mlepp0416
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You all make me laugh!
I know that this was just another bump in the road, but I also think that maybe this may help others out there who are facing similar bumps!
Lainy, In my spare time I take care of Tom’s every need, from helping him shower and dress, making his meals, getting him his meds, etc, driving him to /from doc appts, etc (Tomorrow it’s in for a Blood Tranfusion) but at least there I can sit and read – basically doing nothing while he gets his ‘new’ blood, hopefully from a 25 year old!
Thank heavens for FMLA!
Then I will work a few hours after we are home from the hospital.
Humm, let’s see, carry in the wood for the fireplace (at least 2x a day), reset the furnace and the gas fireplace so they would work after getting the gas line repaired (I did NOT repair the gas line) and all the other chores that go along with being a working housewife. Thank goodness there is no snow on the ground or I’d also be doing the snowblowing! Oh Wait! I have a nephew living here with us and HE can do the snowblowing!!! But I know that sometimes it will fall to me….did I mention laundry, shopping for food, cooking that food, every day something different cause Tom’s taste is way off from what it once was!
Anyway you all know the drill that comes with being a caretaker. It’s a sometimes thankless job but “someone has to do it” and since I married for better or worse, I’m up for the challenge…besides, I know that Tom really deep down appreciates what I do for him every day! And I love him so that’s all that counts, right?
So, go with God and KEEP KICKIN’ THAT cancer!
Margaret
Thanks everyone for your input….I’m taking all of your suggestions and going to the ‘table’ with them.
Tom was very seldom irratiable, crabby or grouchy prior to his IV Chemo that is why I think that the Chemo has something to do with it.
Cherboug is right in that it can be overwhelming to have even just one more person to care for. And in Wisconsin, the big deer hunt started on Saturday, so it wasn’t just the 9 year old grandson that came over to spend the night, either, it’s just that the 9 year old on top of a Nephew, a Son, another Grandson (11) and a grand-daughter (16) and the nephew that lives with us. So in all, including Tom and I, I had 8 people that I had to cook and clean for not to mention washing all the towels that they used for showers, getting blankets and pillows out for them to use for sleeping, etc.
It was just so over-whelming for me. I work a full 40 hours week, and on Friday night all I want to do is unwind and spend quality time with Tom.
I did lay down some rules this past weekend! Everyone had to pick up after themselves, rinse their dishes and put them in the dishwasher, and they had to leave the bathroom in the same condition that they found it in before they used it.
And yes, there have been times during the night when I DO have to take Tom into the ER, and if that happens, what do I do? I’d have no choice except to take the grandchild with us even if it it 2am! Or, leave the child sleep and call their parents to come get him.
So, from now on I think I want to limit the grandchildren visits to ‘day visits’ only. But part of me thinks that may not work…and yes, Tom does enjoy the grandchildren visits, but he does not have to ‘care’ for them, it falls to me.
I do try to focus on only the things that I can accomplish, and because I thought we had a ‘free’ weekend, my focus was going to be on cleaning the house from end to end, getting ready for the holidays. I did still get all my cleaning done, even with the two extra grandchildren who stayed here while the boys went hunting.
Tom is and has always been my main focus since he has gotten sick. Housework be damned, those dust bunnies will still be there next week. Additionally, I have also been painting the entire house (inside) and perhaps this also adds to my frustration. Tom wanted the house redone for me before he ‘leaves’…..so I’m doing it for him, not for myself. The term ‘burning the candle at both ends’ comes to my mind….
Well, my lunch break is done for the day, so back to work I go.
Thanks for listening!
Margaret
Thank you Lainy. Yes, I agree that Tom should be on an anti-depressants but he ‘refuses’ to take it. Maybe I’ll have to start sneaking it into his evening malts that he likes so much. But so far I have to add his medication that makes him want to eat, plus his huge Potassium pills and not so sure about adding another medication to that, but I will find a way.
Yes, I do manage to ‘get away’ once in a while. It would be so much easier if I got some support from his two children. The daughter is pretty good, but for the past 4 friday nights, her 9 year old son ‘wants’ to come spend the night at Gma and Papa’s house. That has added to the problem. Under normal circumstances I would not mind, but 4 weekends in a row? The daughter just does not understand that Tom and I need time for us too! Alone, with no grandchildren. I have spoken to her and I know that he will not be coming next friday!
I do have to admit, that this is so frustrating at times. I’d never ‘leave’ him of course, but sometimes I have to show my hand! And I understand his frustration at not being able to do the things he once did, knowing that he has to depend upon me for everything. And then his nephews death I think hit him really close to home.
Lunch with a friend? On Friday when he came home from Chemo and announced that the 9 year old grandson was staying for the weekend, my neighbor (we walk together every morning and evening) and she is my confidant, well, she and I ran away and went out for dinner leaving Tom and Tristian (grandson) home ! So yes, I do get away just not as much as I probably need. We won’t kill each other yet though, even if at times I want to! Ha!
Thanks for listening…..and I’m thinking of a creative way to get that anti-depressant into him !!!! And I have been talking to him today about my role as his wife and caretaker and how having kids around every weekend is making my job harder!
