Dear Kim, our weekend did not happen. Bud spent the day in bed, sleeping mostly and unable to find relief for the terrible pain in his back. Even with the hospital bed, he is unable to find a comfortable position today. He was craving Wendy's Frosty and chili, so I went out and got him some dinner. I think he ate 2-3 bites and then had to stop due to the pain. I just feel so helpless. Sometimes the meds work, sometimes they don't.
Today, with his sister in my brother-in-law we went to do what I have been putting off for weeks. Funeral arrangements. It was the hardest thing I have ever done in my life........May the Lord forgive me...but it had to be done. Who else to do it. Tonight it is tough. Breathing is labored and thoughts are scattered. This and that on his mind, but some of it, rather scattered. So, the Lord knows what IS on Bud's mind and will help me with trying to sort it out. We played a hand of Rummy tonight, which we used to love when camping. He did well, but then tired out. I am tired too. Love you all, you are my refuge. Take care and hang in there....
Oh, my heart sank when I saw a posting from you and knew it meant you were at home. I was thinking about the two of you all day wondering if you were having a good time and then to find your posting was so disappointing. I am so sorry and I understand making funeral arrangments as months ago Stan and I went and picked a spot for Stan and myself. It was very hard to do and seemed so final even though Stan is not in hospice. I don't think you need to be forgiven for anything. Honestly, when my FIL passed away my MIL refused to plan ahead and oh what a stress of a mess we had trying to get everything completed in a couple of days when it was not necessary. You did the right thing Jan, don't beat yourself up over making arrangements, they are just arrangements.
Now you did make me laugh when you mentioned that Bud wanted Wendys Chili and a Frosty! You won't believe it, but I had to drive 4 miles one way to pick up a Chili and Frosty for Stan today too! He is struggling eating, he is eating but not as well as he has in the past. When I just read this I shared with him that Bud wanted the same thing and I honestly think that is the only smile that has come out of him today. But then he asked how Bud was doing and I had to be honest. He lost his smile then, but at least we got one out of him.
I won't lie I have tears as I re read your posting. I don't have the right words to take away your pain Jan. What words can take away that pain...none that I can think of, but know that even though I have never met you there is a connection so strong I feel for you and send prayers your way. I try to stay so positive for Stan, but see him just steps behind Bud if this chemo is not working. We had another day with no shower and no outing. His brother called and was speaking to me today and then he asked to speak to Stan and Stan said NO he did not want to speak to him. His brother was devasted and thinks it is because of me. I explained to him that Stan is very miserable and is very weak and saves his energy for what he wants to do and that I am not telling him not to speak to him. He then asked me if they can come tomorrow and I told them it is up to Stan on how he feels but he has mentioned he does not want company tomorrow. Then his brother chimes in, well then we will come see you and I told him No...he just does not get it! Also to give you some history his mom never calls and stops by every Sunday. (on their terms and schedule, never Stans) His brother also rarely calls and I think that this is bothering Stan. There are times Stan does not want to speak to me either and I respect that, but he always love his massages!
Sorry to hear Bud is having back pain...from what Stan tells me it is terrible! I pray Bud is comfortable and can still have some special times with you Jan.
Oh Jan, I am sorry I am rambling, but maybe my way of coping. I am so sad for you and cannot imagine the emotions you are experiencing at this time. I am so blessed so far not to hear the word Hospice in our house, but Stan spoke about not continuing with chemo on Nov. 13th so we will see.
Hugs My Friend,
I am tired so will keep this short. I am very sorry to hear that you and Bud did not get to go camping as I too had hoped you would be able to go.
As for funeral plans I guess I am very lucky as both my parents belong to the neptune society and will be cremated, they decided this many years ago and it has even been paid for for years. Neither really wants the burial at sea but rather would like their ashes divided among us and scattered in some place special to each of us like a flower garden.Being that gardening was my mom's favorite thing that is where she belongs in a garden of flowers. ( of course 10 years ago I had my dog cremated when she died and had planned to dump the ashes in the ocean as she and I took beach walks everyday: However the box I got the ashes in was so pretty that she has spent these past 10 yrs as a bookend on my shelves! So much for the beach!)
