6 a.m. Phone Call

I knew staying up late reading last night would be a bad idea. I just knew the phone would ring at the butt-crack of dawn. But since I am so super awesome I was totally able to be coherent at 6 am. So I had a nice long talk with Dr Lindor this morning. NO WILSON DISEASE!!!!! Can you tell I am happy about that?!?!?! That was what I was most scared of. So the high iron and low ceruloplasmin (too much copper) in the blood is caused from an inflammatory process going on inside the liver. That will happen with PSC. And the medication that Rick takes for the PSC actually tends to mask the actual liver enzyme panel numbers so it can be hard to tell how the liver is doing by bloodwork alone. The bilirubin is going to cause problems because of the Gilbert's syndrome, so that is number that will fluctuate. We just have to make sure that if we notice Rick's eyes get a lot more yellow or his skin start to turn yellow then we know it is the PSC and to call the doctor.

Rick will continue to have liver pain off and on. And I have had it described to me as if someone is taking a pair of pliers and grabbing and twisting the liver. That doesn't sound nice to me. So as far as what the stage the PSC is actually in can only be confirmed by a liver biopsy which Dr Lindor thinks is unnecessary at this point. So the plan is to monitor the blood work at four month intervals and return to Mayo once a year for a full evaluation. Dr Lindor thinks it is important to check everything out to make sure that there is no cancer forming, since that can happen with PSC. So Rick would go back to Mayo for an ultrasound and bloodwork, and those would tell us if further testing is needed. And it would be best to be at Mayo for further testing if that is what is needed. That will be a good way to keep track of how the PSC is progressing as well. And of course if there are problems throughout the year that would change the course of treatment.

So what does all this mean? It means that at this point Rick's PSC is progressing, but slowly. I am not sure how many of you know that Rick will eventually need a liver transplant, but it looks like that will be at least a couple years down the road. As the PSC progresses further it will damage the bile ducts and then it will just be a matter of time before he will likely need a new liver. Now in my little head I wonder why not just take out the diseased one now and let him feel better but that is not how organ transplant works.

On thursday we meet Rick's new internal medicine doctor. We will have lots of info to throw at him but also some other lingering questions. Like what the heck is going on with the low blood counts. And, um hello, where is the spleen? Dr Lindor's recommendation was to get another colonoscopy since it has been four years, so we will also ask the new doctor about that as well. Rick's local GI didn't think it was necessary for another year but with the crohn's/PSC combo it is better to be safe than sorry. So if we can get two doctors to recommend it be done now then hopefully we can convince the doctor to do it. After all, it has been four years since the first one.

So I think we have some good answers. I am going to try to go back to sleep for a bit. Hopefully that phone call is what I needed to get out of my funk. I just HATE that Rick has to deal with all of this. But now we have a better understanding of what is going on. And knowledge is power.

So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own. Matthew 6:34

Until next time,
Jaime

Family Fotos

I tried to get some different shots of us while we were at the lake. And then I had some fun with the editing software. I have been experimenting more lately with different shots and poses. I was getting very tired of the same old shots everytime. I think it gets old when looking through my photo albums and all the pictures are the same. This has been fun for me. I am hoping to get a camera with more functions at some point so that I can do even more. Although that will be a while down the road. But in the mean time I have been doing some research on how to focus differently and other compositions. It is a lot to learn and I am not sure how to do it all on the camera I have.

BTW, I called Mayo today and never heard back from the doctor. Hopefully tomorrow, but I hope he doesn't call first thing in the morning because that will be like 5 am.

Until next time,

Jaime

Bye-bye tooths

My little Megan is now toothless. Two days ago, July 26, Megan lost her very first tooth. I pulled it out because it was super loose. She cried and cried afterwards because she said it hurt. I felt so bad. But then she got an otter pop and that made it all okay. The big permanent tooth is already coming in behind it. That is how I found out that the tooth was loose in the first place. She was cuddling with me in bed and when she yawned I saw the big tooth behind her little tooth. I couldn't believe it and then we discovered how loose that tooth was. I was so worried she would loose it while we were gone but thankfully that didn't happen.

