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(80 replies, posted in Introductions!)

I have to thank everyone here on this site from the bottom of my heart, because if it weren't for the words of support and prayers as well as all of the family support, I don't know how I would have gotten through it.
Update on Norbert:
No words can describe the immense grief, sadness and loneliness that I feel in having to tell people that Norbert passed away on Sept 26. I set up a fund in memory of Norbert to support my sister-in-law for her ongoing battle against this horrific cancer. I will continue to fund raise for her until she passes. And then I will turn my efforts to the Cholangiocarcinoma Foundation.

I'd like to share what was written by my sister on my facebook page the day before I buried him:

Tomorrow morning, after 21 years of marriage, and having raised 3 boys, a stepson and a stepdaughter, my sister Olga will lay her beloved husband, Norbert Wierszewski, to rest. He was struck quickly and devastatingly with a cancer that took over his body with a merciless force, but which did not, could not, take over his spirit. In his final months I watched as his family and loved ones rallied around him continuously, determined to slow the fleeting days by infusing them with loving memories. It didn't work; the time flew by, and he was gone so quick.
I learned something that I didn't know a few months ago... it's at these times that we brace ourselves for loss, by filling our hearts with gratitude for the days we have left to share. And I'm grateful for that.
We'll miss you Norbert. Rest in peace, and thanks for the memories.

I go on with the support of a wonderful family, mine and his, both.  I move forward by doing everything I can for my brother and his wife. 

Update on Angeles:
She went to 3 facilities here in Michigan and flew out to MD Anderson this week.  All 4 places gave her the exact same treatment options, systemic chemo, gem/Cis. She flew back yesterday and went directly from the airport to the hospital. She was in pain and nauseated with vomiting. After a scan confirmed that the tumor has enlarged and may be invading the stent, they admitted her for the weekend.  I told my brother to take a week off of work so that I can take them on a week trip wherever they want before starting chemo. I will take to my grave the regret that I was never able to take my beloved Norbert on the trip that he wanted to take. I don't want my brother having the same regrets.

Olga

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(80 replies, posted in Introductions!)

Update on Angeles:
Well, its been a week since I went to the meeting with my brother and sister in law.  I was shaking inside through the entire meeting and it took everything in me to keep my composure and not fall apart. She has intrahepatic CC with the 7 cm x 7 cm tumor located in her liver making her ineligible for anything  except systemic chemo. She has mets to the head of the pancreas and spots on the lungs. Unlike Norbert, they didn't ask about a time frame. I think they were afraid of asking even though the doctors said enough that reading between the lines should have given them answers that they didn't want to hear. She ended up getting an infection from blood transfusions when she was in the hospital and had a stent placed because of blockage. She can't start chemo until she's done with the antibiotics which is not until Sept 22. I advised her to get other opinions and gave her the numbers to Barnes Jewish Hospital, Sloan Kettering, MD Anderson and UCLA. All of which I have heard about here in this wonderful forum. If anyone has any other suggestions, I will gladly pass along. Last I heard was that they were waiting for an appt at MD Anderson. Hoping that they get an appt soon.

Update on Norbert:
When it was determined that Norbert needed to go home on a hospice program, I was torn. After the first stroke, Norbert didn't want to be home. He's never been a homebody.  He wanted to be at a home that we are renting for a wrecking job that we recently landed. The home is on the lake and very peaceful. At home, I have much support including my next door neighbor who is a hospice doc, who when he found out about Norbert's diagnosis was coming over every day to check up on him. I spoke to the kids about it and after asking Norbert directly, he said he wanted to go to the lake house. Since we've been there we've had just as many rough days as we have good days. I can't go to my yoga anymore and that's taking a toll on my back. I just downloaded an audio version of my yoga and just started doing it at home while Norbert sleeps. Since we were hoping to have his nausea under control we decided to do a long weekend road trip to Northern Michigan, which is beautiful this time of year. We're in the rented RV now and he's doing well so far. Hoping to make it to the UP without issues.
One Day at a Time.......One Moment at a Time.
Olga

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(80 replies, posted in Introductions!)

