12.22.15
We had a family viewing today. As always it was filled with family drama. Jimmy's mom, dad and sister never said a word to me about how sorry they were nor did his mom or sister ever apologize to Jimmy or I (which is what he wanted) about what they did at our house a couple of weeks ago. However, I am not surprised and the level of self-absorption still boggles my mind. With no prior warning, Jimmy's ex-wife and other kids showed up today...invited by Jimmy's mom no less. I told the funeral director that the ex was not invited and she needed to leave. Jimmy and I had talked about just this situation and he said he did not want her there. The ex-wife wouldn't leave so the funeral home had to call the police. As always, Jimmy's dad and other family members went out to see how the ex-wife was doing...never mind all of the crap she put Jimmy through over the years with the kids. After the ex left, Jimmy's daughter called me an f'in bitch and proceeded to try to go in and see Jimmy. I then told the funeral director that she nor her brother (after the watch incident) would be allowed in to see Jimmy. The daughter told me on her way out of the funeral home that I should be glad the police were there because she was going to f'in kill me. His daughter has seen him once in nearly 10 years and this is how she acted. Jimmy was so non-confrontational in his life but his family's drama constantly surrounded him and it was something he never liked or wanted to be a part of at all. I finally did let Jimmy's other kids see him because I know Jimmy would have wanted that. My loyalty is and has always been to Jimmy and, even if I didn't like it, I know it was the right thing to do for him. I did feel somewhat bad for hurting his son though. He had really tried to make an effort to have a relationship with Jimmy in the last several months. I am sorry I hurt him and would like to make things right with him. This is all so pathetic but sadly, not unexpected. The lack of respect for Jimmy is unbelievable and the fact that all of this happened in front of Logan is heartbreaking. This is truly the epitome of the life I have lived with Jimmy's family in the nearly 20 years we were together.
My new mantra is "just a few more weeks". Once Logan and I move, we will no longer have to deal with any of this drama.
Today is also Logan's birthday. I wish that I could have changed the circumstances for his turning 13. Jimmy made me promise that I would try to make his birthday special even if he wasn't here to celebrate it. Jimmy had written a birthday card to Logan and I am so happy he did. Logan really needed to hear from Jimmy today. Logan cried but was happy at the same time. I took Logan out to lunch and the servers all sang to him and then we walked around the mall. I think just being around people made it a more happy occasion for him. Later that evening, Logan's best friend came over to bring him a card and a birthday cupcake. We sang happy birthday and the day ended on a very positive note.
12.23.15
I finally got some sleep last night but in the middle of the night I woke up and heard Jimmy saying "Hey Hon" to me. It was upsetting and comforting at the same time. Waking up later this morning was hard because it was painfully real that Jimmy was no longer here. I miss him so much already. I miss touching him, kissing him and just hearing his voice.
To add another and, hopefully, final piece to the family drama, Logan told me that Jimmy's daughter had messaged Jimmy on his Facebook page and the message was not very nice. The message was written the day before Jimmy died. Here's what she said...
"Susan probably has a hold of your accounts. I wish you never met her. She has done nothing but torn you away from your family. This is why I never wanted to be around. You chose your life. I'm sorry you didn't choose me and jimmy. I'm sorry you chose Susan. I read her blog and the things she says are absolutely disgusting. She is trying to blame jimmy of stealing.How dare she. Jimmy is not like that and would never do that. After all the years of not being in his life and all he wanted was a father and you let her walk all over you and everyone else. I hope your happy. I have and will always be there for my family more than you ever were. I can't believe you ever really loved us when you let someone like Susan come between us. She is the most sadistic disgusting person I have ever encountered. I feel bad for you dad. I loved you and we could've been something. I pray for you every day."
If I had seen this before the family viewing, she would definitely not have been allowed to see Jimmy yesterday. I don't care what she says about me but she clearly never had any affection for Jimmy and only wanted to hurt him while he was so sick. The truth of the matter is that Jimmy didn't choose me over them. He met me long after he was separated from their mother and his life with her was over. He knew he never loved her and that marrying her was a mistake. He told me so many times that life with me was what he had always wanted even before he met me. I tried on so many occasions to welcome those kids into our life and to be amicable to their mother be she wouldn't let that happen. She had the daughter literally spit in my face after only a couple of times of meeting me. She also had the daughter, at 6 years old, leave a message on Jimmy's answering machine calling me a "bitch". Over the years, Jimmy just wanted to be dad to those kids but was not allowed to do so. The ex-wife hid them from him for months at a time and tried to have him arrested on more than one occasion when he showed up at her house to pick up the kids. When Logan was born, she told the son that Jimmy didn't need him anymore because he had another son now. There are so many things that happened over the years but it isn't worth my time and effort to list any more of them. She is literally the ex-wife from hell that got and still gets great joy from poisoning her children against Jimmy. Jimmy has been gone for only 2 days and I have already heard that she's bad-mouthing him to people. What a piece of trash...there's a special place in hell for her I'm sure.
I do want the daughter to know that she doesn't have the satisfaction she thought she had for writing that message to Jimmy. Thankfully, he never saw it. He would have been so disappointed in the bitter and disrespectful person she has become. She should also know that Jimmy never really thought she was his biological daughter. He accepted her as his daughter but always had doubts given the lifestyle her mother had before she met him. Maybe that's the real reason they never had a relationship.
As far as the watch incident goes, Jimmy did return the watch along with a note the evening on the day that Jimmy died. I was home but he didn't knock on the door. Here's the note:
While I still want to make things right because I truly believe he meant to keep the watch. Why would he have taken it in the first place if he didn't mean to keep it? He never contacted me after my text message to him two weeks ago and he only returned it after I posted about it in my blog. Not the least of which he didn't give it back to me in person. While I really do think he meant to keep the watch, I also think that maybe he just wanted something else of Jimmy's. I am still willing to give him something else if he wants it. He deserves it. He made an honest effort to come back into Jimmy's life and I know Jimmy appreciated that. Jimmy loved him very much.
Well, enough of that negativity.
Logan and I went to see the movie Creed today. Spoiler Alert ahead in case you haven't seen the movie. While the movie was really good, part of the storyline was that Rocky has cancer and they showed him going through chemo treatments, getting sick and losing his hair and, in Philadelphia of all places. For those of you who may not know, that's where we live and where the hospitals are that Jimmy was treated in. I lost it in the movie theater. If I had known that this was part of the movie, I would have definitely waited to see it.