Today Nana (my mom) came over to see the missing tooth. While Nana was here we convinced Megan to let me pull out the other tooth because it was super loose too. Megan had not forgotten that having the other tooth out hurt so she was not really into it. But Nana bribed Megan with two dollars so she let me wiggle the tooth and it just popped out, with a little bit of crying. It was funny because Megan didn't even realize I had pulled out the tooth. When she saw it she was shocked. And of course she got another otter pop.

So now the tooth fairy will be visiting Megan for the second time in three days. I still have the tooth fairy pillow that I used when I was little so that is what Sam and Megan use to put their teeth in for the tooth fairy. On saturday night the tooth fairy left four quarters for Megan, I wonder if the tooth fairy will leave a little more this time since it has only been two days since she was here last.

The pictures are from saturday night after Megan lost the first tooth. You can see the hole where the tooth came out and the big tooth already coming in. You can also see the tooth next to it barely hanging on.


I can't believe that Megan has already lost two teeth. She just turned five less than two months ago. How can she be growing up so fast? She is still my baby. I can't believe how fast they grow up. Megan always asks me if I want her to stop growing and stay little. I wish that was possible. I wish she wasn't going off to kindergarten in September. I want to keep her home with me but I know that she needs to go to school. I look at her and think she doesn't look big enough to go to kindergarten. In my eyes I guess she is still a baby.

Until next time,
Jaime

Fun at the lake

The girls really had a fun time at the lake. I usually love being at the lake but this year was a bit different. I really did try to enjoy myself but my heart just wasn't into it this year. Despite that I did get some good pictures. And Rick had a good time fishing. He went fishing in the float tube one day and the rest of the time he spent on the dock.

The girls had a blast swimming. Samantha loves to run and jump off the dock. She likes to add "style" and spin around or spread out her arms. It took her until the last two days to get brave enough to jump off without her life jacket. The end of the dock was up to her chin so it took some convincing on our part for her to realize that she would be fine. But once she figured it out she had even more fun without the life jacket. And the goggles made it easier for her because she didn't need to plug her nose.

Megan is a bit more timid than Samantha, although that is hard to believe. Megan did not want to jump off the end of the dock. We tried that last year and she cried when she popped back up. But by the last two days Megan discovered that it was okay to jump off towards the shallow end. And she was so cute when she did it. She had to count or have other people count for her. And she finally discovered that the life jacket helps to float so she was swimming all around, above her head of course.

We had a couple camp fires and roasted marshmallows. Megan was so funny. She just really enjoyed burning the marshmallows. She would burn them until they fell off the stick. And then she would start again. There were a lot of wasted marshmallows but she had so much fun. Rick and I enjoyed sitting together in front of the fire after putting the girls to bed. We also had a great night sitting out on the dock by ourselves until 11 pm. We looked at the stars and just talked. It was so nice.

Here are some pictures of our two weeks at the lake:

We will be back at the lake next summer for two weeks again. I can't help but wonder what next year will bring. I remember last summer, when we were very financially strapped, thinking that the next summer would have to be better. Boy I never could have imagined that this would be how we would be spending this summer. But we are very blessed to have two wonderful daughters to keep us busy. They can really brighten up the day, or really make me mad, it just depends on the day. If only they would clean up their rooms.

Rick goes back to work in the morning. His beard had to be shaved off tonight. I actually cried when he was shaving. I REALLY liked the beard. Now it is back to the real world. Back to Rick working all the time and being tired. Back to going to bed at different times and waking up at different times. Back to not having any time together. Oh I want to go back.

Until next time,

Jaime

Some of the results are in

We got back from the lake last night. I still have a ton of unpacking to do but I am just taking it easy for right now. My legs got super sunburned yesterday so I am in a bit of pain today. I got distracted and forgot to put sunscreen on my legs. Ooopps!!

We received a letter from Mayo in the mail today. I have been so anxious waiting to hear back that I almost called Mayo yesterday but Rick said to wait until next week so I didn't call. The results from further blood testing show that Rick does not have hemachromatosis. That is the iron levels in the blood. I don't know why his iron is so high but it is not due to hemachromatosis. Rick meets with his new Internal Medicine doctor on thursday so we will be asking him about the iron issues. It may just mean that he has to take a different vitamin without iron in it and watch his iron intake from food. So that is at least a bit of good news.