Thanks, Lainy
I believe I received similar info from hospice already, but please feel free to send it to my personal email:  yogi1164@gmail.com
Thanks again,
Olga

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(80 replies, posted in Introductions!)

Thanks Duke,
That helps clarify. I believe what I did was the patient registry. I definitely want to look into doing the other one. Right now, I've been spending much of the time while Norbert sleeps, reviewing the posts to look for information that I read here before on Dr's and facilities that could possibly help Angeles. Her meeting with the Dr's is Friday and they have asked me to attend. I know they are both feeling like deer in the headlights right now, so I advised them to have family members in the meeting that will be thinking more clearly than they are now.
Thanks for all the encouraging words.
They are greatly appreciated.
One Day at a Time, is quickly becoming One Moment at a Time.
Olga

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(80 replies, posted in Introductions!)

How would I get my husband registered for the clinical research group? I did something here on this site where I answered a ton of questions.  I don't think that's what you're talking about because I didn't submit any health records or specimens.

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(80 replies, posted in Introductions!)

How is this even possible???!!! Yesterday, I found out that my sister-in-law, my brother's wife has cholangiocarcinoma stage IV. How can such a rare cancer hit the same same unrelated family members. I suspected that it was CC after visiting, Angeles in the hospital, when all they knew was  cancer, but I was hopeful that it wasn't. And last night, I got the news.
We are still in the hospital, and the last 2 days have been the toughest of my life. We made the decision for home hospice care after the oncologist explained that Norbert's liver was enlarged due to the cancer and that most of what he is going through is most likely cancer related. His heart rhythms are irregular and the Dr's decided to remove the monitors since there would be no treatment should anything happen to his heart. How ironic that we would be hoping for a quick and painless way to go with the heart when he spent most of his adult life concerned and taking care of his heart because his father passed of a massive heart attack. I can't stop asking, "why is life so unfair?".  It was heartbreaking seeing them take off the monitors because it was reality setting in. A reality that I didn't think I would have to face this soon.  It's just not fair.
I'm devastated for my brother and his wife. I want to tell them all I know. I've already told them about this website and hopefully they will be here reading and posting soon. I'm still waiting to wake up from this nightmare that just seems to be getting worse. How could God be so cruel?

I hope someday to understand what God wants me to learn from all this. For now, I can't seem to get past, " Why?"
I appreciate being able to vent here. Family and friends are remarkably supportive but it helps to vent here.
Thanks,

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(80 replies, posted in Introductions!)

My sister found it and will bring the new stuff to the hospital tomorrow for me. Unfortunately, Norbert suffered another stroke over the weekend and has been in the hospital since  Monday. We were supposed to leave on a 2 week RV trip on Saturday. The Dr. Is telling me that won't happen. I don't want to believe it won't happen. Not yet.

Olga
One Day at a Time!!

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(80 replies, posted in Introductions!)

Has anyone heard of Galeffi? I have been looking for brioschi, which I have heard on this website is wonderful for hiccups, unfortunately I haven't been able to find it. I have asked family members to find it and someone told me after inquiring, found that the company went out of business last year. They suggested Galeffi which can be found at any store that sells Italian products. If anyone is familiar with this product please let me know. I don't want to order brioschi online because with the company out of business what's for sale online is most likely old stock someone is trying to get rid of.
Any comments appreciated!!
Thanks,
Olga

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(80 replies, posted in Introductions!)

Thanks,
It still doesn't make me stop wishing I could do more, or make me stop asking, "why", or stop wishing I would wake up from this nightmare. But, it does help me get through another day. Before the stroke, Norbert was his old self dealing with the cards life dealt him the same as he always did. Since the stroke, he's not himself and it tears me up inside to see him like this.
I still get to yoga when I can and I never feel guilty because its what's gotten me through this year, so far.
One day at a time.
Olga

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(80 replies, posted in Introductions!)