Kim and JanMarie....you two are such a comfort to me in these days. Kim, I had to laugh when I read about Stan's craving....LOL....must be in the water..
I know how you feel abut the company thing. I leave it up to Bud. Many times he has me answer the phone (land and cell) even when it's one of the kids. He just doesn't feel like talking. And sometimes, even having company over does not appeal to him. I always leave it up to him, that way no can say Jan would not let us see him. But when they come, they come for hours and that's more than enough even when he's well. Just never been much of a social butterfly...even with family. About the only one that he really likes to see for a prolonged period of time is his sister and her fiancee. They went ahead and camped yesterday along with the oldest daughter and his grandson. I think they had a good time....pot luck dinner in the big barn and the "haunted" hayride to the Selvin cemetery.
Let's hope today is better. During the night he got up and wanted to just quit, die. He said he had enough. Can one blame him? But, he made it through the night and we will see what today brings.
You have been on my mind so much today and worried about Bud after reading what he said last night. Oh, I don't blame them at all and I would never call them a quitter either! Cancer is brutal and one's body can only take so much and it starts wearing out. I just feel so helpless as I am sure you do too and don't even know what to say to them when they are like that. How was Bud's day? Did he eat??
Wow, that hayride sounds scary!
Oh, speaking of scary I woke up a little spooked this morning...I had a weird dream...my grandma and grandpa were saying Hi to me and then my FIL said hi to me and then I woke up and was rather spooked. I don't know what else I had been dreaming about but remember their faces.
Stan gave in today and told his mom and brother to stop by. He did not shower again since he has no energy. They as usual stayed too long and Stan had no interest to even speak to them. I feel terrible for my MIL since she really does not understand how sick Stan really is. Stan is such a good actor and lies when they are there. He refuses to tell her the pain he is in otherwise she panics and cries.
Anyway, I am rambling again! Off to get Anthoony in bed and sit with Stan. I hear him up right now. I pray Bud has a good night and you get some sleep too. Jan feel my big hugs and love coming your way!
Hi Kim, yesterday was not any better, as a matter of fact it was a very long heartbreaking day. Bud feels he's slipping away fast. He had me call all of the kids in yesterday and we gathered knowing what we were going to have to discuss. Basically, Bud just wanted to read his will to them and ask for their permission to go "home". They all promised they would look out for me always and not to worry because I will be taken care of. We all cried so much it's a wonder we didn't recreate the Sept 12th flood....
But, Bud was at peace with his decision. And we have made peace with knowing just how little time is left, and how precious each hour and minute is becoming..
The night was tough. Tossed and turned all night long, talking in his sleep, the pain was bad despite the Oxy. I need to speak with hospice today about his pain meds.....Bud knows that if they up the dosage he'll sleep all of the time, but I think he hopes he'll just drift away and not wake up. That's how he wants to go. I've told his kids that I have made the funeral arrangements, and honestly, two days later, I feel very much at peace with having done something that would be so much more difficult if having to be negotiated at his passing. I still can't believe how much funerals cost, even with a modest one. Overall, the infinite sadness I feel never leaves me, my thoughts always turning to how much I am going to miss that silly goof, and how I can make the most of what is left with him.
I need to pull up some spreadsheets and get some work off to the office before Bud wakes up. Might as well get that done, since sleep is not my friend tonight.
Kim, I know what you mean about letting things go. Nothing has as much meaning as being able to spend this time with our husbands. There will be time for the rest....later.
Love and hugs back to you. Tell Stan he is in my prayers and thoughts. I told Bud about his craving and got a giggle out of him. Maybe we should bring this up the ACS....Windy's is a cancer patient's friend!
Jan, I once again woke up early and could not sleep, tried reading but can not concentrate on the book so got on the internet and here I am. Reading your post and crying some tears for you and some for myself too.
I am so sorry to hear that Bud is slipping so fast. As I watch my mom slip each day I know how you must be feeling. There is a helpless feeling for us as there is not much we can do,but be there and watch it unfold.
My mom does get up, eats a bite of breakfast then spends the day going from her chair to the couch to her bed trying to get comfortable. She does drink some Ensure for lunch but that is it. I made her a drink from the World Health org. to help with dehydration that she is suppose to sip at during the day but she does not do a good job.
