate to think this way, if something were to happen to me, I am glad to say that my family would not be put in the horrible position of having to struggle to pay my debts or even having to deal with them. I have no debt beyond my student loans at this point and my life insurance would cover the cost of my last expenses. No matter how morbid it is, it is nice to know that you are set and your family will not have to carry the burden of your expense.
I am enjoying a quiet night at home tonight. I was going to go out to a movie this afternoon, but instead decided to get some chinese (I love subgum fried rice!!!) and rent a few movies. Right now, I am watching Capote. It's very interesting. I know very little about Capote and have never read "In Cold Blood" so I am intrigued by it. I am also working very diligently on my cross-stitch. I got the stuff back from Dimensions this week and they have sent me a new project to do for them. My problem right now is that they want me to fill out tax papers. I was under the impression that the money they sent you for doing the pre-production projects was a "gift" and so I have to find out how that is classified because I don't think I can earn any money without jeopardizing my SSDI. I only have 14 days to get the project done, so I am going to start on it tonight and if all else fails, I will just end up sending it back to them without completing it if they won't let me do it for free. I have to check with social security though because I just don't see how making approximately $100-150 a year from craft work should make a difference.
Anyway, I better get to it or I will be sitting here all night. I hope you all have a wonderful day!
Sally
As you know, I have been using the wound VAC on my abdominal wound for about 2 weeks now. Well, on Wednesday, we took off the VAC to find that I have developed a fistula in that area where the abdominal wall ruptured this winter. It isn't a large fistula, but it is a fistula, nonetheless. For those who are unfamiliar with fistulas, let me explain. I have an area of my abdominal wall in the wound bed that was thin due to a coughing spell when I was hospitalized for bronchitis this winter. We knew it was a thin area and the wound clinic has been trying to repair the area for several months with no success. The way the wound VAC works is that it is a sponge that is laid on top of the wound bed and then suction is applied to it to pull out drainage and promote healing of tissue. Because we knew the entire wound bed was thin, they placed a contact layer over the wound bed before applying the sponge so the suction would be less apt to create fistulas. Unfortunately, in this one small area the contact layer was not enough and a fistula has formed.
A enterocutaneous fistula is an opening between the intestine and the skin whereupon bowel contents leaks from the intestine out through this opening. So, when we removed the sponge on Wednesday, we were greeted by my bowel contents (i.e. crap) leaking out. As I said, this is a very small fistula which has not matured and really is not all that severe. The problem is that it is going to be difficult to get it to heal and not get any larger being that we have been trying to get this area to heal for months and that was without the additional complication of an actual fistula.
For right now, they are reinforcing the area with additional products and then have reapplied the VAC because the rest of the wound is looking really good. Like the nurse said, she would rather be dealing with a smaller hole, even if it is a more complicated hole. So, if we can get it to heal up a little more with the wound VAC and have a smaller surface area to treat, all the better.
What is frustrating to me is that I kind of feel like this is the beginning of a very long and trecherous road that I don't want to go down. I always feared that if I started developing fistulas that it was a sign that my body just couldn't keep up anymore. After having the problem with the fistula tracts a couple months ago that just came out of the middle of no where and then to have this happen, I don't know what to think. Is my body just wearing out?
The good news is that I feel like things are starting to come together in terms of having myself set in a financial sense. Now that I have been approved for disability, I have a little money coming in. My bankruptcy was filed last week and I anticipate that it will be discharged within the next couple weeks and then I will no longer be responsible for that debt. I ended up filing for $40,000 in medical debts. As much as I hate to think this way, if something were to happen to me, I am glad to say that my family would not be put in the horrible position of having to struggle to pay my debts or even having to deal with them. I have no debt beyond my student loans at this point and my life insurance would cover the cost of my last expenses. No matter how morbid it is, it is nice to know that you are set and your family will not have to carry the burden of your expense.
I am enjoying a quiet night at home tonight. I was going to go out to a movie this afternoon, but instead decided to get some chinese (I love subgum fried rice!!!) and rent a few movies. Right now, I am watching Capote. It's very interesting. I know very little about Capote and have never read "In Cold Blood" so I am intrigued by it. I am also working very diligently on my cross-stitch. I got the stuff back from Dimensions this week and they have sent me a new project to do for them. My problem right now is that they want me to fill out tax papers. I was under the impression that the money they sent you for doing the pre-production projects was a "gift" and so I have to find out how that is classified because I don't think I can earn any money without jeopardizing my SSDI. I only have 14 days to get the project done, so I am going to start on it tonight and if all else fails, I will just end up sending it back to them without completing it if they won't let me do it for free. I have to check with social security though because I just don't see how making approximately $100-150 a year from craft work should make a difference.
