Thursday, September 4, 2014
Sunday, August 10, 2014
July 2014 projects
This card is my favorite for the month. I love cardinals. I used watercolor pencils to color the focal image.
These socks were part of a knit-a-long. This is a Hiya Hiya pattern and Knit Picks yarn.
This is from a Simon Says Stamp card kit from last fall. I really like the tree.
I used a wood shape to stamp the greeting.
Monday, May 26, 2014
Monday, March 31, 2014
Sunday, March 16, 2014
The Well
Living with IA is like falling in a deep well. You struggle to get a little farther up from rock bottom, and for some unknown reason you hit the bottom again. It is hardest mentally when you have had a little time to think you are almost at the top and then you fall right back to the bottom again.
IA could be compared to being stuck living as a character in a video game too. LOL Imagine seeing if you can stop your man's face from swelling, his body becoming covered in a rash, his turning blue, his tongue swelling so much it sticks out his mouth etc. Oh - and don't forget the lovely urinary incontinence, vomiting and diarrhea. Getting an Epipen would be getting a new life.
Scott was back in the hospital for 8 days in January. He had a perforated colon and abdominal abscess. They were able to get the infection cleared up and they are trying to get his Crohn's settled down so they can go in and remove the bad section of the colon. They will remove the sigmoid area this time. He had his ascending colon removed in 2004. He is now on three drugs for Crohn's, including Humira.
As always, we are very grateful to my family and our friends who helped us get through the trials of January. Anything from bringing me a peach tea to helping me carry things to the car, taking me to lunch, taking care of Carmen, money, and thoughts and prayers are so appreciated.
Since the last update, we have a new grandson. Finn Palmer Harris arrived on February 5th. He is very healthy and growing fast.
IA could be compared to being stuck living as a character in a video game too. LOL Imagine seeing if you can stop your man's face from swelling, his body becoming covered in a rash, his turning blue, his tongue swelling so much it sticks out his mouth etc. Oh - and don't forget the lovely urinary incontinence, vomiting and diarrhea. Getting an Epipen would be getting a new life.
Scott was back in the hospital for 8 days in January. He had a perforated colon and abdominal abscess. They were able to get the infection cleared up and they are trying to get his Crohn's settled down so they can go in and remove the bad section of the colon. They will remove the sigmoid area this time. He had his ascending colon removed in 2004. He is now on three drugs for Crohn's, including Humira.
As always, we are very grateful to my family and our friends who helped us get through the trials of January. Anything from bringing me a peach tea to helping me carry things to the car, taking me to lunch, taking care of Carmen, money, and thoughts and prayers are so appreciated.
Since the last update, we have a new grandson. Finn Palmer Harris arrived on February 5th. He is very healthy and growing fast.
I was able to spend two weeks spoiling the boys. The make me so happy. Being their "Mammae" is the best thing I have ever done in my life. Hearing Bentley's little voice saying, "Love you Mammae.", makes the darkest day bright.
Friday, August 23, 2013
Short Update
Sorry - I really haven't been able to write a thing earlier than today.
Scott is still sick but improving.
There was no cancer in my biopsy but also nothing to help my other health problems. I did OK post op for a couple of days then took a downturn. I finally came home yesterday and feel a touch better, but have a new problem that I am going to have to deal with soon.
We are resting and able to get ourselves food - at least food we can eat - which is very limited right now.
Thanks to all who were concerned and I am very sorry that I wasn't able to let you know sooner.
Scott is still sick but improving.
There was no cancer in my biopsy but also nothing to help my other health problems. I did OK post op for a couple of days then took a downturn. I finally came home yesterday and feel a touch better, but have a new problem that I am going to have to deal with soon.
We are resting and able to get ourselves food - at least food we can eat - which is very limited right now.
Thanks to all who were concerned and I am very sorry that I wasn't able to let you know sooner.
Wednesday, August 14, 2013
Tomorrow is the Day
At this time tomorrow, I will be getting ready to go to surgery. I am not as nervous as I thought I would be.
