I have been around the block a bit! Since the middle of November when the cancer reoccurance scare began, I have had 6 surgeries and PET/CT, MRI, CT scans and xrays. I have had blood test, tissue tests and serum tests. Well I am pleased and very happy to announce that the doctor believes it was a false alarm!!!! I had my drain removed last week and things are really on the up. I am still quite tired and I have to work on my strength, but things look good so far. I will be back to the every 3 month scan to monitor the situation. I still cant believe it. I was so convinced I was going to die. I still might, but not too soon I hope! Only about 15% of us remain cancer free after 3 years (the number doesnt really drop too much after that!) so I have another 22 months to go before I really let my guard down. But I will continue to enjoy myseld and bask in life. Hans has been really great throughout this and I cannot imagine what it would have been like without his support.
I am back in my Swedish class for 3 hours everyday. Hopefully I can get to the point where I am not so nervous speaking Swedish. The next chance to take the national test will be in June and I am determined to take it then so I can move up to the next level which is for professional people. I will need to pass at least two more national tests if I want to work in a museumm or university.
Hans and I bought a lovely little 2004 Nissan Micra, bright red. It is too cute and has a happy little design. It is perfect for us and the cat and is small enough that even Hans can parallel park it.
We are hopefully getting another cat at the end of summer. My sister just picked up a stray and brought it home. Apparently it is very friendly and social despite living in a cat colony. My mom had it neutered, vaccinated, and microchipped and the paperwork for its transatlantic move has started. I know it is crazy to move a stray cat from the US to Sweden,but I never do anything the way I should. He is beautiful and I will try to post a picture of him soon.
Friday, March 28, 2008
Monday, January 21, 2008
I like hospitals
Sorry for not posting. I have been in and out of the hospitals for a bit. My external drain is causing problems, but I feel that for now it is sorted out.
Doctors are still not sure if the cancer is back. I have had CT, MRI, PET scans, swabs taken of the bile duct and bloodwork. Everything comes back with mixed results and 2 interpretations. Liver specialists in NC, Scotland and Sweden are all stumped as what is going on. I do have to be difficult dont I?
I have met with the liver team in Gothenburg and we had a wonderful discussion. Bad news is that one of my lymph nodes doesnt look normal, which could be a result of anything. Anyway, Dr. Rizell was great. I may be back on the transplant list, but he wants more tests and information. I will head back to Gothanburg soon for a tissue sample of the bile duct and possibly of the lymph node as well. He seemed more interested in the bile duct. I asked him about oncologists as I completely hate and do not trust mine and he was all about getting me a new one. I told him I am 33 and dont want someone to sit around and follow statistics because 1) the statiscts arent that good and 2) there are no statistics that are relevant to a 33 yr old who had a liver resection. He agreed and said that he would want to go experimental on me. Go ahead and do the standard chemos, but use "blockers" and other things that appear to be helpful (even if it is only 5%) in other cancers. I have found the doctor what will fight the fight with me and all I can say is it feels wonderful. The only way I can describe it is like when I met Professor Garden in Edinburgh (the surgon who removed the 1st tumor). I felt so comfortable and I knew that everything that could be done was going to be done...complete trust. I feel that way about Dr. Rizell.
Prof. Garden has emailed me about the scans and reports I sent him. He says that there is evidence there had been a stone, but the area is still worrying. I asked if he thought he could remove the tumor and he avoided the question (as did Dr. Rizell!-they are frustratingly good at it) The interesting comment he made was that twice he has gone in for a second surgery. Once he could do nothing because the cancer had spread far beyond what the imaging had shown. Once he did nothing because it wasnt cancer at all. Even the damn anecdotes show 2 possible outcomes!
Besides from the whole cancer thing, I am trying to live my life as normally as possible. Hans and I are looking to purchase a newer car and so we have been out test driving. Almost anything is better than our 1984 Opel Asconda. I am also progressing in my Swedish class. I missed my test twice because of being in the hospital. The third time I signed up to take the test, I got sick again and was back in the hospital. Luckily, my doctor gave me a two hour pass so I could take a taxi to school and sit the exam. Everyone was laughing at me for doing it, but I am so happy as I passed with 89% and am now in the higher level class. It all worked out which is great.