Hugs,
MargaretAndie: My husband Tom also has high bilirubin level, his highest was 24.9 which is (I belive) 2490? Currently his is at 9 or 900 and he has never experience any of the itching or brain confusion that so many others experience. His external drain accumulates about 100ml every 24 hours.
So, just be thankful that your dad does not experience any of the itching as it can be unbearable so I hear. As long as he has some color to his stools it does mean that some bile is getting through. When/if the stool turns white (no color) then there is no bile getting through into the intestine.
Feel free to ask any questions if you need more detailed info!
Go with God, and KEEP KICKIN’ THAT cancer.
Margaret
Varun: So sorry to hear about your loss of you Mom. She is at peace now and will live on in your hearts and minds. Please come back to this site often as you work through your grieving process. I know that for some people, becoming a ‘mentor’ and adding posts for others can be healing. That is one of the reasons why I am a frequent visitor to this site. I have learned so much from others and I’m certain that others have learned from me!
Each CC patient presents with their own unique issues but at one time or another it seems like they all experience the same issues, so when we can all learn and teach one another, it helps us all not feel so alone.
Hugs and my thoughts and prayers are with you and your family.
Margaret
David: Go and get some pear juice and drink a glass of that every day! You have to look in the baby section of the grocery store. My husband Tom has the same bathroom issues and has tried everything from Miralax (Prescription), Milk of Mag. etc and the Pear juice has him going potty every day now.
When my grand-daughter had potty issues as a child that is the only thing that worked for her too.
Margaret
GOOD NEWS again today! Tom’s bilirubin level is down to 9! At last bloodwork it had come down to 17 – so it’s even better this time! His hemogloblin is also low, down to 9. His onc wanted him to have a blood transfusion after chemo today but he declined, so we go in tomorrow at 8am for his one unit of red blood cells. His onc does not want to wait until wednesday, so off we go in the am. I will of course eat a great breakfast at the hospital as they have a great cafeteria there and make the best omlets!
And he has gained weight! Yea for all the malts, poached eggs, pancakes, etc that I have been making him. He is up to 117 lbs! That is amazing! His onc is well pleased with his weight gain and so am I!
So, he will have a scan done in two weeks (I think) to see where those nasty little tumors are at, and also the met to the pelvic area. His onc is espically interested in that mass in the pelvic area to see if it has decreased in size. At this point she is not overly concerned with the 5 small tumors in the liver, only that mass.
So we are KICKIN’ that cancer big time and right now, I’m rooting for Tom to still be here in Feb. so we can celebrate our 10th wedding anniversary! My son and his wife got married 15 minutes after Tom and I did, so we’re hoping to be able to celebrate together next year just as we have done for the past nine years.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
AWESOME news Kris! So happy that you are finally back at home with your kitties, and Hans too of course! Alas, our cat Bear has had to go take a vacation while Tom is receiving his IV chemo! But I do go to my youngest daughters house about 1x a week to visit him. He still remembers who I am and comes to snuggle and purr to me.
Enjoy your time at home and give those kitties and Hans extra hugs!
Margaret
Pear Juice from the baby section in the grocery store works awesome for that bloated full feeling and relieves constipation! Tom has tried everything available, even prescription’s and nothing worked. One glass of pear juice and we was going to the bathroom, now he drinks it every day and has had no further issues with constipation!
Margaret
Lainy: So glad to hear that T got a shower! Our neighbor just brought a shower chair over to Tom to use since he is getting weaker and is afraid of falling in the shower. Now he does not have to wait for me to help him and watch over him while he showers!
I generally do the big Thanksgiving meal at our house, but this year we are going to Tom’s daughters house, so lucky me, I only have to make 2 Banana Cream pies! I think I’ll be lost cause I’ve made Thanksgiving Dinner for the past 30 years or so! But it will also be great to just enjoy the meal with none of the work!
I’m glad to hear that T is enjoying his new ‘bedroom’ and using his walker! We don’t need him falling on us!
Enjoy your Thanksgiving!
Hugs,
MargaretI’m adding a few more things that I hate about cc from my original post.
I hate that CC has turned my once robust husband Tom into the original thin man.
I hate that I can see every one of his bones in his body, from his ribs, to his spine to his very thin thigh bones. I hate it that his butt has gone away cause he is so thin that he has no fat on his butt and the skin just hangs there.
I hate that he can no longer eat the food he once loved and and most of all I hate knowing that sometime in the near future he will not be here with me.
I hate knowing that he knows that he will not be here and that he is planning my life without him, by buying household items for the house. I hate it that he keeps saying “I want your house to be awesome for when I’m not here”
I hate the fact that his doctors cannot help him more.
There! That felt good.
Margaret
Pam: My thoughts and prayers are with you and your family during your time of loss. Keep your daddy and your memories of him throughout your life close to your heart. Your memories will keep his spirit close to you and your family. Celebrate his life!