What do you say to someone who's scared? I'm scared for him and it breaks my heart to see him like that. It kills me that I don't know how to comfort him and that I can't do more. I do what I can to stay strong for him but I have my meltdowns. We are Catholic but don't practice. Not that we don't believe in God, but after this years events I am left questioning God for the first time. I used to always say, "Everything happens for a reason, and God wants me to learn something from this."  But now, all I can find myself asking God is "Why???!!!"

One Day at a Time!!! That's all I can do now.
Olga

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(80 replies, posted in Introductions!)

Thanks for the advice, but Norbert has never had any symptoms from the cancer so he has no stent. The only thing we have to deal with at this point is the setbacks because of the stroke. And even those are getting better every day. That's why we figure we might as well finally take those road trips we've been talking about for so long.  Norbert and I have always been a "fly by the seat of our pants" kind of people.  So, off we'll go.
Hop in the car and see where we wind up!!
One Day At A Time!!!
Olga

And I do have all of the docs numbers in my phone.

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(80 replies, posted in Introductions!)

Well, Norbert finally got released from the hospital yesterday. I think the therapists were glad to see him go because he was being so difficult. He's been recovering very nicely from the stroke but still needs 24/7 supervision. Between myself and my sons, we should be able to handle it ok with other family members jumping in occasionally to help when they can.
In any case, we talked a few days ago and he told me that he did not want to do any more chemo. He was glad the doctors were advising against it. As much as I didn't want to hear this, I told him I would respect his decision. We also discussed letting the rest of his family and employees know about the cancer. I just want the employees to leave him alone about business and I'm hoping that if they know than they'll leave him alone, even if he should show up at the office.
There are some trips that we have been wanting to take and so we have decided to take them soon. They will be road trips that we will just pack up the car and leave with no definite plans or destinations. We've been talking about doing it for so long and I think its time. He's excited about it and we both need something to look forward to.
Just One Day At A Time!!!
Olga

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(22 replies, posted in Introductions!)

Wow.....that was so far over my head!!! I'm an accountant and hated anything to do with science when I was in school. But in any case, I'm trying to do my best to understand. Anyway, with my husband, Norbert, who has no desire to get into any trials, I'm wondering if it would be helpful to have any of these testings done? I'm thinking for the sake of future science and understanding of this cancer? And how and where would we go about to get it done? We have 4 sons and a daughter and God forbid any of them would have to go though what Norbert is going through. A little guidance on how to go about this would be appreciated!!
Thanks,
Olga

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(80 replies, posted in Introductions!)

Well, here we are.....3 weeks minus 48 hours......and Norbert is still in the hospital. They're talking about releasing him on July 24th. Not soon enough for Norbert.

I've done a lot of reading on this site in the last 3 weeks. The stories both heartbreaking and joyous. I feel like I have gotten to know many of you over the last few weeks. As if for the the first time since coming to the site, I was listening instead of talking.
I'm so jealous of those of you that are able to go on for years or find it early. Not that I'm not happy for you, but I'm still jealous just the same......if that makes sense.

Lainey, I think it was you that had a desmoid tumor.....I also had a desmoid tumor removed from my side about 8 years ago at Mayo, MN. Followed by radiation. I never gave it a second thought after getting it done, until now. It was because of my experience at the Mayo that I wanted Norbert to go there. And in the end I felt cheated because of the way they wrote him off. I get angry when I read stories from many of you how the Mayo helped you....yet they did nothing but send us home empty handed with no hope.

Funny how when something like this happens all of a sudden we're not invincible anymore. It no longer is something that only happens to someone else.

I liked the idea of someone suggesting years ago a way to search everyone here.....kind of a searchable database. I tried finding others in our shoes here in Michigan. Couldn't seem to figure out a
good way to do it.