Scott has been in the hospital since August 3rd with a bad Crohn's disease flare-up. We thought he was going to end up with surgery but he made it. His small bowel was blocked from all the swelling. He is finally on a regular diet, and they are discontinuing his TPN (total parenteral nutrition) today. He had nothing by mouth for over a week. He may be discharged in time for my admission.
I was afraid Scott would have surgery and I wouldn't be able to care for him. He is determined to get well to care for me. We may disagree a lot but there are very few relationships as close as ours.
Bentley has finally given me a name. We tried to get him to say names we wanted but he just couldn't say them. Yesterday he started calling me Mammae (mam mae). It is wonderful for him to finally be saying "my name".
Scott has been in the hospital since August 3rd with a bad Crohn's disease flare-up. We thought he was going to end up with surgery but he made it. His small bowel was blocked from all the swelling. He is finally on a regular diet, and they are discontinuing his TPN (total parenteral nutrition) today. He had nothing by mouth for over a week. He may be discharged in time for my admission.
I was afraid Scott would have surgery and I wouldn't be able to care for him. He is determined to get well to care for me. We may disagree a lot but there are very few relationships as close as ours.
Bentley has finally given me a name. We tried to get him to say names we wanted but he just couldn't say them. Yesterday he started calling me Mammae (mam mae). It is wonderful for him to finally be saying "my name".
Sorry the video is sideways. I don't know how to flip it.
Tuesday, July 30, 2013
Finally scheduled
Dr. Lee said he now has no idea what we are looking at as far as the tumors go. If all three of the blood tests had came back positive we would have known they were carcinoid tumors, but two of the tests were normal. Only the Chromogratin A test was positive. On the paper work he wrote suspicious for metastatic liver cancer, or hepatocellular cancer or neuroendocrine tumors.
Dr. Lee said he did not feel that he could get everything out any way but taking the whole right lobe of my liver. The tumors are both near major vessels and it would be very hard to stop bleeding if he cut one. He was also afraid he would not get clear margins if he tried to just take the tumors.
If my fatty liver is too bad, he won't be able to do the surgery. He will just close me back up. My liver has to be fairly healthy for me to tolerate part of it being removed. Because of diabetes, high blood pressure and obesity I developed the fatty liver.
The surgery will take 5 - 6 hours. I will be in ICU for at least one day. I will be in the hospital for 2 weeks. I will have an arterial line in my arm and a central line in my neck.. I will be given steroids before and during my surgery, and also a drug to help prevent problems if it is neuroendocrine tumors. They secrete a substance that causes anaphylaxis. (This is what we are hoping for the tumors to be so that I will not have anaphylaxis anymore.)
I will lose a lot of weight. I wouldn't recommend this as a way to lose weight, but that is OK. Dr. Lee says that I will be malnourished because I won't have an appetite and my liver will pull all the nutrients from my body to heal itself. I will have to have phosphorus IV because the bone marrow pulls it from my body to make new liver cells.
I have waited so long to get this scheduled that it is a relief even though this is the hardest surgery option we talked about. I chose to go ahead and have the whole lobe removed because Dr. Lee said that the tumors are in areas that are impossible to biopsy with needles and are not really accessible with a laproscope. He also said with liver frozen section biopsies, they are only 20-30% accurate. He has had patients that the frozen sections were said to be benign and then when the pathology report came back in 3 - 4 days, it was cancer. He also has had them say it was a cancerous tumor and then come back benign. That was too much of a margin of error to suit me. I don't want to go through having the biopsy and then having to go back in to surgery in a few days. .
Dr. Lee gave Scott paper work to be with me for 4 weeks. He is out of leave time, so human resources will be asking ASU employees to donate time for me once again. I am always amazed at how generous people have been. It is scary to think I will need him for 4 weeks. I only had someone with me 24/7 for 2 weeks when I broke my leg.
People always ask what they can do for us. Our friend Bart has already volunteered to do the yard work while I am in the hospital. Casey usually keeps Carmen, but if she can't we will need a dog sitter. Carmen can't stay alone and just have someone feed her anymore - she is a little old woman now and gets very upset when she is left alone. We can use help cleaning. I will need foods that will tempt me to eat after surgery that are very nutritious. I always prefer cake over steak, but will need to eat something that will help my body heal. I may need someone to check in on me after Scott goes back to work.