Anyway, I better get to it or I will be sitting here all night. I hope you all have a wonderful day!
Sally
Sunday, July 22, 2007
AMAZING week!
Hi there! This has been an amazing week. It started on Sunday when we left to go camping. We went to Gun Lake (only about 30 minutes from home). This was a good choice so if something happened we weren't too far from home. Being that I woke up on Friday morning to go to see my PCP and found that I had cellulitis again, close to home was a good choice for vacation. The good news was that I was seeing my PCP anyway, so we started ointment and antibiotics and it cleared up quickly with no complications.
Anyway, we went camping Sunday through Tuesday. It was Andrew's first camping experience. He had a wonderful time and can't wait to go again. When he got home, he informed Becky that he had to go to sleep so that he could get up and have breakfast at the campsite! I had a great time too. I got to read until my heart was content. I enjoyed just sitting in the great outdoors and experiencing nature while I was reading. We had great food and an amazing time with each other. Each night, we sat around the campfire mezmorized by the glow of the fire.
When we came back, I got a delightful call from a gentleman at Social Security. For the first 5 months of disability, you are not eligible for any money, which meant that I didn't start getting money until July. I had learned this information last week when I got the notification that I had been approved. Well, this gentleman was calling to tell me that I qualified for Social Security Income for those first 5 months and I would be getting a check for those 5 months! YEAH! MONEY!!!
Friday, I went to the Wound Clinic and we decided to try the Wound VAC. I had contemplated not doing it because the idea of complications such as fistulas in the bowel due to the suction scare the crap out of me, but Mary Beth was very convincing that she was taking every precaution to keep that from happening. It is a very quiet machine. It is basically silent, but it does occasionally make a sound like it is burping. It is a little heavy and does throw my back off when I am walking, which is making me a bit uncomfortable. It is also a little awkward to have the drainage tubing hanging out all the time where people can see the drainage. I didn't think that it would have much, but it is draining more than I had anticipated. Mary Beth said that we would know within the first few dressing changes if this was going to work or not. She is really just looking for some granulation tissue so that the Applegraf has something to attach to. We will see what happens, especially with the news listed below. It will complicate things a bit.
Yesterday, I checked my bank account and the social security income money was there and I was able to write mom a check to start my repayment of all the money she has loaned me and I was also able to invite her out for a nice dinner which I paid for. So, we went to Red Lobster and had shrimp and crab legs. It was very tasty and it was even more tasty knowing that I was not having to ask for money to pay for it.
Then when we got home, I went out and got the mail. I was nervous to find 2 envelopes from the state in the mail. The first envelope revealed that my food stamp money had been reduced from $155 to $113 a month. I thought, oh no, how am I supposed to do this??? Well, I opened the next envelope to find that the reason my food stamps had been reduced was because I had been approved for state disability assistance and am now receiving a cash benefit which was more than they reduced my food stamps. In addition to the cash benefit, I have also been approved for medicaid as of January 1, 2007. So, I will now be able to have all these places bill medicaid and I can also stop paying COBRA benefits as well. It looks like I am going to have to pay the COBRA bill for July because I haven't been able to get anything pre-approved by medicaid and I don't want to end up with a bunch of bills that I have to sit on for a year, but I will get everyone working on pre-approval for August so I can get rid of that bill.
So, this has been a great week. We had such a good time camping and then to end the week with the high note of getting all my disability approved and the medicaid situation finally approved. It is such a relief to know that I have insurance and that everything is approved. I am still in awe that I got my social security disabiltiy approved on the first try. It is a little disconcerting to know that my situation is so dire that they approved it so quickly, but I am trying not to focus on that. I am just looking at the positive side of this situation.
So, I am off to WalMart to get a couple things, including the new Harry Potter book. I am looking forward to getting that read and learning how Harry's life continues on. I am hoping to go see the movie some time this week, but it is a very busy week for me. I have to go to the Wound Clinic on Monday, Wednesday and Friday for dressing changes and then I also have an appointment on Thursday to see Dr. Borozan and then on Friday I have my IVIG infusion. Like I said, a very busy week. On Tuesday, I am hoping to catch up with my Aunt Sue and have breakfast with my sister as well as dinner with "the girls" on Monday evening. YIKES! I am tired already!