Tonight was a really tough night. I couldn't seem to stop crying. All I want is to be able to see Jimmy and to talk to him. I want to hold him and comfort him. I miss his physical presence. It feels so empty in the house. Even though he was in the hospital a lot in the past 3 years, and for days at a time, I know this time is different. He's not coming home.
Much love,
Susan
xoxo
Our family's journey down the road called Cancer. My 46 year old, healthy husband, was diagnosed in February 2013 with an undifferentiated pleomorphic, high-grade sarcoma, a rare tumor, in his left leg. This is our story........................NOTE: If you are a new reader, please note that the blog is in chronological order starting with the newest post first. You may scroll down to read earlier posts or go to the blog archive.
Saturday, December 26, 2015
Friday, December 25, 2015
Jimmy's Obituary
Obituary for James Kulick, Jr.
James L. Kulick, Jr. “Jimmy” of Warrington died peacefully at home surrounded by his wife and son on Monday December 21, 2015 after a long battle with cancer. He was 49 years old.
Jimmy was born in Philadelphia, and is the son of James L. Kulick Sr. and Ottavia Pell, sister to Tina Kulick and was predeceased by his brother John Kulick.
Jimmy graduated from Abington High School and was self-employed for more than 30 years, and was the owner of Kulick Roofing, Inc.
Jimmy married his best friend and the love of his life, Susan, in 1999 and he was a wonderful husband and father to their son, Logan.
Always having a desire to stay in shape, Jimmy had a passion for bodybuilding. Jimmy also had a zest for learning about history and always wanted to find out about new cultures and places. He enjoyed traveling the world with his wife and son, Logan. He especially enjoyed spending time at the beach, as well as snorkeling and swimming with sea turtles. His favorite place in the world was Palauea Beach in Maui, Hawaii.
For those who were fortunate enough to call him friend, Jimmy will be deeply missed and his bigger than life persona will never be forgotten.
Jimmy is survived by his wife, Susan W. Kulick and his son, Logan Kulick along with many relatives and friends.
Services will be held privately at the family’s convenience.
In lieu of flowers, an Educational Fund has been set up online for Jimmy’s son, Logan, and donations can be made at https://www.youcaring.com/LoganKulick-EducationalFund.
Memorial contributions may also be sent to For Pete's Sake Cancer Respite Foundation, 620 West Germantown Pike, Suite 250, Plymouth Meeting, PA 19462.
Monday, December 21, 2015
Jimmy's Gone
I had chronicled the last few days as they happened and today I am devastated. The end has come for Jimmy and he is now in the arms of God resting peacefully. I have lost the love of my life and my best friend. My life as I've known it for nearly 20 years has been changed forever.
12.19.15
We've been up since 2 a.m. because Jimmy's pain has been excruciating. Since he can no longer swallow his oral medication, he's had to miss a couple of doses and is now having to play catch up. We had a nurse come this morning around 4 a.m. to increase the pain medication in his pump to make up for the missed doses and to hopefully, make it so his pain is lessened. It took several hours before he was able to start getting any kind of relief. He upped is continuous dose on the pump and the button push to six times an hour instead of 4. I've had to set the timer for 10 minutes all night long.
I was talking to Jimmy this morning and he said "I'm ready to go". He said it three times and it scared me. I went to get Logan out of his room and we came to the bed, started crying and just talked to Jimmy. After a few minutes, he looked right at me and said "what the hell is going on". I swear I didn't know what to think, so I just started laughing. Jimmy, in true Jimmy fashion, smiled right at me like there was some inside joke I didn't know about.
We had another nurse that came mid afternoon and she increased his pump medicine again. She reiterated again that I have to continue to crush his oral medication and she put him on a strict schedule for it. She said I could give it with some juice so it wouldn't taste so bad and it might be easier for him to handle. Even then, he chokes on the small amount of medicine I'm giving him through the syringe. Of course, that's not helping because some of the medicine is for relaxation.
It has been a very stressful day as well as a very tiring day. I was able to get in bed with him and it helped him relax and it was good for me too just laying close to him. I just kept setting the timer for every 10 minutes so he would get that extra medication.
Jimmy has also completely stopped eating and drinking. He is going to the bathroom very little at this point. The nurse tells me that these are definite signs that the end is near.
In the evening, Jimmy blurted out "check, please". I didn't think I understood him so I asked him what he said. Again, he said "check, please". Then he said "let's go" and that was it. I guess we'd had dinner and he was ready to go...who knows.
I just want peace for him and for him to stop suffering. His body has been through enough in the past 3 years.
12.20.15
We went another night with no sleep and my pushing the pain pump. I am literally running on fumes right now. I made coffee for myself at 5 a.m. but was too tired to drink it. I took a few sips and I literally couldn't hold the coffee cup anymore. Jimmy has been so uncomfortable that he hasn't had good sleep in about 2 days.
The nurse came early around 9:30 a.m. She was worried about Jimmy's pain and seeming so agitated. His heart rate is very high and he just seems really distressed. The tremors, which are caused by the high doses of medication, continued constantly throughout the day and I hate having to watch them. I know they don't hurt Jimmy but just knowing he's so uncomfortable is upsetting. The nurse decided to give him a medication that was in the kit of meds they gave me when he started hospice. It is a med specifically for agitation. She gave him a dose and within an hour, the tremors and jerks seemed worse. She called me to see how he was doing and I told her this. She had already talked to the doctor and he said don't give him that medication again. So, once again, we are changing his meds up. She told me to take him off of everything except the pump and the one liquid medication. He isn't on anymore pills, so I don't have to crush anything anymore.
Once again, I laid down next to Jimmy today. We both seem to be able to rest and relax when we are next to each other. I slept on and off for about an hour. I so hope he gets as much comfort as I do from just being close to him. While next to him, I talked to about all of the things we've done over the years and the places we've gone on vacation. He seemed to enjoy reminiscing.
The hallucinations continued throughout the day and he said more things that didn't make sense. I do think that he is working things out in his head before he lets go. As evening approached, the liquid medication seemed to be working and he started to relax. The tremors slowed down and he started to really rest and get some sleep.