My insurance has to approve this surgery. I have had terrible experiences trying to get things approved, but hopefully I won't have to jump through hoops to have this surgery.
I am waiting for my breakdown. Every time I get bad news I handle it very well for hours to days, but then breakdown and have a pity party festival. If I call someone crying later, you know why. I think I look at this as a nurse, but then it dawns on me that I am the patient. This is happening to me. I know this is routine stuff to Dr. Lee. He does this everyday and it is just as routine as washing dishes. I trust him completely.
My surgery is scheduled for August 15th. I have 16 days to get everything I want to do before surgery done.
As far as prayers go, pray for my family and I to have strength to get through this and accept whatever the diagnosis is. Pray for all of our needs to be met. I don't believe in asking for this to be benign or a certain type of tumor. It is what it is supposed to be. I will do what I have to do.
Dr. Lee said he did not feel that he could get everything out any way but taking the whole right lobe of my liver. The tumors are both near major vessels and it would be very hard to stop bleeding if he cut one. He was also afraid he would not get clear margins if he tried to just take the tumors.
If my fatty liver is too bad, he won't be able to do the surgery. He will just close me back up. My liver has to be fairly healthy for me to tolerate part of it being removed. Because of diabetes, high blood pressure and obesity I developed the fatty liver.
The surgery will take 5 - 6 hours. I will be in ICU for at least one day. I will be in the hospital for 2 weeks. I will have an arterial line in my arm and a central line in my neck.. I will be given steroids before and during my surgery, and also a drug to help prevent problems if it is neuroendocrine tumors. They secrete a substance that causes anaphylaxis. (This is what we are hoping for the tumors to be so that I will not have anaphylaxis anymore.)
I will lose a lot of weight. I wouldn't recommend this as a way to lose weight, but that is OK. Dr. Lee says that I will be malnourished because I won't have an appetite and my liver will pull all the nutrients from my body to heal itself. I will have to have phosphorus IV because the bone marrow pulls it from my body to make new liver cells.
I have waited so long to get this scheduled that it is a relief even though this is the hardest surgery option we talked about. I chose to go ahead and have the whole lobe removed because Dr. Lee said that the tumors are in areas that are impossible to biopsy with needles and are not really accessible with a laproscope. He also said with liver frozen section biopsies, they are only 20-30% accurate. He has had patients that the frozen sections were said to be benign and then when the pathology report came back in 3 - 4 days, it was cancer. He also has had them say it was a cancerous tumor and then come back benign. That was too much of a margin of error to suit me. I don't want to go through having the biopsy and then having to go back in to surgery in a few days. .
Dr. Lee gave Scott paper work to be with me for 4 weeks. He is out of leave time, so human resources will be asking ASU employees to donate time for me once again. I am always amazed at how generous people have been. It is scary to think I will need him for 4 weeks. I only had someone with me 24/7 for 2 weeks when I broke my leg.
People always ask what they can do for us. Our friend Bart has already volunteered to do the yard work while I am in the hospital. Casey usually keeps Carmen, but if she can't we will need a dog sitter. Carmen can't stay alone and just have someone feed her anymore - she is a little old woman now and gets very upset when she is left alone. We can use help cleaning. I will need foods that will tempt me to eat after surgery that are very nutritious. I always prefer cake over steak, but will need to eat something that will help my body heal. I may need someone to check in on me after Scott goes back to work.
My insurance has to approve this surgery. I have had terrible experiences trying to get things approved, but hopefully I won't have to jump through hoops to have this surgery.
I am waiting for my breakdown. Every time I get bad news I handle it very well for hours to days, but then breakdown and have a pity party festival. If I call someone crying later, you know why. I think I look at this as a nurse, but then it dawns on me that I am the patient. This is happening to me. I know this is routine stuff to Dr. Lee. He does this everyday and it is just as routine as washing dishes. I trust him completely.