To be honest I think alot of her problems right now are related to dehydration as I see no outward signs of liver failure and being the liver is the only organ the cancer is in I would expect to be seeing that.
Dehydration shuts the kidneys down and makes people feel lifeless as toxins start building up in the blood and I think that may be what we are seeing here. It also causes an electrolyte imbalance that will effect the heart if not corrected. I am hoping the hospice doctor calls and comes today as we are suppose to see him early this week as maybe he can send her to the ER for some fluids( or have the hospice RN do it here if they can). She will not go if I suggest it as I am not a doctor! If she gets fluids and does not perk up then I will know this is just her body shutting down getting ready to die. I counted the reglan pills the doctor gave her on the 16th they are to be taken TID ( 3X/day) there were 60 and now there are 50 meaning despite her saying she is taking them she is not. This is so unlike my mom! I think she has told herself that she is ready to die since she gets no more chemo and she is not even going to try to hold on or do anything that may help.
I can understand wanting a fast death as it is no fun feeling like crap but in her case I think if this is all dehydration and we can get her hydrated that she would feel better and have some better days before liver failure sets in, Maybe I am wrong but I have seen dehydrated people perk up and go on after rehydration.
Dogs ( there are 4 my 2, my parents 2) are slowly coming in to see who is up and beg for some breakfast so I had better end for now, Just know I am right there with you holding your hand when you need it.
Jan, I am so saddened to see Bud going so fast. I know you don't want him to suffer, but I think it is good he met with all the family. I cannot imagine how hard that must have been. Please take care of yourself and stay well. I will keep you close to my heart along with JanMarie as her mom sounds as if she is going soon too if something does not change.
Sorry to hear your mom is letting go, stubborn layd, but determined in what she wants. (remember the story I wrote about my grandma reminds me of your mom) I honestly think if I was in their position I would not want it to drag out either, but I agree you hate for her to be dehydrated. Keep us posted and thinking of you making those cookies.
Stan's doctor visit this morning- The blood counts are perfect, no shots! We then questioned why he has not showered since Thursday and has stayed knocked down since last Thursday and even last week. If it was not for the football game I am sure he would not have gone anywhere. (actually he almost stayed home) Anyway, they told him he must not lay around all day and not let his body give in and to take a short walk up and down the street and to get out for lunch or stop by our business...just something they said, but not to lay around the way he has been. They explained his body will get use to that and will have no energy. But then we quesiton...how do we know that the cancer is not spreading even more and making him feel worse. I want to push him, but at the same time you hate for him to over do it if he is getting worse...what a mess. We will try this over the next couple of days and see how he does. As we all know with SCLC it spreads quickly once it has said enough is enough.
Ok, enough of my whining...look what the two of you are going thru at the time with hospice and knowing the time is so near. Thanks for listening and you two take care of yourselves. I have been thinking about Renea all weekend too....worry about how she is handling all of it and then there is Ron dealing with the loss of Becky...and then there is Pat who is such a strong lady.
As always in my thoughts and prayers,
Hope you Kim and JanMarie are having a good day...as good as can be expected. When hospice came yesterday, the nurse could not hear any air movement in the left lung at all. Basically, the tumors have taken it over...that explains why Bud struggles for air so badly. His oxygen level has been boosted to 5 liters. His Oxy to 60mg every 8 hrs, with liquid morphine incrased to 1-2ml every 4 hours for break-though pain as needed. Something new....liquid Diuladid (spelling?) in the nebulizer to help the lungs relax and allow for pain med to go directly into the lungs and ease the pain. Worked well for him last night. Also, changed his hospital bed mattress -- they ordered a wound-care mattress that's an air mattress that conforms to one's body and adjusts itself as movement takes place. I think between the new meds and the new mattress, last night Bud slept like a rock. And, I finally got a bit of sleep myself. I don't mean to complain, but lack of sleep over several days begins to wear me down and I get feeling blue at the drop of a dime. Today I went through a box of papers that a salvaged from the old house. It had gotten wet so most of it was garbage. But in the midst of it, I found a copy of our marriage certificate - a bit moldy but there. Then it dawned on me that the original was in the fire-proof filing cabinet in the basement of the old house. We thought of fire, never of flooding. And BAM, here came the tears. So, the moldy copy stays.