Anyway, hope you all have a great day! I think that I shall go take my movie back, go to WalMart and then maybe take myself out to dinner! Such fun!
Sally
Anyway, we went camping Sunday through Tuesday. It was Andrew's first camping experience. He had a wonderful time and can't wait to go again. When he got home, he informed Becky that he had to go to sleep so that he could get up and have breakfast at the campsite! I had a great time too. I got to read until my heart was content. I enjoyed just sitting in the great outdoors and experiencing nature while I was reading. We had great food and an amazing time with each other. Each night, we sat around the campfire mezmorized by the glow of the fire.
When we came back, I got a delightful call from a gentleman at Social Security. For the first 5 months of disability, you are not eligible for any money, which meant that I didn't start getting money until July. I had learned this information last week when I got the notification that I had been approved. Well, this gentleman was calling to tell me that I qualified for Social Security Income for those first 5 months and I would be getting a check for those 5 months! YEAH! MONEY!!!
Friday, I went to the Wound Clinic and we decided to try the Wound VAC. I had contemplated not doing it because the idea of complications such as fistulas in the bowel due to the suction scare the crap out of me, but Mary Beth was very convincing that she was taking every precaution to keep that from happening. It is a very quiet machine. It is basically silent, but it does occasionally make a sound like it is burping. It is a little heavy and does throw my back off when I am walking, which is making me a bit uncomfortable. It is also a little awkward to have the drainage tubing hanging out all the time where people can see the drainage. I didn't think that it would have much, but it is draining more than I had anticipated. Mary Beth said that we would know within the first few dressing changes if this was going to work or not. She is really just looking for some granulation tissue so that the Applegraf has something to attach to. We will see what happens, especially with the news listed below. It will complicate things a bit.
Yesterday, I checked my bank account and the social security income money was there and I was able to write mom a check to start my repayment of all the money she has loaned me and I was also able to invite her out for a nice dinner which I paid for. So, we went to Red Lobster and had shrimp and crab legs. It was very tasty and it was even more tasty knowing that I was not having to ask for money to pay for it.
Then when we got home, I went out and got the mail. I was nervous to find 2 envelopes from the state in the mail. The first envelope revealed that my food stamp money had been reduced from $155 to $113 a month. I thought, oh no, how am I supposed to do this??? Well, I opened the next envelope to find that the reason my food stamps had been reduced was because I had been approved for state disability assistance and am now receiving a cash benefit which was more than they reduced my food stamps. In addition to the cash benefit, I have also been approved for medicaid as of January 1, 2007. So, I will now be able to have all these places bill medicaid and I can also stop paying COBRA benefits as well. It looks like I am going to have to pay the COBRA bill for July because I haven't been able to get anything pre-approved by medicaid and I don't want to end up with a bunch of bills that I have to sit on for a year, but I will get everyone working on pre-approval for August so I can get rid of that bill.
So, this has been a great week. We had such a good time camping and then to end the week with the high note of getting all my disability approved and the medicaid situation finally approved. It is such a relief to know that I have insurance and that everything is approved. I am still in awe that I got my social security disabiltiy approved on the first try. It is a little disconcerting to know that my situation is so dire that they approved it so quickly, but I am trying not to focus on that. I am just looking at the positive side of this situation.
So, I am off to WalMart to get a couple things, including the new Harry Potter book. I am looking forward to getting that read and learning how Harry's life continues on. I am hoping to go see the movie some time this week, but it is a very busy week for me. I have to go to the Wound Clinic on Monday, Wednesday and Friday for dressing changes and then I also have an appointment on Thursday to see Dr. Borozan and then on Friday I have my IVIG infusion. Like I said, a very busy week. On Tuesday, I am hoping to catch up with my Aunt Sue and have breakfast with my sister as well as dinner with "the girls" on Monday evening. YIKES! I am tired already!
Anyway, hope you all have a great day! I think that I shall go take my movie back, go to WalMart and then maybe take myself out to dinner! Such fun!
Sally
Thursday, July 12, 2007
APPROVED!!!
Hi there! Amazing news! I just got my approval from Social Security Disability! I actually got approved on the first try and in only 5 months! This is unheard of to be approved on the first try. Everyone had warned me that I would be declined and have to appeal and had said that I should get a lawyer for the appeal because it is easier to get approved that way. I was concerned because I didn't know how I would pay for a lawyer. Well, now I don't have to even worry about it!