My surgery is scheduled for August 15th. I have 16 days to get everything I want to do before surgery done.
As far as prayers go, pray for my family and I to have strength to get through this and accept whatever the diagnosis is. Pray for all of our needs to be met. I don't believe in asking for this to be benign or a certain type of tumor. It is what it is supposed to be. I will do what I have to do.
Friday, July 26, 2013
Octreotide Scan denied
Dr. Lee called my insurance company himself and they still won't pay for my scan. They told him after the biopsy was back they would pay if it is carcinoid tumors.
If I do get a pathology report saying I have carcinoid tumors, I will have to have another surgery. This is going to cost the insurance company more money and put my body through more trauma.
I do understand them denying the scan. Because all three tests were not positive, they want to wait and see. Unless you know me, you don't know how sick I am.
If this isn't carcinoid tumors, the surgery won't cure my anaphylaxis. There is about .oo1% chance that they are hydatid cysts. If the tumors turn out to be something other than these two, they are an additional problem.
I will take one day at a time. I desperately want this surgery to cure everything. I really don't know how much more my body can stand.
If I do get a pathology report saying I have carcinoid tumors, I will have to have another surgery. This is going to cost the insurance company more money and put my body through more trauma.
I do understand them denying the scan. Because all three tests were not positive, they want to wait and see. Unless you know me, you don't know how sick I am.
If this isn't carcinoid tumors, the surgery won't cure my anaphylaxis. There is about .oo1% chance that they are hydatid cysts. If the tumors turn out to be something other than these two, they are an additional problem.
I will take one day at a time. I desperately want this surgery to cure everything. I really don't know how much more my body can stand.
Wednesday, July 24, 2013
Gossip
I really hate gossip. Even well meant comments are gossip. I really hate it when you ask people not to tell things and they do anyway and say "She doesn't want people to know," If you say that you have told, and if that person tells it to a couple of people, eventually everyone knows about it. The "gossip" everyone is talking about is me. I didn't want people running around saying that I have cancer, which is exactly what they are doing. We don't know 100% what I have.
Enough ranting!
In April my doctor ordered a liver ultrasound because of tenderness and enlargement. The ultrasound showed 2 spots in my liver. It was possible that these were hydatid cysts, which is a parasite which causes anaphylaxis.
A CT scan was ordered, and then an MRI. The first MRI was done without contrast, so I had to go back for another with contrast. I have two masses in the right lobe of my liver. They are not hydatid cysts or regular cysts. Several radiologists and surgeons have reviewed my films. The tumors didn't grow much between the CT and MRI. The docs say that the tumors have to come out. We can't wait and see what happens. (It seems like we are doing that anyway.)
Multiple tumor maker tests were done and my Chromogratin A came back 5 times normal. This test is for carcinoid tumors.
The doctors think I have carcinoid tumors in my liver, but of course, nothing is certain until a pathologist looks at them after they are removed. Carcinoid tumors never start in the liver; they metastasize (spread) from elsewhere in the body.
I am trying to get an Octreotide scan approved by my insurance. This is a head to toe scan looking for the primary tumor. I will be given Octrotide with a radioactive isotope which will bind to the outer lining of a carcinoid tumor. The scan was to have started on Monday. The insurance wanted two additional lab tests done. I had those done on Thursday morning, but the results of one of the tests is still not back. They have sent my case to the medical director of the insurance company to try to get approval without the test results.
The importance of this scan is to find the primary tumor. If they can find it, it will need to be removed to prevent a recurrence. My hepatic surgeon wants to avoid me having more than one surgery due to my other health issues, so we are delaying the liver surgery hoping that we can get all of the tumors out in one surgery.
The masses cannot be biopsied by needle because one would require going through my lung, and the other cannot be reached by a needle. A needle biopsy can also spread abnormal cells when the needle is pulled out through healthy tissue.
The silver lining is that carcinoid tumors in the liver cause anaphylaxis in some people. If this is what I have, and it is removed, I hopefully won't have anaphylaxis anymore. This disease is called carcinoid syndrome.