Doctors are still not sure if the cancer is back. I have had CT, MRI, PET scans, swabs taken of the bile duct and bloodwork. Everything comes back with mixed results and 2 interpretations. Liver specialists in NC, Scotland and Sweden are all stumped as what is going on. I do have to be difficult dont I?
I have met with the liver team in Gothenburg and we had a wonderful discussion. Bad news is that one of my lymph nodes doesnt look normal, which could be a result of anything. Anyway, Dr. Rizell was great. I may be back on the transplant list, but he wants more tests and information. I will head back to Gothanburg soon for a tissue sample of the bile duct and possibly of the lymph node as well. He seemed more interested in the bile duct. I asked him about oncologists as I completely hate and do not trust mine and he was all about getting me a new one. I told him I am 33 and dont want someone to sit around and follow statistics because 1) the statiscts arent that good and 2) there are no statistics that are relevant to a 33 yr old who had a liver resection. He agreed and said that he would want to go experimental on me. Go ahead and do the standard chemos, but use "blockers" and other things that appear to be helpful (even if it is only 5%) in other cancers. I have found the doctor what will fight the fight with me and all I can say is it feels wonderful. The only way I can describe it is like when I met Professor Garden in Edinburgh (the surgon who removed the 1st tumor). I felt so comfortable and I knew that everything that could be done was going to be done...complete trust. I feel that way about Dr. Rizell.
Prof. Garden has emailed me about the scans and reports I sent him. He says that there is evidence there had been a stone, but the area is still worrying. I asked if he thought he could remove the tumor and he avoided the question (as did Dr. Rizell!-they are frustratingly good at it) The interesting comment he made was that twice he has gone in for a second surgery. Once he could do nothing because the cancer had spread far beyond what the imaging had shown. Once he did nothing because it wasnt cancer at all. Even the damn anecdotes show 2 possible outcomes!
Besides from the whole cancer thing, I am trying to live my life as normally as possible. Hans and I are looking to purchase a newer car and so we have been out test driving. Almost anything is better than our 1984 Opel Asconda. I am also progressing in my Swedish class. I missed my test twice because of being in the hospital. The third time I signed up to take the test, I got sick again and was back in the hospital. Luckily, my doctor gave me a two hour pass so I could take a taxi to school and sit the exam. Everyone was laughing at me for doing it, but I am so happy as I passed with 89% and am now in the higher level class. It all worked out which is great.
Friday, December 28, 2007
An inspiration
When Hans and I were on our honeymoon this summer in Greece, we came across a very old church in the middle of nowhere. It was being somewhat restored and beautiful icons and candles where still housed inside (along with a bag of human bones!) Outside, there was this magnificant olive tree. It was so old and you could see that it had been cut down, split, and sick throughout its life. Yet, it still lived and thrived-even continued to produce olives. I loved this tree. I see hope in this tree. I hope, like the tree, no matter what gets thrown at me, I continue to live and thrive and show my wounds and scars with such grace.
Typical Day
I spent a slow day at home for the most part. Hans called me and invited me for a lunch date. Fixed my hair, slapped on makeup and headed into town for a very nice lunch at a small local place. I did a little shopping, but 50% off is just not good enough for this Jurgens girl. So, I will wait a couple of weeks and pop back in the stores again.
I had my drain flushed at the regular doctors office instead of the special one opened over the holidays. The nurse was appalled that the bandage had not been changed since the drain was put in 10 days ago. I really didnt think about it, but she is insistant that everytime I go in to have the drain flushed, the bandage should be changed. Will keep that in mind. The drain is still a little uncomfortable, more so today since she really had to work to get the old bandage off. I have a small pain in my liver as well. She says not to worry, it is normal. I have no infection and everything else looks good in relation to the drain. Hopefully my scans will come back negative and the drain will be removed.
Keep me in your thought and prayers. I am still hoping for NO cancer.
I had my drain flushed at the regular doctors office instead of the special one opened over the holidays. The nurse was appalled that the bandage had not been changed since the drain was put in 10 days ago. I really didnt think about it, but she is insistant that everytime I go in to have the drain flushed, the bandage should be changed. Will keep that in mind. The drain is still a little uncomfortable, more so today since she really had to work to get the old bandage off. I have a small pain in my liver as well. She says not to worry, it is normal. I have no infection and everything else looks good in relation to the drain. Hopefully my scans will come back negative and the drain will be removed.