So, as of the second week of August, I will start getting money!!! It will be so nice to get a monthly income. I really appreciate mom loaning me money for all these months, but I am soooo thankful that I won't have to be asking for money anymore. It is so very degrading to have to ask for money when you are a grown woman. This will do amazing things for my self-esteem.
Hard as it is to believe, I have been approved for SSDI before I got approved for Medicaid! Hopefully I will get good news from the state soon and get my medicaid. I will also have to file my bankruptcy in the next couple weeks too because I don't want to take a chance on anyone garnishing my precious SSDI checks!
Hope you have a great day! Goodness knows that I am!
Sally
So, as of the second week of August, I will start getting money!!! It will be so nice to get a monthly income. I really appreciate mom loaning me money for all these months, but I am soooo thankful that I won't have to be asking for money anymore. It is so very degrading to have to ask for money when you are a grown woman. This will do amazing things for my self-esteem.
Hard as it is to believe, I have been approved for SSDI before I got approved for Medicaid! Hopefully I will get good news from the state soon and get my medicaid. I will also have to file my bankruptcy in the next couple weeks too because I don't want to take a chance on anyone garnishing my precious SSDI checks!
Hope you have a great day! Goodness knows that I am!
Sally
Quiet Thursday afternoon
Hello all. I am just having a quiet Thursday afternoon. I had planned to go see Harry Potter today, but changed my mind. My neck/shoulder is considerably more sore than I anticipated and so I decided that I would just stay home and relax today. I will go see the movie next week instead. Fortunately, this is one of those movies that I don't feel like I need to rush right out to see because I know how the story goes...no matter how many previews and interviews I see on TV about the movie, they can't spoil it because I have read the book and know the story. So, waiting until next week is no big deal. Besides, I would rather relax today so that I have the energy and strength for tomorrow.
I am very excited about tomorrow. I am picking Andrew up from school and we are going to see Ratatoille. I am so looking forward to taking him to the theater and seeing the movie and so is he. We had such a good day yesterday. There are many times that he really doesn't want much to do with me when we are together, especially if grandma is there. He generally will curl up with her over me and, I admit, sometimes it hurts my feelings a bit (I am human, you know) even though I know that he doesn't mean to do that. Yesterday though, he wanted me...he wanted to sit next to me at dinner and he wanted to sit with me when we got home, curled up in my lap and we read a few books together. He had a ton of energy last night though and was running around the living room in circles, did summersaults, was showing me his stunt falls, etc. He was so funny. I was so tired after the procedure and he was just running like his tail was on fire!
So, my plans for today are pretty minimal. I am going to tidy up the kitchen here in a minute and then I am going to go and cross-stitch for a bit. I'll likely take a nap too, just because I can!
Oh, Social Security called yesterday while I was gone and wanted to know when he could call me on Friday. So, I left him a message today that he could call me in the morning. It will be interesting to see what he has to offer. I am hoping that he is calling to tell me that they have sent my file in and we are just waiting for a response. I am hoping that he might even be calling to give me some good news!!! Wouldn't it be nice to hear some positive news? Wouldn't it be nice to hear that someone is going to give me some money finally??? I'll let you know what they have to offer after I find out.
Anyway, hope you all have a great day. I'm off to the kitchen!
Sally
I am very excited about tomorrow. I am picking Andrew up from school and we are going to see Ratatoille. I am so looking forward to taking him to the theater and seeing the movie and so is he. We had such a good day yesterday. There are many times that he really doesn't want much to do with me when we are together, especially if grandma is there. He generally will curl up with her over me and, I admit, sometimes it hurts my feelings a bit (I am human, you know) even though I know that he doesn't mean to do that. Yesterday though, he wanted me...he wanted to sit next to me at dinner and he wanted to sit with me when we got home, curled up in my lap and we read a few books together. He had a ton of energy last night though and was running around the living room in circles, did summersaults, was showing me his stunt falls, etc. He was so funny. I was so tired after the procedure and he was just running like his tail was on fire!
So, my plans for today are pretty minimal. I am going to tidy up the kitchen here in a minute and then I am going to go and cross-stitch for a bit. I'll likely take a nap too, just because I can!