Anyway, Norbert got transferred to inpatient rehab last week. He does OK when he doesn't feel that the therapists are talking to him like a 4 yr old or that they're giving him "stupid kid" games. Unfortunately, he had multiple strokes to the right side of the brain that left his left side weak. He also ignores looking to the left so he bumps into things and is not always steady on his feet. So, of course, the therapists are trying to make him acknowledge his left side. He just doesn't like the way they're going about it and doesn't always cooperate. This is so disheartening to me and I try to explain it to him. He seems to understand, but he's angry and takes it out on the therapists for trying to do their job. Not sure how to handle this.
The Dr's have told me the stroke was caused because he has cancer. They said when a person has cancer they are more prone to having strokes because of the cancer. Has anyone ever heard this before? Norbert was on blood thinners for years and still had a stroke, which makes me very scared.

Before he got here, he was taking zofran for nausea from chemo. Oddly enough, he didn't have nausea or vomiting during chemo. It started after the stroke and has had it ever since. It makes it hard for him to eat. He also keeps running low grade fevers that they can't find any cause for. In reading through this site, I remember reading that a lot of CC patients run unexplained fevers, so I'm guessing that I shouldn't be too concerned with it. As far as the nausea and vomiting, I don't know if this is cancer or stroke related. Hiccups are another one that he gets so often and sometimes leads to vomiting.
Going home will be a challenge we hadn't thought of until yesterday. I thought being hit with CC was a big blow but I never thought about the impact the stroke was going to have on the entire family. When we get home, Norbert will need 24/7 supervision. It will be mostly myself with our sons helping out when they can. Just when I thought things couldn't get worse, they do.

So, Norbert has had an internist, a cardiologist, a neurologist and an oncologist seeing him here while he's been here. Two of the four Dr's have mentioned hospice to me. I understand and appreciate the oncologist for telling me he wouldn't recommend chemo to a patient who barely has the strength to get out of bed, but how do we know that he won't recover quickly and regain much of his strength? And how do we know that he won't want to continue with the chemo? Maybe its just me, hoping and wanting him to be here by my side for years to come. But as I mentioned before, I would respect whatever decision he makes, no matter how heartbreaking. He's always been my rock and I can't imagine being without him. Although, I know deep down that everything will be OK.
Just one day at a time.....that's all I can handle right now.
Olga

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(80 replies, posted in Introductions!)

Thanks for the words of support, Lainy. And yes, the oncologists are aware. Whether they approve, I don't really care because no dr could do anything to help Norbert stop the dry cough that was keeping him up all night for the past year. It stopped with the hemp.  So we informed all his dr's of the hemp oil and none of them have objected. If it helps the CC, I guess that would be a bonus. But that has yet to be seen.
Olga

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(80 replies, posted in Introductions!)