The results from the ERCP are also back. There is a lot of dilation and stricturing of the second and third branches of the ducts inside the liver. There is more disease involvement in the right side of the liver than the left. I am hoping that we will be able to talk with Dr Lindor about what all that means. But it looks like the common bile duct is involved as well (the doctor in Spokane said that it wasn't). So I know that a lot of you are probably wondering what all that means. The stricturing means that the ducts are narrowing and that makes it harder for bile to flow through the ducts. That is how the liver becomes damaged in PSC. It looks like the ducts outside of the liver are not involved. I do not know what this means in terms of outlook, but I am hoping to get that answer from Dr Lindor as well.

We have not heard about the results from the urine copper test. I will be calling Mayo on monday to find out if those results are back. Those are the results that I am most anxious about. If there is copper in the urine then we will be heading back to Mayo for a liver biopsy. That is what I would like to find out so that I can try to get Rick back there before school starts for the girls. The more research we do about Wilson Disease the more worried we get. I know that it says that there are medications to help get rid of the excess copper but with two diseases that are damaging the liver I wonder what that means in terms of outlook.

There is another question that has been raised since we returned from Mayo. Rick had his bloodwork done for the doctor here and some of the lab values came back very low. He has had low white and red blood cells for a couple months that the doctor has been watching. Well it has dropped significantly in the past month and a half. So he will do more bloodwork next week and if it is still low he will be going to a hematologist to find out what is happening with the bloodwork. I can't believe we are potentially adding another "ologist" to Rick's list of doctors. This is getting ridiculous. Just when I was starting to relax at the lake we get a phone call from the doctor's assistant that says to call back right away. So we had to leave the lake again for more bloodwork to rule out mono. I thought it was a silly thing to be testing for since Rick would know if he had mono but the doctor said that it had to be ruled out to procede. Of course it came back negative. So now we wait until thursday and do bloodwork again and hopefully know by friday if the counts are still low. If they are we will have another doctor appointment to schedule. So right now Rick is more susceptible to infection and he has to be careful to not be around anyone with something contagious.

I feel like just when things are maybe looking better something else comes along to kick Rick in the butt. He had a day with really bad liver pain while we were at the lake and it just reminded me of what our life is turning into. I have to figure out the best way to cope with all of this so that it doesn't continue to knock me further down. Rick amazes me with his ability to cope with all of this. I think that being at home makes it worse for me. It is my comfort zone so I feel like all my emotions boil over easier at home. I am taking it one day at a time though.

I will post pictures from the lake later. I have to get some unpacking and laundry done. Tonight is Rick's last night of vacation so we will spend some final free time together.

Until next time,
Jaime

I Am Not Strong Enough

I know that we are supposed to be relaxing at the lake but I just can't. I am having a really hard time since coming home from Mayo. I have been very emotional and all I want to do is just go back so that they can make Rick better. The possibility of adding more problems to the mix is driving me crazy. I am just so sad I can hardly take it. I look at Rick and think how can he possibly be so sick? And I am serious when I say that I better not hear anyone else say he doesn't look sick. That is the problem with all of this. He is so sick on the inside but doesn't look it from the outside.

I feel like I am going nuts waiting for test results. Rick finished the "pee" test today and we had it sent out to Mayo. I don't know how long it will take to hear back from them about that. I hope it doesn't take too long. That is the test that is going to tell us if there is copper in the urine. If there is we will probably be heading back to Mayo soon for a liver biopsy. I have made the decision that it is more important to get Rick good medical treatment than to have money. I don't know how we will continue to pay for our trips to Mayo but I know that he needs to go there for treatment.

I feel like I had so much inner strength when Rick really needed me to last week, but this week I am falling apart. I didn't realize how much energy it took to be strong for him and now I am exhausted and feel like I have been through the ringer. I can't believe he handles this so well. I am just scared that I will lose him to all of this. I don't know what I would do without him. I am just not strong enough to deal with all of this. I wish there was a way to fix it all now so that we can move on with our lives.