Oh, Social Security called yesterday while I was gone and wanted to know when he could call me on Friday. So, I left him a message today that he could call me in the morning. It will be interesting to see what he has to offer. I am hoping that he is calling to tell me that they have sent my file in and we are just waiting for a response. I am hoping that he might even be calling to give me some good news!!! Wouldn't it be nice to hear some positive news? Wouldn't it be nice to hear that someone is going to give me some money finally??? I'll let you know what they have to offer after I find out.
Anyway, hope you all have a great day. I'm off to the kitchen!
Sally
Wednesday, July 11, 2007
I am the proud owner of a port-a-cath!
YAY! I had my port-a-cath placed today. For those that don't understand the concept of a port-a-cath, I will try to explain. It is a small port that is placed just under the skin in my upper chest just below my right collarbone. This is covered by skin and can be accessed by a needle. You can imagine that it is like when they access a regular IV site into that little rubber piece that dangles at the end of the IV line. They go through the skin and can draw blood, give medication, etc. without having to search around for a vein now because this port is connected directly to a vein at all times. This means that I will no longer have to have regular IV lines and they won't have to go searching for a vein each time I go in for my IVIG infusions or into the hospital for an admission! This should save me lots of poking, bruises and discomfort. Now you can likely understand why I have been looking forward to this for so long.
The procedure went well today with no complications. My arm/shoulder really hurts tonight. It feels like someone has been yanking on my arm and trying to shove their foot through my shoulder. I assume that I will be in less pain tomorrow and that by the weekend all should be fine.
Yesterday, I had the unpleasant experience of having my first acute pancreatitis attack. I was in so much pain it was unbelievable. It started around 4:30am and by 7am, I had all I could take and went upstairs in hopes of getting comfortable in a recliner. Mom saw me before she left and I burst into tears because I was in so much pain. I assured her that I would be fine and that if I wasn't, I would call Becky because she was off. So, mom went off to work with the promise from me that I would call if it got worse. I probably should have gone to the ER because my home pain meds weren't working in the slightest. I refrained from eating and did very little drinking all day and by the end of the night, it was a little better. I did have a little bowl of soup since I knew I wouldn't be able to eat today because of the procedure and that didn't seem to make things too much worse. It was a very uncomfortable night in bed, but I managed to get a little sleep and was feeling better this morning. I talked to my surgeon about it today and he said I was right in not eating and giving my pancreas a rest. He also agreed I probably should have gone in, but understood why I didn't. I was afraid that if I did, they would admit me and cancel my procedure for today and also that it would ruin our camping trip for the weekend. I will definitely admit that it scared the crap out of me. I was also hesitant to go in because I didn't want to hear that it was all back again. Nothing scares me more than the idea that my pancreas will try to eat me alive again. The GI doctor told me that it was inevitable that it will and now I live in fear that he is right. I know that I could not go through all that again - neither physically nor mentally/emotionally. I have already made the decision that if it happens again, they are to just let me go. I can't do it. It is too much for both me and my family to go through again. I literally live in fear of when it will happen. It is what wakes me in a cold sweat in the middle of the night. It is what pushes me to make the most of the time that I have with my family now - especially with Andrew - because I am so afraid that there will come a time in the not so distant future that I won't be around. I cherish the time I have with everyone now. It has made me appreciate my family so much more and all they do for me. I hate thinking that I won't be there for my sister when she needs me and that I may miss out on the important moments of Andrew's life as he gets older. It isn't fair that I should even have to think about those things.
Anyway, on a more cheerful note...I am planning to scrounge together $3 so I can go see the Harry Potter movie tomorrow. Then, Andrew and I are going to see Ratatoille on Friday. They needed me to pick him up from school on Friday, so I said I would pick him up after my doctor's appointment and we would go see the movie. He told me tonight that he didn't want to go, but then I told him that I really want to see it, but don't want to go alone...I need a date. So, he decided that he would take me to see it. How cute is that? After the movie, we will go back to his house to play until his parents come home.
Well, I am sore and tired, so I am off to bed. Hope you all have a great day!
Sally
The procedure went well today with no complications. My arm/shoulder really hurts tonight. It feels like someone has been yanking on my arm and trying to shove their foot through my shoulder. I assume that I will be in less pain tomorrow and that by the weekend all should be fine.