12.21.15
It was another rough night and Jimmy's rest was short lived. The tremors continued and I had to give him the liquid medication just about every hour all night long. At the 4 a.m. dose, he seemed scared and started yelling "help" for about 5 minutes. Then, I got scared and decided to call the nurse. He explained that often this happens at end of life where he patient thinks that the person taking care of them is trying to hurt them. This really hurt my feelings but I know it wasn't Jimmy doing it. He became more agitated and started biting his lip over and over until it started to bleed. I had to push a wash cloth between his teeth for a while so he wouldn't make the bite marks any worse. He finally calmed down after about 15 minutes and I just sat next to him and held his hand. I really don't know how he's still fighting. I managed to get about 2 hours of broken sleep and Jimmy rested early in the evening but, for the most part, we've both been up all night again.
Jimmy passed at about 9:15 a.m. this morning after fighting so hard for 3 long years. He had another seizure this morning and then he was gone. When he looked at me, we both just knew it was time. I laid my head on his chest and listened until his strong and wonderful heart stopped beating. Logan had already come home from school this morning because he called and just wanted to be home. He was home for about 15 minutes before Jimmy passed. My heart is broken for Logan and I grieve already for the lost times Logan would have had with Jimmy.
I know that I will continue to cry and grieve for a long time to come. The only good thing that has come from today is that Jimmy is finally no longer in pain and is living in heaven. I know that I will see him again one day.
Please pray for my family. Thank you. xoxo
Susan
12.19.15
We've been up since 2 a.m. because Jimmy's pain has been excruciating. Since he can no longer swallow his oral medication, he's had to miss a couple of doses and is now having to play catch up. We had a nurse come this morning around 4 a.m. to increase the pain medication in his pump to make up for the missed doses and to hopefully, make it so his pain is lessened. It took several hours before he was able to start getting any kind of relief. He upped is continuous dose on the pump and the button push to six times an hour instead of 4. I've had to set the timer for 10 minutes all night long.
I was talking to Jimmy this morning and he said "I'm ready to go". He said it three times and it scared me. I went to get Logan out of his room and we came to the bed, started crying and just talked to Jimmy. After a few minutes, he looked right at me and said "what the hell is going on". I swear I didn't know what to think, so I just started laughing. Jimmy, in true Jimmy fashion, smiled right at me like there was some inside joke I didn't know about.
We had another nurse that came mid afternoon and she increased his pump medicine again. She reiterated again that I have to continue to crush his oral medication and she put him on a strict schedule for it. She said I could give it with some juice so it wouldn't taste so bad and it might be easier for him to handle. Even then, he chokes on the small amount of medicine I'm giving him through the syringe. Of course, that's not helping because some of the medicine is for relaxation.
It has been a very stressful day as well as a very tiring day. I was able to get in bed with him and it helped him relax and it was good for me too just laying close to him. I just kept setting the timer for every 10 minutes so he would get that extra medication.
Jimmy has also completely stopped eating and drinking. He is going to the bathroom very little at this point. The nurse tells me that these are definite signs that the end is near.
In the evening, Jimmy blurted out "check, please". I didn't think I understood him so I asked him what he said. Again, he said "check, please". Then he said "let's go" and that was it. I guess we'd had dinner and he was ready to go...who knows.
I just want peace for him and for him to stop suffering. His body has been through enough in the past 3 years.
12.20.15
We went another night with no sleep and my pushing the pain pump. I am literally running on fumes right now. I made coffee for myself at 5 a.m. but was too tired to drink it. I took a few sips and I literally couldn't hold the coffee cup anymore. Jimmy has been so uncomfortable that he hasn't had good sleep in about 2 days.
The nurse came early around 9:30 a.m. She was worried about Jimmy's pain and seeming so agitated. His heart rate is very high and he just seems really distressed. The tremors, which are caused by the high doses of medication, continued constantly throughout the day and I hate having to watch them. I know they don't hurt Jimmy but just knowing he's so uncomfortable is upsetting. The nurse decided to give him a medication that was in the kit of meds they gave me when he started hospice. It is a med specifically for agitation. She gave him a dose and within an hour, the tremors and jerks seemed worse. She called me to see how he was doing and I told her this. She had already talked to the doctor and he said don't give him that medication again. So, once again, we are changing his meds up. She told me to take him off of everything except the pump and the one liquid medication. He isn't on anymore pills, so I don't have to crush anything anymore.
Once again, I laid down next to Jimmy today. We both seem to be able to rest and relax when we are next to each other. I slept on and off for about an hour. I so hope he gets as much comfort as I do from just being close to him. While next to him, I talked to about all of the things we've done over the years and the places we've gone on vacation. He seemed to enjoy reminiscing.
The hallucinations continued throughout the day and he said more things that didn't make sense. I do think that he is working things out in his head before he lets go. As evening approached, the liquid medication seemed to be working and he started to relax. The tremors slowed down and he started to really rest and get some sleep.
12.21.15
It was another rough night and Jimmy's rest was short lived. The tremors continued and I had to give him the liquid medication just about every hour all night long. At the 4 a.m. dose, he seemed scared and started yelling "help" for about 5 minutes. Then, I got scared and decided to call the nurse. He explained that often this happens at end of life where he patient thinks that the person taking care of them is trying to hurt them. This really hurt my feelings but I know it wasn't Jimmy doing it. He became more agitated and started biting his lip over and over until it started to bleed. I had to push a wash cloth between his teeth for a while so he wouldn't make the bite marks any worse. He finally calmed down after about 15 minutes and I just sat next to him and held his hand. I really don't know how he's still fighting. I managed to get about 2 hours of broken sleep and Jimmy rested early in the evening but, for the most part, we've both been up all night again.
Jimmy passed at about 9:15 a.m. this morning after fighting so hard for 3 long years. He had another seizure this morning and then he was gone. When he looked at me, we both just knew it was time. I laid my head on his chest and listened until his strong and wonderful heart stopped beating. Logan had already come home from school this morning because he called and just wanted to be home. He was home for about 15 minutes before Jimmy passed. My heart is broken for Logan and I grieve already for the lost times Logan would have had with Jimmy.