I know I must sound so pathetic. I am just teetering on the edge right now and I need to take a step back before I fall off. Please understand that I am not myself if you see me. I just need some time to absorb all that has taken place and figure out how to go from here. I love Rick so much. He is so wonderful to me and I am just so lucky to have him as my husband. I just want to hold on to him and never let go.

I hope that you will continue to keep us in your prayers. We both need them, even if Rick says he is fine.

I am going to head back to the lake this evening. Hopefully I will be able to start enjoying it a little bit more.

Until next time,
Jaime

Twin Lakes Here We Come

We are getting ready to leave for the lake. We will be spending 12 relaxing days at a cute beach house in Twin Lakes Idaho. This will be our third summer that my mom has rented the beach house. There is no internet service so I don't know how I will go that long without my computer but I have no choice. So I will be back on July 25th. I will have lots of pictures and stories to tell when I return. And hopefully we will also know some more about Rick by that time.

If anythings happens between now and then I will let you know.

Until next time,
Jaime

Emotions are spilling over

I think that coming home has brought everything to the surface for me. I am so emotional tonight. I just keep crying thinking about everything that has happened this past week. My head is spinning from exhaustion. The thoughts about what the future may hold just keep swirling through my head. I know I shouldn't think about these things. So many of you have told me how strong I am and I appreciate all the support, but tonight I definitely feel weak. I have such an ache that I am praying will ease up so that I can move on. I am going to have a good nights sleep in my own bed and my hope is that I wake up tomorrow refreshed and ready for vacation.

I have a lot of people I want to thank for the support. I am so grateful for finding two other PSC wifes that have given me so much support and comfort. Thank you Dawn and Erin. I didn't realize how much comfort could come from someone I had never met. Erin I will contact you when I get back from vacation. I also want to thank Carrie for the advice about the water. I was surprised to hear from you, but so glad that you signed the blog. Thanks for letting me know about the copper/water connection. I want to say thank you to Sally for forwarding the blog on to so many others asking for prayers. I know it was the prayers from so many people that gave me the strength I didn't think I had to do this for Rick.

And to all our family we really appreciate the support you have given us. We still have a long road ahead of us and will need your prayers to support us along this path.

I feel like I could say a personal thank you to everyone that signed the blog but I just can't right now. So please know that if you signed in, or even if you didn't, thank you for reading and following along.

I will post about our vacation plans before we leave tomorrow.

A very tired Jaime

We Are Home!!!!!!!!

We landed in Spokane at 10:10 am this morning. We got up at 4:30 am central time this morning, so in pacific time it was 2:30 am. We are tired. The girls are home with us now and cuddling with us on the couch while Rick watches Ice Road Truckers. It is good to be home.

Rick is not feeling great due to some lingering pain from the ERCP and a stomach ache from the antibiotic. He is not supposed to be lifting anything so I have to keep taking things away. I have lots of unpacking and laundry to do today.

I have some other things to say but I will post them in a little bit. I just wanted everyone to know that we made it home safe and sound.

Jaime

Good-Bye Mayo

Good bye Mayo Clinic. It has definitely been an educational experience. This is the most amazing place to be. This is the mecca of medicine. I am so glad that we were blessed enough to be able to come here. I know we are leaving with some unanswered questions but I know that Dr Lindor is working to get us all the answers we are seeking. It will still be a couple weeks before we know more about Wilson's disease but we are researching as much as possible so we know what to be asking if that is in fact the diagnosis. Hopefully it will be sooner than that when we learn about the iron tests (hemochromatosis). I was able to get a little more information from Dr Lindor about the ERCP. The right side of the liver is more diseased than the left side. There is some small duct blockages from my understanding and the ERCP confirmed the dilation of an area of the common bile duct. The entire report was not back yet and Dr Lindor said he would send us the entire report when it is all back. You know I will be waiting on pins and needles waiting to get that in the mail.

Since this is our last night here in Rochester I thought I would post a couple more pictures of the area we have been getting to know very well.