Well, we were torn between chemo or not.
Norbert started chemo, gemzar/carboplatin on June 10, 2014. It was supposed to be two weeks on, one week off. After one round, we were looking forward to one one week off. That was the week of June 24th. The weekends after treatment were very hard on him so we resigned to the fact that the weekends would be days that we would have to take it easy and not do much.
Norbert has been taking hemp oil (Rick Simpson oil) since he's been diagnosed. When he first started taking it, it made him very loopy(slurred speech, unbalanced, very tired) sometimes lasting well into the next day. After a couple of months taking it every night, his body adjusted and he no longer had those affects. On June 25th, he started taking a hemp oil that we got from a different source. It was different in color but supposedly was more pure and was pharmaceutical grade. That's what we were told. It was supposed to be better than the stuff that he had taken before. I gave him the same dose of the new stuff as I had of the old stuff. That same night we received a phone call that his platelets were very low. He had an appt. with the oncologist on June 27th, so we didn't worry about it.
The next morning I did my usual, went to yoga then to work. At work, I received a text from one of our sons that I misread and didn't worry about. Later that day, he called me and told me that Norbert had fallen and just laid there. He heard him fall from another room, so he ran to him and  helped him to the bed where he fell asleep. He said he was acting just like he did when he first started taking hemp oil. I figured that the hemp oil must have been much more potent than what he was taking and that he would have to sleep it off. Again, I knew he had an appt with the Dr the next day so I didn't worry. It was our youngest sons 18th birthday and we had many family members (who didn't know about the cancer) coming over to celebrate. As family came over, our sons and I alternated between Norbert and the guests. I made the excuse that he didn't feel well.
The next morning, it took unusually long for Norbert to get ready for his noon appt. I chalked it off to the hemp oil and thought possibly the low platelet level. When we got to the Dr's office he decided to give him a platelet transfusion and put off chemo another week. We were at the hospital until early evening. When we got home, some neighbors (who knew about the cancer) cooked for us. Norbert was still hardly speaking and when he did, he struggled to get the words out and was still extremely slurred. I made a call to find out what I needed to feed him to get the hemp oil through his system because I still thought it was the hemp. I was told there no way the hemp oil was in his system 48 hours later. I then thought it had to be the low platelet level and figured the transfusion would make it better. Than the neighbors that were over mentioned that he looked like he may have had a stroke. That never occurred to me, but for the rest of the night it was in the back of my mind. 
The next morning I got him ready, which again took hours, and I took him to the hospital his cardiologist was out of (which is a different hospital than his oncologist is out of). There, they looked at him and immediately admitted him.  He had had a stroke to the right side of the brain that left his left side weakened. He was there from Saturday, June 28 to Tuesday, July 1st. While there, we decided to move oncology from the other hospital to this hospital to keep all of his doctors under the same roof. It dawned on me that the oncologist was only concerned about the cancer and I needed to have all his Dr's under the same roof for his best care overall. It was disturbing that he had spent 6 hours at the other hospital the day after the stroke and nobody there saw it.
After being released, he became very depressed. I have never seen my husband like that and it was breaking my heart. I was trying to do everything I could to distract him. We made plans to go to the lake house for the 4th of July weekend. He was at least looking forward to something. We started out on Thursday, July 3, headed north. We stopped at a store while my sister-in-law, who we were following, ran in to pick up a few things.  I had been holding his hand since we left the house. While waiting for her, Norbert asked me to squeeze his hand. I told him I had been squeezing it. He said he couldn't feel his left arm. I asked him for how long. He said for about an hour. I immediately took him back to the hospital where they once again immediately readmitted him. We're still here and don't know when they will allow him to go home. They're considering inpatient rehab. The oncologist that we will be seeing out of this hospital was a little too forward than I was prepared for. We will have to put chemo off until he regains strength. If he doesn't regain strength, than he may not be able to continue with chemo and we may have to look at the few options still available to him. It certainly wasn't what I wanted to hear, but by the same token I appreciated his frankness and telling me that he wouldn't recommend chemo if it was only going to make the remaining time miserable for him. I'm only hoping that he will make a nice recovery from the stroke so we can address the cancer.
We had been hiding Norbert's cancer from most except for a few close family and friends but now we were not going to be able to hide this. We ended up telling most people about the stroke. This worked to end some of the rumors that have been floating around for quite a while.
I haven't told anyone about the conversation with the oncologist yet. I'm hoping for a quick recovery from the stroke so I won't have to have that conversation with anyone.
I've learned to take one day at a time and just hope for the best. We'll see what tomorrow brings.

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(28 replies, posted in Introductions!)

Thanks Duke!!!
Right now, I feel like I'm hanging on for dear life!!
For now, Norbert has put off chemo but I believe he will end up doing it. All the positive information from this site has helped him lean more towards doing it....even if he did put it off for another week.
Thanks again!!
Olga

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(80 replies, posted in Introductions!)