I know that I will continue to cry and grieve for a long time to come. The only good thing that has come from today is that Jimmy is finally no longer in pain and is living in heaven. I know that I will see him again one day.
Please pray for my family. Thank you. xoxo
Susan
Friday, December 18, 2015
A hard few days...
Another thing I didn't mention that happened a couple of weeks ago is still weighing on my mind. Jimmy's oldest son came to see him on Saturday, 12/5, with his new girlfriend. Jimmy had friends over and I took Logan to a swim meet. While they were here, the girlfriend went into our bedroom and took Jimmy's Michael Kors watch. Later that day, he came back over with BEER and wearing the watch! That's when I realized he had taken it. I didn't want to say anything in front of Jimmy but we talked about it later. I swear I don't know where Jimmy came from because he is not like anyone in his family. It seemed really strange to me. He stayed for another hour and a half before I asked him to leave. My friends were here and we were going out to get something to eat. About 15 minutes later, he texted me saying he thought he forgot his keys in my house, so we went back to let him in. Sure enough his keys were there. Since he came back into Jimmy's life, I wasn't sure I could trust him. There was just something I couldn't put my finger on. Now I know I can't. I used to just leave the door open when I left in case there was an emergency while I was gone but I had stopped doing this because people would just come and go as they please and Jimmy can't have that anymore. I believe he thought I would leave the door open so he could just go in. Jimmy said that someone had tried to open the door while we were gone. I wholeheartedly believe that he was after something and he thought he could just come in and take it. Jimmy had already given him his guitar and his son knew how much it meant to Jimmy. The watch was supposed to be for Logan since he gave it to Jimmy for Father's Day. So, I texted Jimmy's son to tell him this and offered to give him another of Jimmy's watches. Well, its been almost 2 weeks and I've heard nothing from him. I hope he got what he wanted and that he enjoys the watch...asshole.
12.15.15
Another eventful night of no sleep and cleaning up. Apparently, 3am is the magic hour, since I am up every night at that time. I have resorted to sleeping on the couch, so I can be near him in case he needs me. I feel like all I do is watch to see if he is breathing all night long.
Jimmy is definitely showing signs of declining. He is getting increasingly confused and he is sleeping more. He is also having more trouble understanding me when I talk to him. He says jibberish sometimes and uses the wrong words to describe something. This morning he was trying to tell me to move the "pillow" but kept saying the word "ball" instead. This makes me so sad. I find myself crying on an off all day long. Jimmy definitely still hears and understands though. When I offered him a cannoli this morning, he raised his eyebrows, smiled and woke up to eat a cannoli. For someone who never ate sweets that often, he certainly has a sweet tooth now. Then, this afternoon, I was just holding his hand and talking to him about nothing when he looked up at me...so, I winked at him. In true flirty Jimmy fashion, he winked right back! Just when I think he's finished surprising me, he does it again. These are the times I'm going to cherish and remember.
The evenings seem to be the hardest times for all of us. Watching Logan watch Jimmy like this breaks my heart. He is being so strong and he sometimes tries to comfort me instead of the other way around. I know I've said it before, but no child should have to watch a parent suffer the way Logan has watched Jimmy suffer. Speaking of comforting, while I had my head on Jimmy's chest tonight I started to cry. He's been pretty unresponsive all day but he put his hand on my head to comfort me. Of course, that just made me cry even more. Even now, he's still taking care of me. I love this man so much!
12.16.15
Today was a mostly good day but he also had a lot of confusion today. When he woke up, he didn't know why he was hurting. I explained to him that he was sick and had cancer. He got very upset and started to cry because to him it was like hearing the news for the very first time. It broke my heart. A friend of Jimmy's came over in the morning and he had a good visit. He was able to have a conversation and he really enjoyed Frank coming to visit.
The psych nurse came a little later in the and Jimmy was very confused when he was here. He didn't know what day it was and he didn't think he was dying. He told the nurse that he only found out today that he had cancer. When the nurse was leaving, he told me that everything that was happening was normal and due to the progression of the disease.
Tonight Jimmy asked me to lay down next to him so I did. We talked and cried and it was so nice to be in his arms. I was so worried that I would fall asleep and my laying there would hurt him. We fell asleep for about an hour and a half before I got up. It felt so normal and I will treasure that time forever.
12.17.15
After all of the bullshit last week, the social worker had planned to come today so Jimmy's parents and sister could come over to see Jimmy...Jim (dad), Tavy (mom) and Tina (sister). They knew last week that today was the day for the visit but when I talked to Jimmy's dad this morning, he said that he didn't feel like coming over...that Tina decided to work today and Tavy didn't have a car to get here...UNBELIEVABLE! It pisses me off that they aren't even trying to make an effort to see Jimmy...not the least of which none of them have gotten in touch to see how he is doing since last Tuesday. I don't want to hear how much they care about Jimmy anymore because clearly they don't. Like things aren't bad enough already...I have to worry about family drama and thieves.
On a positive note, I let Logan stay home from school today so that we could spend time together as a family. It was really good for all of us to just be quiet at home.
12.18.15
Today wasn't the best of days. By the time Logan got to school, he was really upset and worried about Jimmy and wanted to come home. So, I went to pick him up and we spent another day just being together. We will never get this time back and I don't want Logan to lose any more time with Jimmy than he will already have to do so.
The nurse came over early today and Jimmy was in a lot of pain and had a fever. He has trouble swallowing and she wanted to put him on a liquid medication to go along with the pump medication, since he can't really take any of the oral meds anymore. I've had to crush them up in the last day just so he can take them. He hasn't really eaten in the last few days either. He says he just isn't hungry. She told me that these are all things to be expected and if he doesn't want to eat, then don't make him eat. We've also had a couple of bathroom accidents as well where I've had to change the sheets on the bed. Let's just say that its not easy to do without help.
It took a while for the liquid mediation to arrive and we've had to play catch up all day long to get Jimmy's pain under control. I've been setting the timer for every 15 minutes to push the button on the med pump since about 10am...it is now 9:30pm. He is finally sleeping peacefully and, hopefully, not in pain. I'm sure I will be up at 3am again though, just like I have been for the last few nights. With any luck, he will sleep the night through.