In front of the Mayo Building:

The entrance to the Mayo Clinic:

The view from the 19th floor of the Mayo building. This is where Dr Lindor's office is located:

The Gonda Atrium:

The Chihuly Sculptures hanging in the Mayo Nurses Atrium:The Mathews Heritage Dome:

The view looking out from inside the Heritage Dome:

The underground pedestrian subway system that links the Mayo buildings and local hotels:

One of the direction maps inside the subway:

I know this is an experience that I will never forget. The feeling of helplessness and fear that I felt yesterday will be hard to forget anytime soon. The thought of what happened yesterday still makes me ache inside. And I know that yesterday I proved to myself that I can handle more than I thought I could. I hate vomit. I always gag and even when the kids get sick it is all I can do to not throw up when trying to help them. But yesterday I didn't even flinch when Rick started getting sick. I knew he needed me and I was right there to help him. He doesn't remember much about it except that he got sick. So I was hoping for super silly Rick and instead I got super sick Rick. I don't want to see super sick Rick again.

Even though this was a very stressful week for me I did enjoy having Rick all to myself. He works so hard that I don't get him to myself very often. It was nice to take walks together and hold hands and just talk without being interrupted by little girls. I realized just how much I really am in love with my husband and how much I miss him when he is working. I am grateful for such a wonderful husband. I am a very lucky woman. And I am falling apart inside thinking of all the new challenges he is facing. But he has the most amazing outlook on all of this and I am going to follow him through this with as much grace as he has.

Rick wants you all to know that he is grateful for all the support and encouraging messages from everybody. I wanted him to let me put his words and how he feels about all this on the blog but he didn't want me to say how he feels. He just wants to say thank you to everybody for caring about him, and us. And I second that. So thank you all very much.

Our plane departs Minneapolis at 9:10 am (central time) and lands in Spokane at 10:15 am (pacific time). So the next time you hear from me I will be back at home with my girls.

With many thanks and love and hugs,

Jaime and Rick

We are done

First things first, Rick is finally done being poked and prodded. He doesn't look like himself today. He is having some pain in his abdomen from the procedure yesterday and he just doesn't have his normal color back. He looks very tired. It breaks my heart to see him this way. I just wish I could make him better. I wish I could take it all away.

We met with Dr Lindor this morning. The results from the ERCP are not completed yet so he called the doctor that did the procedure and he was able to confirm the PSC diagnosis. We won't know the exact results until later so I don't have the answers for some of the main questions just yet. What we still need to know is how much of the ducts are involved and how much damage is there. What we do know is that the common bile duct, which is the main duct leading to the liver, is involved. It is dilated and that is more than likely the reason that the duct was cut during the ERCP. Of course we won't know for certain until we see the report. The ultrasound that was done here could not find the spleen either (the one done at home couldn't find it). So the spleen is still missing, but that is apparently not a problem. Sometimes the spleen can just be really small or deeper than the ultrasound is able to see.

Rick does have Gilbert's Syndrome. It is nothing that needs to be treated. It gives us the explanation for the elevated bilirubin and the yellow eyes. So that is one question answered.

There are two other things still being looked into. First off will be the Iron levels. Rick's iron levels are high so they are doing some more bloodwork to check for a certain gene mutation. To be completely honest with you I am not very clear on what this one means. We will know how this needs to be treated once the blood tests are complete. Second is his high copper levels. Rick had high copper levels in his bloodwork. So there will be a urine test to check for copper levels in the urine. That can't be done until we get home but it is no big deal. That will just be sent back to Mayo once it is done and then we will know if a liver biopsy is needed. If there is copper in the urine they will do a liver biopsy to check for copper in the liver. If there is copper in the liver then a diagnosis of Wilson's Disease will be made. This is one diagnosis we are really hoping won't be made. It is another potentially fatal disease. And it also damages the liver potentially leading to a liver transplant as well.

Hopefully the results from the ERCP will be ready before we leave here. The doctor will call if they come back today and let us know what the report says. If I hear from Dr Lindor I will let you all know what he says.