Thanks everyone for all the encouraging words. Norbert is still torn between whether to do the chemo or not, so he decided to put it off for another week to think about it more. We were extremely disappointed with the responses to our questions from the oncologist. All we asked for was averages, but got absolutely nothing. He's hoping for more input from people on this site since you folks are in the same boat facing the same cancer he is. The chemo they want him to have is gemcitibine and carboplatin(paraplatin). Two weeks on, one week off, for three rounds, than scan to determine if it's working. Norbert did ask me to ask those of you that responded what stage each of you is in. I tried to look up the history of some of you and it was comforting when I told him that some of your cases were very similar to his. His biggest fear of chemo is getting sick when he feels very good right now. And if he does start it, but then decides he wants to stop, what's the chances that he'll get back to feeling as good as he currently feels?
Julie,
I found a thread where you wrote something about your H pylori theory......I was wondering what that theory was because while Norbert was going through all of the testing to figure out what was wrong with him, they found H pylori and ulcers.
That thread had something to do with a database being put together, which I was also confused about, but would like more info on.
Again, thanks to everyone.
Olga

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(80 replies, posted in Introductions!)

Norbert's supposed to start chemo Monday. I thought he all good with it but yesterday we went to see his cardiologist and after that visit, he started asking quesions and making comments. I don't know what to believe.....I hear good stories and bad stories about chemo. In a nutshell......he wants to know how much longer chemo will buy him.  We can't get any straight answers from the doctors. We get the....."nobody has a crystal ball"....issue, but at least an average would be appreciated to make our decision.  Tonight he showed that he's scared, but I'm not going to stand in his way of making a decision that he's comfortable with. I don't know what would be harder....seeing him in agony because of the chemo or saying a final goodbye to him.  He's considering not doing the chemo and I told him I would be OK with whatever he decided. He's been getting pains in his sides and he's wondering if its something related to the cancer. He asked me to post something asking about the pains related to the disease as it progresses. Any comments would be appreciated.

I'm so disappointed that no one taking hemp/cannabis oil has posted here to give actual stories. I understand that usually "if its too good to be true, it usually is". I get it.... And I also understand the politics behind it all. But in my husband's case, we were given a diagnosis on March 21, 2014, and no dr would give my husband the answers he was looking for, other than there was no cure, it was just a matter of time......but that was the magic question that no one could answer.  So when my sons came with the only glimmer of hope.....at least more hope than any Dr could offer us (especially the Mayo Clinic......a place that up until I took my husband there I held in high regard). So, what's wrong with grasping at the only glimmer of hope there is.!!!  Norbert at least can sleep peacefully, through the night, which he hasn't been able to in the past 9 months....and where he has been offered other pharmaceutical drugs... I don't understand why people accept the " side affects" more readily when they come from pharmaceutical Companies. I also get the politics behind it all, but that still doesn't stop me from wondering if its the hemp or those drugs that the drug companies and insurance companies are raking in tons of money that are the answers. Since the diagnosis, I've become very bitter toward the health care industry and God. I understand that its my problem and I'm the one that needs to deal with that....and I will...in time. But for now, I'm trying to make the best of the hand that's been dealt to us.

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(28 replies, posted in Introductions!)

Hi Duke,
Thanks for your response to my post. I read your post to my husband, Norbert yesterday. It made him feel so much better than he has felt in quite a while. He had me look up your info and read him your posts about yourself. For the first time, since he was diagnosed, I saw him brighten up. I saw the old Norbert, the one who will not give up so easily without a fight. I felt I owed you a huge THANK YOU!!!!
Best of luck to you with your treatment!!!

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(80 replies, posted in Introductions!)

So Norbert is in having the radiation embolization right now. Yesterday, I read him a few posts that made him feel better about his decision about doing the chemo.  I still have a hard time reading some of the posts without falling apart. I only read him the posts that give him hope or make him feel better about his decision.
I'm trying to understand the CA 19-9, so before he went back I had a nurse show me that in his chart. It just said it was <18 and normal range was 0-35 so his is in normal range. Does this sound right? Or should I be asking a different question? I also got his alk-phos level as 221 in March and 257 in April. Is that good? I know that level is above normal but nearly what I've seen within some of these posts. I now have access to his hospital chart online, which has a wealth of info, but it makes for a lot of questions.  I've always hated science, but now, I wish I would have paid better attention in school. HELP!!