Thank you for those of you that have reached out via phone, text, email and Facebook. It truly means so much to my family that you care so much. Please continue to pray that Jimmy's pain can stay under control and that he gets a good night's rest.
As always, thanks for listening...XOXO and May God Bless You.
Susan
12.15.15
Another eventful night of no sleep and cleaning up. Apparently, 3am is the magic hour, since I am up every night at that time. I have resorted to sleeping on the couch, so I can be near him in case he needs me. I feel like all I do is watch to see if he is breathing all night long.
Jimmy is definitely showing signs of declining. He is getting increasingly confused and he is sleeping more. He is also having more trouble understanding me when I talk to him. He says jibberish sometimes and uses the wrong words to describe something. This morning he was trying to tell me to move the "pillow" but kept saying the word "ball" instead. This makes me so sad. I find myself crying on an off all day long. Jimmy definitely still hears and understands though. When I offered him a cannoli this morning, he raised his eyebrows, smiled and woke up to eat a cannoli. For someone who never ate sweets that often, he certainly has a sweet tooth now. Then, this afternoon, I was just holding his hand and talking to him about nothing when he looked up at me...so, I winked at him. In true flirty Jimmy fashion, he winked right back! Just when I think he's finished surprising me, he does it again. These are the times I'm going to cherish and remember.
The evenings seem to be the hardest times for all of us. Watching Logan watch Jimmy like this breaks my heart. He is being so strong and he sometimes tries to comfort me instead of the other way around. I know I've said it before, but no child should have to watch a parent suffer the way Logan has watched Jimmy suffer. Speaking of comforting, while I had my head on Jimmy's chest tonight I started to cry. He's been pretty unresponsive all day but he put his hand on my head to comfort me. Of course, that just made me cry even more. Even now, he's still taking care of me. I love this man so much!
12.16.15
Today was a mostly good day but he also had a lot of confusion today. When he woke up, he didn't know why he was hurting. I explained to him that he was sick and had cancer. He got very upset and started to cry because to him it was like hearing the news for the very first time. It broke my heart. A friend of Jimmy's came over in the morning and he had a good visit. He was able to have a conversation and he really enjoyed Frank coming to visit.
The psych nurse came a little later in the and Jimmy was very confused when he was here. He didn't know what day it was and he didn't think he was dying. He told the nurse that he only found out today that he had cancer. When the nurse was leaving, he told me that everything that was happening was normal and due to the progression of the disease.
Tonight Jimmy asked me to lay down next to him so I did. We talked and cried and it was so nice to be in his arms. I was so worried that I would fall asleep and my laying there would hurt him. We fell asleep for about an hour and a half before I got up. It felt so normal and I will treasure that time forever.
12.17.15
After all of the bullshit last week, the social worker had planned to come today so Jimmy's parents and sister could come over to see Jimmy...Jim (dad), Tavy (mom) and Tina (sister). They knew last week that today was the day for the visit but when I talked to Jimmy's dad this morning, he said that he didn't feel like coming over...that Tina decided to work today and Tavy didn't have a car to get here...UNBELIEVABLE! It pisses me off that they aren't even trying to make an effort to see Jimmy...not the least of which none of them have gotten in touch to see how he is doing since last Tuesday. I don't want to hear how much they care about Jimmy anymore because clearly they don't. Like things aren't bad enough already...I have to worry about family drama and thieves.
On a positive note, I let Logan stay home from school today so that we could spend time together as a family. It was really good for all of us to just be quiet at home.
12.18.15
Today wasn't the best of days. By the time Logan got to school, he was really upset and worried about Jimmy and wanted to come home. So, I went to pick him up and we spent another day just being together. We will never get this time back and I don't want Logan to lose any more time with Jimmy than he will already have to do so.
The nurse came over early today and Jimmy was in a lot of pain and had a fever. He has trouble swallowing and she wanted to put him on a liquid medication to go along with the pump medication, since he can't really take any of the oral meds anymore. I've had to crush them up in the last day just so he can take them. He hasn't really eaten in the last few days either. He says he just isn't hungry. She told me that these are all things to be expected and if he doesn't want to eat, then don't make him eat. We've also had a couple of bathroom accidents as well where I've had to change the sheets on the bed. Let's just say that its not easy to do without help.
It took a while for the liquid mediation to arrive and we've had to play catch up all day long to get Jimmy's pain under control. I've been setting the timer for every 15 minutes to push the button on the med pump since about 10am...it is now 9:30pm. He is finally sleeping peacefully and, hopefully, not in pain. I'm sure I will be up at 3am again though, just like I have been for the last few nights. With any luck, he will sleep the night through.
Thank you for those of you that have reached out via phone, text, email and Facebook. It truly means so much to my family that you care so much. Please continue to pray that Jimmy's pain can stay under control and that he gets a good night's rest.
As always, thanks for listening...XOXO and May God Bless You.
Susan
Sunday, December 13, 2015
Jimmy is now on HOSPICE...
Its been a tough couple of months. I know I keep saying it but I just haven't felt like writing. I feel like living it once is enough and writing about it seems redundant. Sometimes it feels comforting to write and other times it doesn't. Well, here's what's been happening...
Below are some notes I made to myself so I'm just going to leave them as is and continue on from there...
10.12 off to chemo...truck broke down...reschedule chemo for 10.13
10.13 fever, out of control pain, ambulance to D'town hospital. Family annoyed me. Transferred to Fox Chase to find more family waiting...no chemo
10.14 getting pain meds regulated. MIL is PITA. still no chemo...may need a blood transfusion
10.15 nice quiet day at hospital with pain getting better
10.16 chemo today...no transfusion...getting to go home with pain pump...transport home via ambulance...home at 10pm
10.17 J glad to be home...both of us very tired...finally got some rest
10.18 quiet day at home packing up...pain is well managed
10.19 Jimmy is depressed...
10.26 Severe pain the past several days. Infusion pump meds increased twice. Today he can't even sit up without excruciating pain. He hasn't been eating properly and he's either awake and in pain or asleep. This is no existence. Last week, I started having my own health issues. I've had a uterine u/s and biopsy. GYN thinks I have uterine cancer. Waiting on biopsy for sure. It turned out that my GYN wanted me to have a D&C since the results of my biopsy weren't conclusive. I had my procedure done and found out that it was only a polyp...finally, some good news!