Yesterday, I had the unpleasant experience of having my first acute pancreatitis attack. I was in so much pain it was unbelievable. It started around 4:30am and by 7am, I had all I could take and went upstairs in hopes of getting comfortable in a recliner. Mom saw me before she left and I burst into tears because I was in so much pain. I assured her that I would be fine and that if I wasn't, I would call Becky because she was off. So, mom went off to work with the promise from me that I would call if it got worse. I probably should have gone to the ER because my home pain meds weren't working in the slightest. I refrained from eating and did very little drinking all day and by the end of the night, it was a little better. I did have a little bowl of soup since I knew I wouldn't be able to eat today because of the procedure and that didn't seem to make things too much worse. It was a very uncomfortable night in bed, but I managed to get a little sleep and was feeling better this morning. I talked to my surgeon about it today and he said I was right in not eating and giving my pancreas a rest. He also agreed I probably should have gone in, but understood why I didn't. I was afraid that if I did, they would admit me and cancel my procedure for today and also that it would ruin our camping trip for the weekend. I will definitely admit that it scared the crap out of me. I was also hesitant to go in because I didn't want to hear that it was all back again. Nothing scares me more than the idea that my pancreas will try to eat me alive again. The GI doctor told me that it was inevitable that it will and now I live in fear that he is right. I know that I could not go through all that again - neither physically nor mentally/emotionally. I have already made the decision that if it happens again, they are to just let me go. I can't do it. It is too much for both me and my family to go through again. I literally live in fear of when it will happen. It is what wakes me in a cold sweat in the middle of the night. It is what pushes me to make the most of the time that I have with my family now - especially with Andrew - because I am so afraid that there will come a time in the not so distant future that I won't be around. I cherish the time I have with everyone now. It has made me appreciate my family so much more and all they do for me. I hate thinking that I won't be there for my sister when she needs me and that I may miss out on the important moments of Andrew's life as he gets older. It isn't fair that I should even have to think about those things.
Anyway, on a more cheerful note...I am planning to scrounge together $3 so I can go see the Harry Potter movie tomorrow. Then, Andrew and I are going to see Ratatoille on Friday. They needed me to pick him up from school on Friday, so I said I would pick him up after my doctor's appointment and we would go see the movie. He told me tonight that he didn't want to go, but then I told him that I really want to see it, but don't want to go alone...I need a date. So, he decided that he would take me to see it. How cute is that? After the movie, we will go back to his house to play until his parents come home.
Well, I am sore and tired, so I am off to bed. Hope you all have a great day!
Sally
Friday, July 6, 2007
No more random poking!
YAY! I got a phone call this morning with the date of my port-a-cath insertion. It is going to be done on Wednesday, July 11 at 2:45pm. I am very excited because this will mean that there will not be any random poking at the end of the month when I go in for my infusion! I saw Dr. Borozan on Tuesday and he said that he had no problem doing the surgery and that my subclavian on the right is open and appears to be ready for the port.
In other news, we went to the fireworks on Wednesday night. This was Andrew's first fireworks exposure and he enjoyed it to begin with, but then decided he was scared. He didn't like the noise, but he sat very quietly on grandma's lap and waited until it was over. Before the fireworks, he was running around playing duck, duck, goose with us and just running around in circles for the sake of running! He is just so adorable!
In other news, we went to the fireworks on Wednesday night. This was Andrew's first fireworks exposure and he enjoyed it to begin with, but then decided he was scared. He didn't like the noise, but he sat very quietly on grandma's lap and waited until it was over. Before the fireworks, he was running around playing duck, duck, goose with us and just running around in circles for the sake of running! He is just so adorable!
Otherwise, things are about the same as usual. I will be babysitting tomorrow for the adorable little Andrew. I had planned to take him to see Ratatoille this week, but he went last week with his school friends. It was his first movie. I can just about see the 20 or so of them walking down the sidewalk to the theater and then all sitting in a row. So cute! It's just as well that he went then though because I won't be able to take him this week like I had planned because of the port insertion. So, I think that we will still go together, but it will be a couple weeks...unless we go tomorrow on a whim! He can't actually tell me what the movie was about, but he did say that part of it scared him. I don't think he was so much scared by the movie as by being in the dark without an adult to cuddle up with. So, hopefully he will enjoy it even more the second time around.
Healthwise, I am still struggling with abdominal pain since that weird event last week. I don't know what is going on, but it could stop any time now! Lungs are doing okay, a little better than last week, but still not great. The major changes in weather and all the heat with humidity doesn't help any! The skin tears are healing and I don't seem to be getting as many of them these days. I am hoping that is getting better and will not cause problems.
Well, I had better find some lunch. I have chicken defrosted and marinating for dinner, but lunch is still up in the air...perhaps a sandwich and chips again...
Sally
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