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(80 replies, posted in Introductions!)

Thanks everyone for the words of wisdom. It all helps. I'm in the waiting room while Norbert has a port put in. We have actually gotten much support from the family that is aware of what's going on. That has been very comforting. 
Norbert is scheduled for radiation embolization on Friday. An unexpected death on the family last week and another expected death in the family this week has made life a bit difficult. I'm not sure Norbert's going to be up to going to the funeral services this week but I'm not going to worry about it. I need to do everything I can to make Norbert feel better about his decision to do the chemo. I'm not sure how to do that but I need to figure that out.
I need to know if anyone has any experience with hemp oil? The day after Norbert was diagnosed, our sons did research and after spending the last 9 months in agony because he couldn't sleep (dry cough, night sweats, fever, chills), he was finally able to sleep!!! And has been able to sleep since he started taking it!! Michigan has legalized medical marijuana and we both now have our medical marijuana cards. He only takes it at night to sleep.  In the morning, he needs 2 cups of coffee as opposed to his usual 1 cup, sometimes needs a third cup, but aside from that, no other side affects. It'll be interesting to hear your experiences.

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(80 replies, posted in Introductions!)

Hi,
My name is Olga. My husband's name is Norbert. He's 57, and on March 21, 2014, he was diagnosed with Cholangiocarcinoma. When the nurse practitioner was telling us on the phone, I had her spell it because neither one of us had ever heard of it.  She explained that it had metastisized to the liver and that the tumor was too large and too tangled between too many organs to try to do surgery. After  I fell apart, I did what I always do and went online to research it and its prognosis. The more I found, the bigger the pit in my stomach and throat grew.  It wasn't fair!! This man had lost 60 lbs. in the last 18 months by eating properly and drinking veggie/fruit smoothies. He had never in his life smoked, drank only socially during his 40's and had always tried to do the right thing for his health. We met with a team of Dr's and they explained that he had stage 4 CC and surgery wasn't an option. We went to the Mayo only to be very disappointed when they told my husband that he had 6 months if he did nothing. But my biggest questions came when the Mayo told us that there was no change from the first scan to the scan that they did and 2 weeks later we were at Henry Ford in Detroit and they were telling us that everything had grown. Also the Mayo told us that it had spread to the lymph nodes but Henry Ford told us that the only way to know would be to biopsy a lymph node.  So how do we know who to trust and believe? We have at this point agreed to do an enmbolization of the liver, which is all that he qualifies for. They have determined that embolization is not an option for the tumor so the Dr convinced Norbert that systemic chemo is the only option with embolization to reduce the size of the large tumor. After hearing from him since the beginning that he would not do systemic chemo I have to admit that I was glad he wasn't giving up and was willing to fight this as long as he could. Although, I'm not sure this is what he wants. When we were at the Mayo and we were told that it had spread to his lymph nodes. I broke down. He only looked at the nurse and said that he had only come here for his wife. That's when I knew he accepted the hand he had been dealt, but I couldn't accept it. Or at least I wasn't going to accept it as gracefully as he was going to accept it. I used to say that between my yoga in the morning and my wine at night I could handle everything in between. Unfortunately, I never seen the curve ball that was coming my way and I am still trying to recover from the blow that hit on March 21. He is scheduled for embolization on May 9, and chemo after that. I know he doesn't want to do the chemo, yet he has agreed to do it. Is it because he doesn't want to give up on life or is it because he wants to make me feel better about his decision?  I feel like I should be waking from this nightmare any minute, but unfortunately I wake up to the realization every day that I have to face what's coming. Very few people know the truth as of yet and any words of wisdom would be greatly appreciated now!!!