10.27 Pain seems to be better controlled. The doctor came in 10 minutes after I left. I so wish I would have been there because Jimmy had to get the news by himself. The CT Scan showed 20% growth in the last 3 weeks. No more chemo...HOSPICE. Meeting with social worker tomorrow. Very, very sad.
10.28 I cried all day yesterday and this morning. I couldn't wait to get to the hospital to see Jimmy. I knew that just seeing him would make me feel better. I was so exhausted that I could barely put one foot in front of the other today.
10.29 Home from Fox Chase via ambulance.
November was filled with getting to know the hospice people and packing the house to move. Our move date was scheduled for December 6th so Logan and I took a trip down to Mississippi to look for a place to live. After all the searching I had done the past few months online looking at houses, I found a house I liked in 2 days. We were all excited and couldn't wait to move.
Getting used to the idea that my strong and vibrant husband is on HOSPICE is surreal. We will be lucky if he makes it to Christmas this year. Its hard to believe that after 3 years, we are dealing with this now. Jimmy has been in so much pain and so uncomfortable for so long. There are days that the pain is so out of control that the nurses have had to come and increase his pain meds more than once. I hate that Logan has to see Jimmy like this. No child deserves to see his father this way. I know that everyone says that God does things for a reason. Its really hard for me to understand how God can let Jimmy suffer the way he does and for Logan to hurt so much.
Thanksgiving was very quiet this year. We stayed home. Two organizations donated turkey dinners to us as well. The kindness of strangers has been so wonderful. There truly is good in the world. Over the weekend, we watched a marathon of the Rocky movies. Jimmy and I used to do this over Thanksgiving weekend before Logan was born, so it was fun to do it again this year.
Over Thanksgiving weekend, it became apparent that Jimmy would not be able to travel and make the move to Mississippi. His pain was too great and there was no way to get him there comfortably. We are all so very disappointed that we would not move as a family. Jimmy and I tried every way possible to get him down there. I called angel flights companies and the best we could come up with was a private flight with nursing care but it would cost us $11,000. Well, that was out. So, Jimmy and I decided that Jimmy would stay at home and Logan and I would move after the inevitable happened. This still makes me very sad to think about Logan and I moving without Jimmy. A part of me feels as though we will be leaving our life with Jimmy behind. A part of me also doesn't even want to move at all because Jimmy can't go. Logically, I know the best thing for Logan and I is to be around my family and get the support that we need because we really don't get that here now. However, I am really going to miss my friends but thanks to social media, it will very easy to keep in touch.
The last couple of weeks have been exhausting. We have a hospital bed in our living room since Jimmy is completely bedridden and can't turn or lift himself up without help. He is no longer the man I once knew and I hate that for me and for him. He apologizes to me every day for putting me through this. Really?! Like he meant for this to happen?! I just hug and kiss him and reassure him that I can't imagine being anywhere else. It hasn't been easy for either of us as Jimmy's health has been declining. Now that he is bedridden, he can't get up to go to the bathroom and I have to clean him up in bed. I'm usually up every night about 2 or 3 times whether to clean him up or to just check on him. I feel like I am always needing a nap. He is so ashamed that his life has come to this. He always said that he didn't want cancer to take him piece by piece and that's what its doing. It is now taking his dignity and for that I despise cancer even more than I thought I could. Jimmy has also developed several bed sores because he is immobile. His has a few on his left leg...one on his heel and a couple on his calf. Those look like bruises but he has one on his tailbone that is really bad. No matter how often I turn him, it just can't be avoided. Just another thing this cancer has done to him...I hate cancer. Here's a pic to see just how bad it has gotten...GRAPHIC PIC BELOW...
FYI...rant to follow...I have been holding my tongue for Jimmy's sake but I can't take it anymore. This is my blog and I WILL say what I want to say...finally. Dealing with Jimmy's family has been hard. Jimmy has been sick for 3 years and his family never came around much, even when he was having chemo in the hospital. Now, they all want to come over all the time because they know he is dying. Truthfully, Jimmy doesn't want them to come all the time. We've started to have to schedule visits for them to come at the same time, so Jimmy won't get so tired having to be "on" all the time. Not to mention that they have just been showing up without calling and staying for hours on end even if Jimmy was sleeping. Oddly, Jimmy feels the need to be "on" for his family but not his friends. This week was especially difficult. Jimmy's mom and sister were here this past Tuesday and had been here for over 2 hours when Jimmy asked me to ask them to leave. His Dad showed up without calling ahead so I went outside and told him that Jimmy did not feel like visiting any longer and could he just come another time. When Jimmy's mom heard me telling him this, she wanted to know if she had to go...to which I said yes because Jimmy was tired and wanted to rest. Jimmy told me he did not want his dad to come in and he told me that he was ready for his mom and sister to leave. His mom went in my house and slammed my front door...really?! I tried to tell them nicely...again...that they needed to visit another time. His sister told me she was not leaving no matter what. She got in my face and insisted she wasn't going anywhere. I refuse to be bullied in my own home and I told her to get out pushing her toward the door. His mom came from the across the room and called me an f'ing bitch and many other things and slapped me across the face. Of course I slapped her back and said everything I ever wanted to say to her...the things that everybody else thinks but no one wants to say. If she wanted to come in my house and disrespect me and hit me, then all bets are off. After this, they still wouldn't leave. (I know you can't believe this really happened, right?) I ended up having to call the police to have them escorted out. This all happened right in front of Jimmy too. The police officer had to physically remove Jimmy's mom from my house. She continued to scream at me as she was walking out the door. His sister actually had the gall to have one of the police officers to ask me when she could come back. For crying out loud, she didn't even leave yet after having to be escorted out by the police! The police told them to get in their cars and leave and they just stayed in the parking lot for about 20 minutes before they left. Needless to say, they proved just how selfish they are...and, after all that not one person called to see how Jimmy is doing until Friday...3 days. His dad called me on Friday to say Jimmy's mom is driving him crazy about when she can see Jimmy again. He asked about Jimmy kind of like an afterthought. His mom texted me about when too but never asked how Jimmy was doing, only that she wanted to see him. I told Jimmy's dad that before his mom and sister could even come that they would have to apologize in person to both Jimmy and I. Jimmy and I also talked to the social worker and we decided that Jimmy's mom and sister will only be allowed over with the social worker here and then for only 30 minutes. I do not even want them here but if Jimmy wants them to come, then I will let them come. It will be very hard for me to welcome them through the front door after being bullied and assaulted in my own home. But, for Jimmy, I will. Jimmy's cancer has been so hard without having to deal with shit like this. My feeling is that if they truly loved Jimmy like they say they do, then when I asked them politely to leave (at Jimmy's request), they should have just agreed that they had stayed long enough and said they'd come back another time. That morning Jimmy didn't even want them to come over. He asked me to call them and tell them not to come. I was the one who insisted he let them come over. What an ass I am. Next time I will do what Jimmy wants. I also want to add that I had my best friends here from Louisiana. They came to visit Jimmy (they were going to help us move this past weekend but decided to come even though we were not moving) and this all went down in front of them...virtual strangers to Jimmy's family. Unbelievable. This has not been the first of these such episodes with Jimmy's mom but this was by far the worst. I'm tired of having to explain myself to Jimmy's family about the care I give to him. My loyalty is to Jimmy and Logan and to no one else. I'm sure I will hear something about this post but I really don't care.