Keep me in your thought and prayers. I am still hoping for NO cancer.
Tuesday, December 25, 2007
Merry Christmas
I had a wonderful day yesterday. My mother in law, Åsa, picked me up and took me to the hospital to have my drain flushed. No biggie. Then we went back to her house (after picking up the cat-she deserves Christmas too!). In Sweden, Christmas is celebrated on the 24th. So we started to prepare the house for the feast. Hans had to work, he was scheduled since June when we thought everything was fine and I would be back in SC for the holidays. So poor Hans was working and he had prosecuting authority for 7 juristictions in Sweden. So basically, he was working alone and the only prosecutor on duty for about half of Sweden. It kept him busy.
When he came home we had a traditional Swedish smorgasbord. WE all ate too much and had to sit on the couch for a couple of hours. Christmas came to catland and Sessan had a christmas dinner of tuna-spoilt little thing. Hans and I went to Midnight Mass at the Lutheran Cathedral in Kalmar. Not very Lutheran-there was incense! It was nice and the music was great. I just wish I understood more-another reason to learn Swedish quicker.
Today, we are heading back to his moms to eat the leftovers. We will also be visiting Hans dad's grave for a bit. But first, Hans had to go back to the hospital today to visit his poor uncle who has been there for a couple of days. When it rains it poors! I hope he is out soon.
We are doing our best to take it easy and enjoy each other. I had the most fantastic night sleeping-so if my sister is reading this HA! I slept for almost 10 hours. That sure beats the 5 that I had been getting. I am in no pain, my color is still good, and my appetite is ferocious! All good signs so I am still praying for no cancer and the Christmas miracle.
When he came home we had a traditional Swedish smorgasbord. WE all ate too much and had to sit on the couch for a couple of hours. Christmas came to catland and Sessan had a christmas dinner of tuna-spoilt little thing. Hans and I went to Midnight Mass at the Lutheran Cathedral in Kalmar. Not very Lutheran-there was incense! It was nice and the music was great. I just wish I understood more-another reason to learn Swedish quicker.
Today, we are heading back to his moms to eat the leftovers. We will also be visiting Hans dad's grave for a bit. But first, Hans had to go back to the hospital today to visit his poor uncle who has been there for a couple of days. When it rains it poors! I hope he is out soon.
We are doing our best to take it easy and enjoy each other. I had the most fantastic night sleeping-so if my sister is reading this HA! I slept for almost 10 hours. That sure beats the 5 that I had been getting. I am in no pain, my color is still good, and my appetite is ferocious! All good signs so I am still praying for no cancer and the Christmas miracle.
Sunday, December 23, 2007
Christmas at Home
Well, a week ago I went into the hospital to have my spot on my liver brushed and a drain put it. Typically me, things did not go to plan but eventually worked out. The drain had a little leak and everytime I moved the most severe pain gripped me. I stayed in bed, even refusing to get up to go to the bathroom until the LAST moment. Eventually my tissue grew around the tubing and closed the leak. Instead of being in the hospital 1 night, I was in 3. I really cant get enough hospital food. Since every cloud has a silver lining-1)when you throw up after surgery, it is ok, actually the best experience I have had throwing up. There is nothing in your stomach, so no bits get caught in your nose so you dont smell vomit for hours. 2) Even when pain medicine doesnt work, if they give you enough, you pass out and dont feel a thing 3) I had a wonderful chance to improve my Swedish and learn all sorts of words they dont teach you in class.
On the last day in the hospital, we spoke with my doctor in charge. The initial pathology reports from the brushings show no cancer. GREAT! Since it is Christmas, we need to wait for a more detailed analysis. Dr. Håkansson has schedued a PET-CT scan on January 2 to investigate further and I will also meet the following week with the liver transplant team in Gothanburg. My records are being sent to Prof. Garden in Scotland who did my first liver snip to see what he thinks as there is a possibility that if needed, I could have surgery there. I am just praying, hoping, sacrificing chickens that the spot is not cancer, but scar tissue buildup. I am hoping I am that Christmas miracle. Dr. Håkansson wasnt too convinced when the brushings came back cancer negative. Quote "When you go fishing, just because you dont catch any fish doesnt mean there are no fish in the lake" Trust a Swede to make a fish analogy!