Dr Lindor's recommendation for Rick was to have full bloodwork done every four months that will be drawn in Spokane and sent to the Mayo Clinic. And a yearly ultrasound that he would prefer to be done at Mayo. So it appears that Rick may be making yearly trips to Mayo from now on. I don't know how we will afford that but it is necessary to keep a close eye on the PSC. The CA 19-9 tumor marker blood test and the ultrasound will be a good way to monitor for bile duct cancer. Dr Lindor said that as long as it is caught really early it will be treatable with a liver transplant. So it will be very important to keep up on that. Just for reference anything over 55 for the CA 19-9 is high and Rick's was 9. So that is a good thing!

So in conclusion (haha) Rick came to Mayo with three diseases and is leaving with the possibility of having six diseases. I hope everytime we come here we don't leave with twice as many problems.

As soon as I know any more results I will post them. For the rest of today we are just going to rest and reflect on this experience. As long as I can get the image of how Rick looked yesterday out of my head I will be okay. That was very tough on me and I am having a hard time looking at him without thinking about it.

And for those of you that have sent such lovely and supportive messages we both want to say a huge THANK YOU!! It means a lot to us to have so many people thinking about us. I have been told that I am stronger than I think I am. I have to tell you that it certainly didn't feel that way yesterday. And I still feel like I could fall apart at any minute. But I know that this has all been worth it. Thank you for following along this path with us. We love you all!

Until next time,

Jaime

Really Hard Day

Today turned out to be REALLY rough for Rick. He was not worried about it going in but I had this terrible feeling something was going to go wrong. Apparently the endoscopist had to cut into the common bile duct so that has caused him some pain. And after he was brought back to recovery he was not feeling good and starting throwing up blood. His blood pressure fell and he lost all color. It was very scary for me to watch. He has never had a problem like that after having an ERCP, the only problem he had before was being extra sleepy from the sedatives. Since the duct was nicked he has to take an antibiotic for a week to make sure an infection doesn't develop. The ERCP took a lot longer than the last one he had done at home. And so tonight he is not feeling good. He was in recovery for a long time and we haven't been back in the hotel for very long. I had to push him back to the hotel in a wheel chair because he is too groggy to walk very far.

On top of my being VERY anxious about this procedure there was a severe storm rolling through Rochester during the wait. I was in the family lounge watching the emergency broadcast warning of the dangerous storm. The nurse came in the lounge and closed the curtain and told us to stay away from the window. And then we were told to move to the nurses station if a tornado warning was broadcast. So of course that didn't help my nerves. I took a picture of the clouds from the window in the lounge (it is posted below).


BEFORE:

DURING:

AFTER:
We have an appointment with Dr Lindor at 8 am tomorrow morning. Rick is not allowed to eat anything until after that appointment because they may still order a liver biopsy. So tonight he is only allowed clear liquids like jello and chicken broth. He is feeling a little hungry but he doesn't feel good so that makes his hunger a little less. I am not feeling really great either. The stress of this is really starting to take its toll on me. The nurse was nice enough to give me a sandwich while Rick was in recovery. I wasn't prepared for being there that long so I didn't have anything but some crackers. I wasn't prepared to see Rick that way. I am reeling a little bit tonight.

I will post tomorrow after the appointment with what will hopefully be a lot of answers. Please keep Rick in your prayers tonight.

Jaime

Please Pray

We are getting ready to head out the door for the hospital. I am very anxious. My hands are shaking and my stomach is in knots. Rick is fine, at least he says he is. Like he said, he gets to go to sleep and I am the one that has to wait and worry.

So this is what we are hoping to happen while we are at the hospital. We would hope that if you check in on us here on the blog that you leave us a message. We would love to have lots of comments to read when we get back from the hospital. That would be wonderful, but no pressure.

It looks like the doctor appointment will not be changed. We will meet with Dr Lindor tomorrow, so we won't have any answers today. I am disappointed and this will just extend the nervous feelings I am experiencing. Please keep us in your prayers as this is the hardest part of this entire experience.

I will let you know how he is doing once we are back in the hotel and settled in.