Still have not found a permanent home, but with Bud in the condition he is in, I don't have even the desire to go looking - and that's only if someone is here with him. Our oldest daughter (my step) is coming today to spend some time with him, so I'll take the opportunity to go the book store, grocery store and possibly check out a place or two....Maybe I'll buy Bud a long stem rose or something....I miss the old him so much. It just tears my heart out to see him like this. This is just a body anymore, my husband slipped away somewhere along the line. Maybe I can get him to play a hand of Rummy with me later on. We played one hand on Sat evening and it wore him out.
JanMarie, I know the dehydration issue well. That's exactly what Bud is going through but I cannot force the liquids down his throat, he just gest very upset with me when I push for stuff. Well, he's up...need to get going.
Take care everyone and I send love and hugs and a ton of prayers....
Good Morning to you too Jan,
Happy to her they got some things cleared up with Bud so he can sleep better and you too. Oh, don't complain about not sleeping, important for you to get your sleep! It appears Bud's cancer really spread fast after he was released from the hospital. It is amazing since it is NSLC and not the SCLC, but guess once they get control of the body they take over quickly. I feel for you Jan and hate to think of the pain and then seeing the marriage certificate...a tough one. Good his daughter will come visit so you can run out for a bit. I always feel terrible when I have to run errands and leave Stan behind, but I do it when he sleeps. (which seems to be more and more) I will keep you in my thoughts and prayers. You stay strong. I hope Bud can have a better day since he slept better.
Dear Kim, the guilt I feel when I leave even for a few minutes is huge. But, I did go out and looked for places to stay...think I actually found one. Then went to bookstore and then the craft shop. My stepson is having his first child around Dec 30th so I bought yarn to crochet a baby blanket with. I figured it would be a good way to keep busy while sitting beside him, either in the room or livingroom. Today he gave me a real, genuine hug, not just a pat and it was the first one since oh....probably two weeks. His confusion mounts. The VNA nurse that came here today said it sounds like the cancer has gone to the brain. Her husband died of a brain tumor at 28 and she was 27 with a 14 month old son. So, see God does bring people along during our struggles to help us. She said her husband did the same thing...and the body twitching....if the tumor is laying on a part that controls the motor skills...that might explain him not being able to wield a pen and make any kind of writing or numbers. They said that once the cancer goes to the spinal column, it spreads really quick and usually upward....to the brain. Today, his two oldest kids and their companions, and my son Kyle and his girlfriend came to spend time with him. This allowed me time to go out and take care of some pressing business and also to breathe in some fresh air. When I came back, Bud was sitting in the livingroom watching TV...but his mind was elsewhere...he kept talking about that game show on TV and how they were swapping out the gifts and stuff...well, there was a cartoon on.....so, the others saw what I have been seeing every day....maybe it was a good thing since when his oldest daughter got ready to leave, she began to cry and gave my a huge hug, kissed me on the cheek, told me she loved me, and that I was doing a good job. That validation meant the world to me. Kyle left in tears and maybe, just maybe, some of this is sinking in. We can always hope.
I am so tired, I have been crocheting all evening while the kids are out trick'o treating, but the doorbell and the knocking, (and Bug's barking along with it) are not helping Bud at all. So, I'm turning off the porch light and calling it a night.
Good night ya'll and take care. Love, peace, prayers and lots of hugs...
Oh, how special the family is really rallying behind you and reading that your son has appeared might be a break thru...wonderful. What a tough time Bud is having and how heartbreaking. What a wonderful idea to crochet a blanket for the baby.
If infact the cancer has gone to his brain remember that he can go into coma at anytime. (not to scare you) My FIL went into coma and so did my dad. I spoke to my dad a few hours before he slipped into coma and so glad I made that last phone call. I know it must be so scary for you and I am just not the best with words.
I pray God gives you strength and somehow a way for you to deal with all of this Jan.
Night my friend....so sad for you....