Obviously, I am very anxious to get this done. The ultrasound was April 29th, and I am still trying to get this issue resolved. Patience is not my virtue.
Best case scenario with the surgery is that it will be done laproscopically. There will be 3 or 4 small incisions for the scope and instruments, and one incision big enough for my surgeons hand. He will try to get the tumors out this way. If this goes well I will be in the hospital for a couple of days. He will not know for sure this will work until he is in there.
Worst case scenario is that I will have to have an incision down the middle of my abdomen. The surgeon says sometimes it is better for the patient to just remove half of the liver. There is less blood loss than trying to carve tumors out sometimes.
The risks for me are the wounds not healing, and the possibility of having a carcinoid crisis or anaphylaxis during surgery. Even though I am much stronger than a year ago, I am still not even close to healthy. I continue to have anaphylaxis on average once a week. Diabetes, high blood pressure and obesity make it harder for the incisions to heal.
I asked what I should be doing to prepare my body for the surgery, and Dr. Lee said eat. He said I may become malnourished after surgery because my liver will pull all of my nutrients trying to heal itself. Eating is not a problem for me as long as I have my multiple tummy meds on board.
Either way I will have a rough couple of weeks, but it will be well worth the pain to get rid of the tumors.
Since lots of people already know, feel free to tell the world. I am at peace with whatever it is. If you pray, ask that my scan be done as soon as possible. Until it is done the surgeon does not know the best approach to take with the surgery.
I will update the blog when I have new information so that you know what is really going on.
The grand babies are doing well. The newest is already giving Casey a belly. He is due February 7th. Bentley is doing home school preschool. He learns more and more. I am amazed every time I see him, Evan is doing well,
Daddy is feeding Bentley watermelon. Bentley hates it. He said yuck!
Enough ranting!
In April my doctor ordered a liver ultrasound because of tenderness and enlargement. The ultrasound showed 2 spots in my liver. It was possible that these were hydatid cysts, which is a parasite which causes anaphylaxis.
A CT scan was ordered, and then an MRI. The first MRI was done without contrast, so I had to go back for another with contrast. I have two masses in the right lobe of my liver. They are not hydatid cysts or regular cysts. Several radiologists and surgeons have reviewed my films. The tumors didn't grow much between the CT and MRI. The docs say that the tumors have to come out. We can't wait and see what happens. (It seems like we are doing that anyway.)
Multiple tumor maker tests were done and my Chromogratin A came back 5 times normal. This test is for carcinoid tumors.
The doctors think I have carcinoid tumors in my liver, but of course, nothing is certain until a pathologist looks at them after they are removed. Carcinoid tumors never start in the liver; they metastasize (spread) from elsewhere in the body.
I am trying to get an Octreotide scan approved by my insurance. This is a head to toe scan looking for the primary tumor. I will be given Octrotide with a radioactive isotope which will bind to the outer lining of a carcinoid tumor. The scan was to have started on Monday. The insurance wanted two additional lab tests done. I had those done on Thursday morning, but the results of one of the tests is still not back. They have sent my case to the medical director of the insurance company to try to get approval without the test results.
The importance of this scan is to find the primary tumor. If they can find it, it will need to be removed to prevent a recurrence. My hepatic surgeon wants to avoid me having more than one surgery due to my other health issues, so we are delaying the liver surgery hoping that we can get all of the tumors out in one surgery.
The masses cannot be biopsied by needle because one would require going through my lung, and the other cannot be reached by a needle. A needle biopsy can also spread abnormal cells when the needle is pulled out through healthy tissue.
The silver lining is that carcinoid tumors in the liver cause anaphylaxis in some people. If this is what I have, and it is removed, I hopefully won't have anaphylaxis anymore. This disease is called carcinoid syndrome.
Obviously, I am very anxious to get this done. The ultrasound was April 29th, and I am still trying to get this issue resolved. Patience is not my virtue.
Best case scenario with the surgery is that it will be done laproscopically. There will be 3 or 4 small incisions for the scope and instruments, and one incision big enough for my surgeons hand. He will try to get the tumors out this way. If this goes well I will be in the hospital for a couple of days. He will not know for sure this will work until he is in there.