Now that I've aired that dirty laundry, I will tell you how Jimmy is today. After several days of complete peace and quiet, he is resting comfortably. The hospice nurses have told me that he needs peace for his body to relax. Anxiety creates more pain for him and his body can't take any more pain. He's been eating and drinking okay but he gets tired very easily. He has also been forgetting little things for a while now but he has been very disoriented the past 2 days. He slept most of the day but I'm glad he's been able to rest. He really needs it. It made me sad that when Logan tried to talk to him tonight, Jimmy wasn't very communicative. Logan thought Jimmy couldn't hear him or didn't know who he was. I assured him that Jimmy understood but that his body is just so tired that he isn't able to respond like normal. Jimmy and Logan have talked a lot before today and Jimmy did tell Logan he loves him tonight and for that I am grateful. I want Logan to hear that as much as he can from Jimmy.
I also want to say a great big Thank You to our friends, Matt and Annie Artau. They brought over a Christmas tree for us last night, a couple of gifts for Logan and a fabulous dinner. Thank you!
Sorry it took me so long to give an update...and to air some dirty laundry. Tonight, I remembered just how good it feels to write my thoughts and feelings down. I definitely won't wait this long to write in my blog again.
Thank you for allowing me to vent and share my story with you. My thoughts and prayers go out to my friends and their families that are struggling with this horrible disease. May God Bless You. xoxo
Below are some notes I made to myself so I'm just going to leave them as is and continue on from there...
10.12 off to chemo...truck broke down...reschedule chemo for 10.13
10.13 fever, out of control pain, ambulance to D'town hospital. Family annoyed me. Transferred to Fox Chase to find more family waiting...no chemo
10.14 getting pain meds regulated. MIL is PITA. still no chemo...may need a blood transfusion
10.15 nice quiet day at hospital with pain getting better
10.16 chemo today...no transfusion...getting to go home with pain pump...transport home via ambulance...home at 10pm
10.17 J glad to be home...both of us very tired...finally got some rest
10.18 quiet day at home packing up...pain is well managed
10.19 Jimmy is depressed...
10.26 Severe pain the past several days. Infusion pump meds increased twice. Today he can't even sit up without excruciating pain. He hasn't been eating properly and he's either awake and in pain or asleep. This is no existence. Last week, I started having my own health issues. I've had a uterine u/s and biopsy. GYN thinks I have uterine cancer. Waiting on biopsy for sure. It turned out that my GYN wanted me to have a D&C since the results of my biopsy weren't conclusive. I had my procedure done and found out that it was only a polyp...finally, some good news!
10.27 Pain seems to be better controlled. The doctor came in 10 minutes after I left. I so wish I would have been there because Jimmy had to get the news by himself. The CT Scan showed 20% growth in the last 3 weeks. No more chemo...HOSPICE. Meeting with social worker tomorrow. Very, very sad.
10.28 I cried all day yesterday and this morning. I couldn't wait to get to the hospital to see Jimmy. I knew that just seeing him would make me feel better. I was so exhausted that I could barely put one foot in front of the other today.
10.29 Home from Fox Chase via ambulance.
November was filled with getting to know the hospice people and packing the house to move. Our move date was scheduled for December 6th so Logan and I took a trip down to Mississippi to look for a place to live. After all the searching I had done the past few months online looking at houses, I found a house I liked in 2 days. We were all excited and couldn't wait to move.
Getting used to the idea that my strong and vibrant husband is on HOSPICE is surreal. We will be lucky if he makes it to Christmas this year. Its hard to believe that after 3 years, we are dealing with this now. Jimmy has been in so much pain and so uncomfortable for so long. There are days that the pain is so out of control that the nurses have had to come and increase his pain meds more than once. I hate that Logan has to see Jimmy like this. No child deserves to see his father this way. I know that everyone says that God does things for a reason. Its really hard for me to understand how God can let Jimmy suffer the way he does and for Logan to hurt so much.
Thanksgiving was very quiet this year. We stayed home. Two organizations donated turkey dinners to us as well. The kindness of strangers has been so wonderful. There truly is good in the world. Over the weekend, we watched a marathon of the Rocky movies. Jimmy and I used to do this over Thanksgiving weekend before Logan was born, so it was fun to do it again this year.
Over Thanksgiving weekend, it became apparent that Jimmy would not be able to travel and make the move to Mississippi. His pain was too great and there was no way to get him there comfortably. We are all so very disappointed that we would not move as a family. Jimmy and I tried every way possible to get him down there. I called angel flights companies and the best we could come up with was a private flight with nursing care but it would cost us $11,000. Well, that was out. So, Jimmy and I decided that Jimmy would stay at home and Logan and I would move after the inevitable happened. This still makes me very sad to think about Logan and I moving without Jimmy. A part of me feels as though we will be leaving our life with Jimmy behind. A part of me also doesn't even want to move at all because Jimmy can't go. Logically, I know the best thing for Logan and I is to be around my family and get the support that we need because we really don't get that here now. However, I am really going to miss my friends but thanks to social media, it will very easy to keep in touch.
