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.

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.

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!

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

I am too funny!

After reading Kelley Lester's blog and some others linked to the cholangiocarcina.org website, I thought it was high time for me to start a blog as well. Well, I forgot I started a blog..em about 7 months ago and never did anything with it. So here i am on my second attempt to be a blogger...and this time I will remember that I have set on up!

Things are going well in Sweden. The air is crisp and the sky is in permenant overcloud mode. I am trying to adjust to the cold. I bundle up in layers and layers and then bicycle to where I need to go. The problem is that there is nothing that can cover my face enough and I truely feel JAck Frost nipping at my nose! I can no longer drive since I have lived now in Sweden over a year, my American driving license is no longer valid. I will need to take both a theory and practical test in the upcoming months. It is like being 15 again! If only I had the 15 year olds body to go with the driving test.

My Swedish class is going ok. I do get annoyed (sometimes just mildly and sometimes wildly) at the whole process, other students, and myself. I will have another big test on monday and that will hopefully move me along to another class. Right now, despite everything, I am pretty much still on track and hopefully I will be able to take the national test in MAy/June. That will allow me to move on to SAS classes which are geared to helping your language improve so that you can get a professional job in Sweden.

Now-the bit you have all been waiting for-enough about your boring mundane life get on with the cancer I hear you say....Well, things are going. I have been in talks with an oncologist at UNC Medical and as always with my Swedish team. The bad news is they think its back, the good news is-they agree on the first steps forward. I had an ERCP (camera down the throat) last week to get a looksy and tissue sample to varify its cancer. Thanks to my new plumbing, that was not successful-though the good news is that last time I had an ERCP I woke up during the procedure, gagged, hit the doctor and tried to pull the camera out of my throat-that did not happen this time, much to everyone's relief. So plan 2-I will have a liver biopsy. They will insert a needle and using imaging guide it through the body and into my liver and bile duct. I will parttake of this pleasure with the help of some anaesthesia. Again, my new plumbing and placement of the spot in question makes this a difficult (*if at all possible) procedure. So today, I am off to have an ultra sound to map my innards and plan an attack. If they think it is possible, I will have my liver biopsy next Tuesday. Do you see how fate just WANTS me to take that Swedish test on monday?

I will be going to the hospital by myself for the ultrasound. There was a mixup in the times and Hans went with me yesterday but we were told I needed to come back today. I was/am furious. Hans took off work to come with me and unfortunately he cant come again today because he has a court case out of town. Hans mom offered to come with me, but I am in the mood to be difficult. I will go by myself and make things as hard as possible for them. My Swedish is ok, but I need everyone to speak to me so S-L-O-W, repeat often and to use baby words sometimes. I just love thinking about how frustrating it will be for the technician to deal with me. Sometimes, I am just plain evil.

I am starting a blog

I have decided to start a blog for myself and to keep my friends and family updated on what is happening as I settle into Swedish life and try to get my head around the whole cancer thing. I was inspired to begin by the supportive people on the cholaniocarcinoma foundation website.

Besides, blogging will give me one more excuse not to do other work....

I have now been back in Sweden for almost 2 months and it has been 4 months since I returned my very exciting trip to Glasgow for Christina and Magnus's wedding which resulted in a terrible case of jaundice, several misdiagnosis, a rare cancer diagnosis, 8 hour surgery to remove my gall bladder, bile ducts, and parts of my liver, almost 2 months spent in 3 different hospitals. I am healing well from my "Frankenstein" surgery and the train track incision is slowly healing and I am capable of some periods of extended walking and bike riding. Sure beats sitting in a hospital listening to people moan. That is very upsetting.

Although I was told in Edinburgh that I needed chemo, the doctors in sweden are not going along with that. It is a little frustrating, but we will see. They are researching the cancer some more and then going to make a final decision. That is the problem with such rare cancers, there is not enough trials on them to offer clinical reasons or justifications for treatments. Oh well, on the bright side the type of cancer I have almost always comes back so I can have my chemo later.