Worst case scenario is that I will have to have an incision down the middle of my abdomen. The surgeon says sometimes it is better for the patient to just remove half of the liver. There is less blood loss than trying to carve tumors out sometimes.
The risks for me are the wounds not healing, and the possibility of having a carcinoid crisis or anaphylaxis during surgery. Even though I am much stronger than a year ago, I am still not even close to healthy. I continue to have anaphylaxis on average once a week. Diabetes, high blood pressure and obesity make it harder for the incisions to heal.
I asked what I should be doing to prepare my body for the surgery, and Dr. Lee said eat. He said I may become malnourished after surgery because my liver will pull all of my nutrients trying to heal itself. Eating is not a problem for me as long as I have my multiple tummy meds on board.
Either way I will have a rough couple of weeks, but it will be well worth the pain to get rid of the tumors.
Since lots of people already know, feel free to tell the world. I am at peace with whatever it is. If you pray, ask that my scan be done as soon as possible. Until it is done the surgeon does not know the best approach to take with the surgery.
I will update the blog when I have new information so that you know what is really going on.
The grand babies are doing well. The newest is already giving Casey a belly. He is due February 7th. Bentley is doing home school preschool. He learns more and more. I am amazed every time I see him, Evan is doing well,
Evan is sleepy.
This is little _________________________ Harris. I am calling him Rasheed. We don't know the sex of the baby yet, but we are all saying he.
Thursday, June 20, 2013
Cards
Here are some cards I have been making. Some are for certain people, and some are just stocking up while I can.
For Bentley - his birthday is Sunday.
Love purple and butterflies.
Love this hot air balloon with bears in the basket.
A one layer card using white ink. This was fun!
For Kristen and Evan. I made this using Cricut Craft Room to weld shapes to make a shaped card. The face is a Peachy Keen stamp.
I watercolor painted the flower. I had never done grown up water color and it is fun. I am also learning to paint free hand with them.
A Cricut chicken.
More watercolor.
Cricut and Stickles.
Cricut cut Thank You.
I am pushing to do more, knowing that a crash is coming. It always does. That isn't being negative; it is being real.
I am pushing to do more, knowing that a crash is coming. It always does. That isn't being negative; it is being real.
Monday, May 20, 2013
Catching Up
Wow - Lots has happened since my last post.
Scott was in the hospital for a week for an abscess in his colon. He is fine now.
We had to have new sewer lines put in - all the way from the house to the street. Everything is back to normal minus grass in the front.
I am having more good days than bad. I have been able to do a little crafting and have pretty much been keeping the dishes done for Scott. I have came so far!
I am in bird watching heaven. My cardinals have stayed for the summer. I think they may have a nest in the forsythia out front. I hope to have some good pictures soon.
I have finished 20 books for the year. 32 more to meet my goal.
I will post some pictures of my crafts soon.
Scott was in the hospital for a week for an abscess in his colon. He is fine now.
We had to have new sewer lines put in - all the way from the house to the street. Everything is back to normal minus grass in the front.
I am having more good days than bad. I have been able to do a little crafting and have pretty much been keeping the dishes done for Scott. I have came so far!
I am in bird watching heaven. My cardinals have stayed for the summer. I think they may have a nest in the forsythia out front. I hope to have some good pictures soon.
I have finished 20 books for the year. 32 more to meet my goal.
I will post some pictures of my crafts soon.
Monday, April 8, 2013
The Flu...
...has struck at our house. Scott is terribly sick. His doctor called in Tamiflu for him, and also a prescription for me in case I get it. Scott is miserable. He shakes so badly when he has chills and isn't able to keep down solid food.
Book 11 was Lord John and the Hellfire Club. I am not enjoying the Lord John novels as much as the Outlander series. I am almost finished with book 12, Lord John and the Private Matter. The Lord John books have a bit of humor in them.
Book 11 was Lord John and the Hellfire Club. I am not enjoying the Lord John novels as much as the Outlander series. I am almost finished with book 12, Lord John and the Private Matter. The Lord John books have a bit of humor in them.
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