The last couple of weeks have been exhausting. We have a hospital bed in our living room since Jimmy is completely bedridden and can't turn or lift himself up without help. He is no longer the man I once knew and I hate that for me and for him. He apologizes to me every day for putting me through this. Really?! Like he meant for this to happen?! I just hug and kiss him and reassure him that I can't imagine being anywhere else. It hasn't been easy for either of us as Jimmy's health has been declining. Now that he is bedridden, he can't get up to go to the bathroom and I have to clean him up in bed. I'm usually up every night about 2 or 3 times whether to clean him up or to just check on him. I feel like I am always needing a nap. He is so ashamed that his life has come to this. He always said that he didn't want cancer to take him piece by piece and that's what its doing. It is now taking his dignity and for that I despise cancer even more than I thought I could. Jimmy has also developed several bed sores because he is immobile. His has a few on his left leg...one on his heel and a couple on his calf. Those look like bruises but he has one on his tailbone that is really bad. No matter how often I turn him, it just can't be avoided. Just another thing this cancer has done to him...I hate cancer. Here's a pic to see just how bad it has gotten...GRAPHIC PIC BELOW...
FYI...rant to follow...I have been holding my tongue for Jimmy's sake but I can't take it anymore. This is my blog and I WILL say what I want to say...finally. Dealing with Jimmy's family has been hard. Jimmy has been sick for 3 years and his family never came around much, even when he was having chemo in the hospital. Now, they all want to come over all the time because they know he is dying. Truthfully, Jimmy doesn't want them to come all the time. We've started to have to schedule visits for them to come at the same time, so Jimmy won't get so tired having to be "on" all the time. Not to mention that they have just been showing up without calling and staying for hours on end even if Jimmy was sleeping. Oddly, Jimmy feels the need to be "on" for his family but not his friends. This week was especially difficult. Jimmy's mom and sister were here this past Tuesday and had been here for over 2 hours when Jimmy asked me to ask them to leave. His Dad showed up without calling ahead so I went outside and told him that Jimmy did not feel like visiting any longer and could he just come another time. When Jimmy's mom heard me telling him this, she wanted to know if she had to go...to which I said yes because Jimmy was tired and wanted to rest. Jimmy told me he did not want his dad to come in and he told me that he was ready for his mom and sister to leave. His mom went in my house and slammed my front door...really?! I tried to tell them nicely...again...that they needed to visit another time. His sister told me she was not leaving no matter what. She got in my face and insisted she wasn't going anywhere. I refuse to be bullied in my own home and I told her to get out pushing her toward the door. His mom came from the across the room and called me an f'ing bitch and many other things and slapped me across the face. Of course I slapped her back and said everything I ever wanted to say to her...the things that everybody else thinks but no one wants to say. If she wanted to come in my house and disrespect me and hit me, then all bets are off. After this, they still wouldn't leave. (I know you can't believe this really happened, right?) I ended up having to call the police to have them escorted out. This all happened right in front of Jimmy too. The police officer had to physically remove Jimmy's mom from my house. She continued to scream at me as she was walking out the door. His sister actually had the gall to have one of the police officers to ask me when she could come back. For crying out loud, she didn't even leave yet after having to be escorted out by the police! The police told them to get in their cars and leave and they just stayed in the parking lot for about 20 minutes before they left. Needless to say, they proved just how selfish they are...and, after all that not one person called to see how Jimmy is doing until Friday...3 days. His dad called me on Friday to say Jimmy's mom is driving him crazy about when she can see Jimmy again. He asked about Jimmy kind of like an afterthought. His mom texted me about when too but never asked how Jimmy was doing, only that she wanted to see him. I told Jimmy's dad that before his mom and sister could even come that they would have to apologize in person to both Jimmy and I. Jimmy and I also talked to the social worker and we decided that Jimmy's mom and sister will only be allowed over with the social worker here and then for only 30 minutes. I do not even want them here but if Jimmy wants them to come, then I will let them come. It will be very hard for me to welcome them through the front door after being bullied and assaulted in my own home. But, for Jimmy, I will. Jimmy's cancer has been so hard without having to deal with shit like this. My feeling is that if they truly loved Jimmy like they say they do, then when I asked them politely to leave (at Jimmy's request), they should have just agreed that they had stayed long enough and said they'd come back another time. That morning Jimmy didn't even want them to come over. He asked me to call them and tell them not to come. I was the one who insisted he let them come over. What an ass I am. Next time I will do what Jimmy wants. I also want to add that I had my best friends here from Louisiana. They came to visit Jimmy (they were going to help us move this past weekend but decided to come even though we were not moving) and this all went down in front of them...virtual strangers to Jimmy's family. Unbelievable. This has not been the first of these such episodes with Jimmy's mom but this was by far the worst. I'm tired of having to explain myself to Jimmy's family about the care I give to him. My loyalty is to Jimmy and Logan and to no one else. I'm sure I will hear something about this post but I really don't care.
Now that I've aired that dirty laundry, I will tell you how Jimmy is today. After several days of complete peace and quiet, he is resting comfortably. The hospice nurses have told me that he needs peace for his body to relax. Anxiety creates more pain for him and his body can't take any more pain. He's been eating and drinking okay but he gets tired very easily. He has also been forgetting little things for a while now but he has been very disoriented the past 2 days. He slept most of the day but I'm glad he's been able to rest. He really needs it. It made me sad that when Logan tried to talk to him tonight, Jimmy wasn't very communicative. Logan thought Jimmy couldn't hear him or didn't know who he was. I assured him that Jimmy understood but that his body is just so tired that he isn't able to respond like normal. Jimmy and Logan have talked a lot before today and Jimmy did tell Logan he loves him tonight and for that I am grateful. I want Logan to hear that as much as he can from Jimmy.
I also want to say a great big Thank You to our friends, Matt and Annie Artau. They brought over a Christmas tree for us last night, a couple of gifts for Logan and a fabulous dinner. Thank you!
Sorry it took me so long to give an update...and to air some dirty laundry. Tonight, I remembered just how good it feels to write my thoughts and feelings down. I definitely won't wait this long to write in my blog again.
Thank you for allowing me to vent and share my story with you. My thoughts and prayers go out to my friends and their families that are struggling with this horrible disease. May God Bless You. xoxo
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