Anyway, I feel great now. The area around the drain is only mildly tender if that. Though it does gross me out to see tubes tangling from me. I think it makes me look like a household appliance and I should be plugged into the wall. I slept deeply last night until Hans alarm clock woke me up, which is a major improvement. I feel so good now that I have recovered from putting in the drain that I just dont think it is possible I am sick.
Hans and I are going to have a quiet Christmas. They celebrate it on the 24th in Sweden, but unfortunately Hans is on duty at the prosecution chamber until 5:00. We will then go to his mothers and have a traditional Swedish Christmas smorgasboard. We are going to midnight church service at the church where Hans was baptised. Until then, I will watch the Grinch who Stole Christmas and Rudolph (classic versions of course) and nap on the couch. Hope everyone has a Merry Christmas!
On the last day in the hospital, we spoke with my doctor in charge. The initial pathology reports from the brushings show no cancer. GREAT! Since it is Christmas, we need to wait for a more detailed analysis. Dr. Håkansson has schedued a PET-CT scan on January 2 to investigate further and I will also meet the following week with the liver transplant team in Gothanburg. My records are being sent to Prof. Garden in Scotland who did my first liver snip to see what he thinks as there is a possibility that if needed, I could have surgery there. I am just praying, hoping, sacrificing chickens that the spot is not cancer, but scar tissue buildup. I am hoping I am that Christmas miracle. Dr. Håkansson wasnt too convinced when the brushings came back cancer negative. Quote "When you go fishing, just because you dont catch any fish doesnt mean there are no fish in the lake" Trust a Swede to make a fish analogy!
Anyway, I feel great now. The area around the drain is only mildly tender if that. Though it does gross me out to see tubes tangling from me. I think it makes me look like a household appliance and I should be plugged into the wall. I slept deeply last night until Hans alarm clock woke me up, which is a major improvement. I feel so good now that I have recovered from putting in the drain that I just dont think it is possible I am sick.
Hans and I are going to have a quiet Christmas. They celebrate it on the 24th in Sweden, but unfortunately Hans is on duty at the prosecution chamber until 5:00. We will then go to his mothers and have a traditional Swedish Christmas smorgasboard. We are going to midnight church service at the church where Hans was baptised. Until then, I will watch the Grinch who Stole Christmas and Rudolph (classic versions of course) and nap on the couch. Hope everyone has a Merry Christmas!
Sunday, December 16, 2007
Bloodwork today
So Friday at the hospital wasnt so nice. I found out my liver enzymes were heading up-not what I wanted to hear. I had a brute of a man doing the ultrasound on me. He pushed so hard against my incision that I cried out and then actually cried from the pain. Then a very nice woman from the x ray department started to talk to me about the procedure on Tuesday. She said something about the catheter they were putting in to let me drain and that they did not know how long it would be there. I was like umm WHAT? Excuse me, I am just having a liver biopsy. I burst out crying. The poor woman is trying to explain to me that I need a drain because of the liver enzymes and I just keep repeating "I dont understand". She leaves me and calls my normal doctor, Dr- Håkonsson. He literally comes running down the hall to get to me. He explains more, but it appears that with the liver enzymes going up, I need a drain to let the bile stuff out before I become jaundiced. Ok, but I did not like it when he said that I might have to have a permanent drain (stent) put in. Well, no, I dont think so. And that is my medical opinion.
So I have had a really interesting couple of days trying to come to terms with the idea of a bag and tube hanging out of my body. I am 33 and that is not where I want to be. But, it is only going to be temperary-if I have anything to say about it!
Today, I have more bloodwork and a meeting with the people who will knock me out for the procedure. Hans is coming with me so there should be no more drama scenes like last time and if there is a language issue,he will be able to help. Wish me luck.
Oh, lets not forget I have a Swedish test today after my hospital visit. I dont have much hopes of passing but that is ok.
Kris
So I have had a really interesting couple of days trying to come to terms with the idea of a bag and tube hanging out of my body. I am 33 and that is not where I want to be. But, it is only going to be temperary-if I have anything to say about it!
Today, I have more bloodwork and a meeting with the people who will knock me out for the procedure. Hans is coming with me so there should be no more drama scenes like last time and if there is a language issue,he will be able to help. Wish me luck.
Oh, lets not forget I have a Swedish test today after my hospital visit. I dont have much hopes of passing but that is ok.
Kris
Subscribe to:
Posts (Atom)
