richnkim

Rich passed away yesterday afternoon, fighting this cancer was so hard on him and dying was no different. I had prayed when the time came he could go peacefully but, that did not happen. The last few days he was so agitated and no amount of meds could calm him down he kept saying “I’ve gotta go” and trying to get out of the bed and the labored breathing was so hard to watch. Nathan and I have lost a huge part of ourselves when we lost him, there’s a hole inside that can’t be filled and it hurts like hell but, I keep reminding myself and our son that he’s no longer in pain and we now have our own special angel in Heaven watching over us but, it still HURTS!

I want to thank everyone here for the help and info that this site has provided us with and I wish everyone effective treatments and a long happy life.

Today Rich went into surgery to have a drain put in so when he comes home I can do it instead of going back to the hospital every few days, they got off another 6 liters today and it went well.  He was suppose to come home today but again I noticed him not being himself at first they thought it was because of the morphine so I asked for another ammonia test and it came back even higher than when I first brought him in. He just can’t catch a break here. They increased his meds for it and then tomorrow they will test again and if all is fine he can come home. His Dr said these ammonia levels are going to be hard to keep under control that there will come a time when the meds will not be able to keep up because the liver is failing so fast so when that time comes they will stop that med and just increase his pain meds to keep him comfortable.  He’s still in a lot of pain, one minute he’s fine then the next he’s double over in pain so trying to get the pain meds figured out is beginning to be a struggle but I promised him if there is nothing else I can do for him I will not let him lie there in pain!

Palliative Care nurse came in today and we agreed that Hospice Care would be our best way to go. With Palliative Care they do not come to the house to check on him, get his meds and are not on call 24/7, they are more like the person I would call at the Dr’s office and get advice if I had a problem or make appts for us, like she said she would of been the person we needed before all this happened now we are beyond what they can provide, sure wish someone would of told us about them before this I sure could of used their helped.

My biggest concern now is trying to get him home, he wants to come home so bad and Nathan and I are lost at home without him, neither one of us have a had a good nights sleep since he went in the hospital.

This is not how I wanted our summer to end and how I wanted Nathan to start his school year. Nathan is afraid Rich won’t be able to make it next Wed to his school for open house, our town just built a new Junior High School for grades 6 thru 8th and Nathan wants Rich to especially see their new Band room and uniforms and his locker this is the first year he will have a locker(I guess it’s a big deal to have a locker!) I’m praying he will at least feel up to the tour and then I’ll take him home and I’ll go back up for all the meetings and putting school supplies away.

Have a good weekend everyone not to many summer days left and snow will be here soon for us.

Since doing the wash out period from this trial Rich has been having a hard time. Yesterday he went in to have the ascites drained from his stomach, they could only get 2 liters off because the tube kept getting clogged so they said we’ll be seeing you in a few days to try to get the rest. This fluid was very painful for him with his stomach so extended. I had noticed for like the last 4 to 5 days he seemed a little confused, after coming home from getting the ascites drained he was REALLY confused, talking like he was having a conversation with someone, acting like he was hammering something, dropping his glasses of milk and juice then he started to fall one time he hit the oven, the other he was standing up and just fell backwards hitting his head on our ceramic floor in the kitchen, that one left a huge goose egg on his head, he was up all night walking around talking. Took him to the ER today and they admitted him did a CT Scan and nothing wrong with his head from falling but, his ammonia levels where 3 times to high, I was thinking that might be the problem but, at times he was lucid so I thought he could be the morphine they just put him on.

He is so mad at me now for taking him to the ER. They have him in a bed with a alarm and will have a CNA sit in his room all night. Bad thing is tomorrow we were suppose to be going to Mayo for the new lung and liver biopsy and start the TAS102 trial. I’m not even sure he could go on the trial now because as of this morning his eyes and skin are yellow. He has lost like 50 pounds in the last 2 months, his collar bones are sticking out his legs look like toothpicks and his once muscular arms are smaller than our 11 year olds. He’s wasting away before our eyes.

So it gets me to wondering if he should even try another trial, as I look back over the last year and half with all the chemo and 2 clinical trials was it all worth it? Yes it gave us time together they said he had 3 months to live but, each one of these treatments had such horrible side effects for him that he was in pain most of the time and to weak to do the things he liked he spent most of that time drugged up to control the pain and slept a lot. Would it of been better to take no treatments and have a few great months than do them and feel like shit for a year and half? The doctor asked me tonight what our plans were going forward and I said the trial and he said there are doctors who will always have a treatment for you but when is enough-enough? Not sure what I’m gonna do about that statement part of me says I can’t stand to see him in pain anymore but another part says I can’t stand to lose him. He has said right from the beginning he will do whatever I want so,  if I say to him it’s been “enough” isn’t that just saying I don’t want you anymore, I have no more hope for you? I think it’s gonna be a long week.

Rich has been taken off this trial. Recent scans showed new growth in a vertebrae, lymph nodes around his heart and the lining of his stomach also some new ones in his lungs and on the liver, but the original tumors on his liver and in his lungs still shrunk. So his doctors at Mayo want him to start a new trial TAS102 after a 3 week wash-out period, but before he does this they want a biopsy of the new ones in his lungs and on the liver. They will send those to Tempus Labs he already had a liver tumor biopsy sent to Foundation One which found the FGFR mutation. The doctors said this lab(Tempus) test for more mutations and for new immunotherapy drugs than Foundation One does, also they will be testing new drugs on the tumor biopsy itself at their Mayo lab. Doctors are thinking maybe these new tumors have a different mutation than the FGFR since the original tumors still shrunk and these grew.

I am  worried about the lung biopsy because people have said it hurt a lot, he’s never a had one before because the tumors he’s had before were too small to biopsy but these new ones are big enough.

These scans results came as a shock to us he has been feeling good even working in his shop restoring a car for our son to have when he turns 16. Hoping the next 3 weeks aren’t hard on him, whenever he’s not on a treatment he gets so sick and in so much pain quickly that I worry by the time the 3 weeks are up he’ll be in no shape to start a new trial.

Rich is back on the trial now after his week break. They reduced the drug to 16mg from 20mg. The bone pain and his hands are better and all labs today came back fine. The only thing is he lost 16 pounds in just a week, the Dr said some of it could have been water weight. He says food doesn’t taste right, either too salty, or like vinegar, I made him a chocolate malt and he said that tasted like dirt. This is the first time he has ever lost weight, he didn’t on the other trial or even while he was chemo, so it’s got me worried that something else might be going on. Will have to look into the recipe books this weekend to find something he’ll eat. Hope everyone has a good weekend and Happy Mother’s Day to all the moms out there!

Rich went to Mayo again today for his check-up and they have put him on a 1 week break. His phos levels, creatine and alk phosphatase are way to high. They said after the week break if everything is back to normal they will reduce the drug from 20mg to 16mg.

He is in so much pain now with a lot of bone pain and the hand and foot syndrome has gotten so much worse. He’s been using all sorts of creams and wearing socks and gloves to bed with the creams on but, nothing seems to get ahead of it, his finger tips look as if they have been burnt off and very painful.

They also talked to him about how much muscle mass he has lost, he says everything tastes too salty or sour.  Doesn’t want to eat anymore, has a few mouth sores but the Drs think with the dose reduction they should go away quickly. Wish I could find something that really tastes good to him, hard to make meals for someone who has no interest in eating and I’m a good cook (or that’s what he’s told me the last 35 years of marriage) all the foods he’s liked before now make his stomach turn.

At least spring is finally here and we can start planting our garden maybe home grown fresh veggies will entice his appetite.