sadwife

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

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

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,

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

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

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

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