Jaime

Changed

The ERCP has been changed. Rick checks into Rochester Methodist Hospital at 12:30 thursday afternoon for a 1:30 procedure. The doctor appointment is still being rescheduled and we will know what time the return visit with Dr Lindor is by the morning. So this will leave friday open for the possibility of a liver biopsy. So by this time tomorrow we will hopefully know more. I am not getting my hopes up for fear of still not knowing anything. And I am praying that I will not experience another anxiety attack while we are here. At least we were able to get things changed. So tomorrow will be busy. I will post after the procedure to let you all know how Rick does. Please pray for an easy procedure and recovery. Tomorrow will be a little rough on Rick. He is a little nervous since things are done a bit differently here. I will be praying that he gets through this with no problems.

Thanks for the support. We really need it!

Jaime

Cross your fingers

I just got off the phone with a scheduler at the doctors office. He said that he is going to try to get everything switched around and call me back. I asked about flying so soon after the ERCP and he said absolutely not to fly home on saturday. And then the doctor appointment that was scheduled for later in the afternoon was ridiculous because he probably won't even be done with the ERCP yet. So he is doing everything he can right now. So please cross your fingers that this will get worked out.

I had an anxiety attack this morning, my first one ever. I need to get this done for my own sanity. And Rick is starving so he would love to get this over with as well.

I will let you know as soon as I know if there is time to update.

Jaime

My Feelings

To read about how the day turned out check out my previous post.

While waiting for Rick to have his bloodwork done this morning I felt very overwhelmed and decided to write my feelings down. I wanted to capture how I was feeling more for myself than for anyone else but I want to post it here so that I have it later. So this is what I wrote at 8:30 this morning:

I can't believe we are here. This is so unbelievable. I feel like I am living someone else's life. I don't want to accept the reality of my husband having a life threatening illness. I want it all to just go away. I want to live the life I thought we would have. Don't get me wrong. I will do whatever I have to to keep Rick here with me. But my stomach feels like it is in my throat. My hands are shaking. How did I get here? How did my hard working husband get here? Why us? Why Rick? I know I need to trust God is looking out for us, but it is so hard. I never imagined I would be in a waiting room at the Mayo Clinic. I can't believe that we are the couple that people look at and feel sorry for. My husband is my soul mate, he can't be sick. This isn't what I had planned. This isn't what I dreamed of. I also never dreamed I would love him this much. This has created a bond between us that we never would have had. But nevertheless I still wish this wasn't happening. I certainly never thought Rick's first plane trip would be to Mayo. I thought it would be to Disney with the kids. I worry that some people just don't understand what this all means. I don't want anyone thinking we came out here for fun. Granted we had a couple nice days but today is not fun. Sitting here waiting is not fun. Worrying and thinking what next is not fun. Watching Rick struggle is not fun. I know he hides so much so he can continue to look strong. I wonder if he is as scared as I am. I wonder what he is thinking while he is waiting in the other room. I wonder if he feels like this experience is just a dream and he will wake up any minute. I feel like that. I feel like I am in someone else's life right now. I miss my kids, I miss my husband, I miss our old life. It breaks my heart to see him going through this. I just love him so much!

Reading that made me sad. I feel so helpless sometimes. I want to be strong but right now I feel so weak. I will get through this and look back and realize I was stronger than I thought I was. Rick is so strong. He doesn't show weakness. Does he have weakness? I wish I could look at this through his eyes and see what he sees. I hope he doesn't see how weak I feel. I hope he doesn't see the tears in my eyes I am trying to hide.

More questions than answers

Unfortunately we don't have the answers we were hoping to have today. After giving 7 vials of blood this morning and fasting for 18 hours we have more questions than answers. In fact we don't have any answers. We met with Dr. Lindor this morning and he did not like the test results we brought with us from home. And there is the possibility of adding another disease to the list. I am not going to tell you what that is until we know for sure which will hopefully be by friday. Rick felt terrible this afternoon while waiting for the ultrasound because he had gone so long without eating. I was able to be in the ultrasound room with him because he basically told the technician that I was coming in no matter what. We do not know the results from the ultrasound, we will know when we meet with the doctor again.

So whats next? Well Dr Lindor wants Rick to have an ERCP done here at Mayo. He had one done at the end of April at home but those are the test results the doctor isn't happy with. So he wants it repeated here. Dr Lindor doesn't usually schedule a ERCP to be done during an evaluation like this because he doesn't like to do them unless absolutely necessary because of the risks it carries. But he wants to see for himself so off to Rochester Methodist Hospital we go. That is a Mayo hospital connected to the clinic.