I lost my father due to cancer when I was just 25 years old due to pancreatic cancer. I’m now 58 years old and looking back, his death was one of the hardest things I’ve ever had to cope with. Memories of him are all that I have left, but those memories are so wonderful – I share them with my children and my grandchildren, so he still lives on with us through our memories.
Go with God,
MargaretKMWMSM: When my husband Tom was in the hospital he was kinda like your hubby. I took the ‘abuse’ up to a point and then I finally stood up and and picked up my purse and said “I love you, but I am your wife and I am here because I love you. I don’t have to be here, and frankly I don’t like your attitude. I’m sorry you have cancer, I know you are hurting but you have to want to help yourself and get better and you can’t do it laying in bed feeling sorry for yourself. I’m leaving now and maybe I will come back and maybe I won’t. If I do come back I hope you are in a better frame of mind and maybe, just maybe you better rethink your situation and think about what you can do to help yourself.”
Then I left the room, went out to my car and drove to the place where I was staying, crying all the way of course. I was at the edge of exhaustion, so I showered, took a nap, grabbed something to eat and then went back to the hospital. When I walked back into his room about 3 hours later, he was very happy to see me. He thought I’d left and went back home to Green Bay.
He was apologizing left and right cause he knew he was wrong to take all his frustrations out on me. (But people do that to the ones they love) And let me tell you it was just the kind of ‘talk’ that he needed. He then started doing his walking and started eating better cause he knew that in order to get out of the hospital only HE could make the changes that needed to be made.
Sometimes we as wives just need to stomp our foot down and say ‘enough is enough’ and let the man know that we have reached our breaking point too!
Looking at it from his perspective though, he is probably hurting, scared, frustrated and you are the closest person to him right now and he feels ‘comfortable’ taking it out on you! Therefore it’s up to you to put a stop to it.
Having said that though, it certainly would not hurt to get the Social Worker, or even a mental health professional to come in and talk to your husband. His actions (or reaction) to a diagnosis of cancer and undergoing a huge surgery is normal. I’m certain that others have gone through similar situations as well. At one point Tom did talk to a mental health professional and it did help somewhat.
We still have some rough patches even now, but whenever necessary I stomp my foot and do the wifely talk and that generally helps. He knows that I am his biggest advocate and he knows that without me by his side, he would be in a nursing home.
I hope you can ride this one out. Don’t give up on him, he is in a tough situation and don’t let anyone tell you otherwise! Sometimes those husbands are just like the kids and you need to treat them as such when he ‘misbehaves’!
Go with God, hugs!
Margaret
Linda: I hope that when you get to Mayo you are not assigned the same liver specialist that was assigned to my husband Tom. (Dr. Dunn) He had no compassion what so ever and said that getting his external drain internalized was ‘cosmetic at best’ and he did not understand at all why he wanted an internal drain. During our first appointment with him, he came into the room, introduced himself, then spent 20 minutes searching through the records, and kept saying “Jesus”. He asked where we were from and stated “I cannot believe that you drove here from Green Bay, Wisconsin” (It’s about an 8 hour drive)….after 20 minutes I finally asked him what he was searching for and he said “I’m trying to find when and where he had the Whipple Procedure preformed” to which I said “He did not have a Whipple, he had a left liver lobe resection at the Milwaukee VA Hospital on June 16, 2008, with Dr. Thersa Quinn” He looked at me and said “Are you a doctor?”……”No, I’m his wife and I know what was done and when, I’m very involved in his care”.
Luckily the Interventional Radiologist thought differently. Although he tried he was unsuccessful but after getting the pre tumor scans he was willing to try again. After our 2nd trip to Mayo, the IR was still unable to internalize the stent. But at lease we tried, else I would have spent the rest of my life wondering “What If”
So although our trips to Mayo were unsuccesful, I would highly advise Mayo Clinic to anyone whose local doctors cannot figure it out, because they will give it their best shot! The way we figured it was if Mayo could not get the external drain internalized then no one would be able to. Apparently Tom’s new tumor plus the radiation, somehow destroyed the bile duct. So worse case scenario, he has the external drain for the remainder of his life. Things could be worse, right?
And as far as the Bon Jovi concert, I’m kinds leaning towards what Lainy says – I know how much the drive to Mayo tired my poor Tom out and if I’d tried to fit in a concert too, well, I think that would have been just too much for him to handle. It’s amazing how much just riding in a car as a passenger can tire him out. I’m thinking that you just need to get to Mayo, veg in the hotel room, maybe do the hot tub thing, eat a good meal the evening before (cause you won’t be eating breakfast as you will most likely need labs)…..
Hope your trip is a successful one! Did they tell you to plan on staying at least 1 to 3 days?
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
David: My husband Tom has had a ‘reoccurance’ some 18 months or so after his initial resection in June 2008. In Dec. ’09 they gave him 6 months. We have started our 12th month of life since that prognosis…..so just goes to show that those oncologists don’t know everything, least of all when one’s “time is up”
You are right about the ‘bump in the road’ of this journey – we have hit many of those bumps and we just keep plugging along. No one has an expiration date stamped on their butt!
Prayers are coming your way from Wisconsin!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