What is an ERCP? ERCP stands for endoscopic retrograde cholangiopancreatography. The purpose of the ERCP is to get x-ray images of the bile ducts and to treat blockages of the bile ducts. A scope is inserted through the mouth and down into the duodenum where dye is then injected into the bile ducts and x-ray images are taken. A camera is on the end of the scope and other tools can be used to take brushings for bile duct cancer and treat narrowings of the ducts. IV sedation is used for comfort. And Rick is so super funny when coming out of that stuff. Hopefully that wasn't too much information. But I figured there would be lots of people that didn't know what an ERCP was.

So there you have it. I still don't have any answers and Rick has to go through an invasive procedure. We are asking you all to please pray that there is a cancellation so that he can have the appointment moved up. Currently the ERCP is scheduled for friday at 11:30 and our final appointment with Dr Lindor at 3:15. The problem with this is that our flight home saturday morning is very early and it makes me very nervous to have him get on a plane so soon after that test. Pancreatitis is a side effect of an ERCP and can involve an overnight stay or longer at the hospital if it develops. Since he has never had the brushings done for cancer, and that will be done this time, we don't know how his ducts will react. I would hate to have him start feeling very ill while we are in the plane. So I hope you will join me in praying for a cancellation.

Rick is sleeping right now. He is worn out from today. I will let you know how he is doing and let you know if the ERCP is moved up sooner.

I am very stressed out and worried about all of this. I am praying for the strength to make it through the rest of this experience. I miss my girls and can't wait to come home.

Until next time,

Jaime

Tuesday's Appointments

I guess the timing for all of this is working out great. Rick's eyes have gotten more yellow and he has been having more liver pain. He has been having pain while we have been here. We really are hoping that tomorrow's appointments produce answers and hopefully more tests will be scheduled. We are hoping to make the very most out of the Mayo experience. Rick had to eat a fat free meal tonight, which is hard enough for him to do because he needs the fat. The dinner had to be eaten by 7 pm and now he is only allowed to drink water until midnight. After midnight he can have a few sips of water and that is it. Poor guy, he munches all the time and so he is already hungry again and dinner was only 2 1/2 hours ago.

The itinerary for tomorrow goes like this:
7:55 check in at administration
8:40 bloodwork (lots of vials of blood)
after this he is able to drink more water but no food yet
10:00 medical history
10:30 appointment and evaluation with Dr. Lindor
1:30 abdominal ultrasound
after this he should be able to finally eat, but we won't know for sure until after the appointments

We have to go back forth between three different buildings to go to all the different departments. It will be a busy day and we are both a little nervous. Our Mayo experience is about to begin. This is where we pray that we will get the answers we are looking for. Hopefully by the end of the week we will have a complete understanding of where Rick stands with the PSC.

I can't believe this is about to happen and I just pray that I will be able to sleep tonight. I need to be strong for Rick. He needs me even if he won't admit it. I just have to be strong.

I am going to go cuddle with my husband now. I will post after we get back from clinic tomorrow. Please keep us in your prayers.

Until next time,
Jaime

Mall Of America

We decided to go to the Mall of America today. Minneapolis is only about 1 hour and 15 minutes from Rochester and the mall is a little south of Minneapolis. It is HUGE!! There is a large Nickelodeon Adventure amusement park in the middle of the mall. And there are four levels of shops. We walked the entire mall in about 5 hours. I am not kidding, I had Rick in a mall for 5 hours. That was a lot of walking. We ate lunch at Rainforest Cafe. It is so neat. It rains inside and there are huge aquariums with tropical fish. Monkeys and birds hand from the ceiling, although they aren't real. The atmosphere was great, the food was okay. The lego store was fun and Rick really liked it. It was fun and a nice way to enjoy our last day of exploring.

Here are some pictures from the mall.

Tomorrow brings the entire reason we are here. I will fill you in on everything that will happen tomorrow in a little bit. We have to run to the store to get a couple things for Rick. Check back in just a little while.

Back in a bit,

Jaime