MORE family drama...WTF

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

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.

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

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

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

Good news...good news...bad news

10.8.15

I know that I've said this before but it really does seem to be getting harder and harder to write. I think that writing it down makes everything real and our life is anything but what I want to be real right now. Hence, the reason it has been 3 months since I've written anything. It doesn't mean that I don't think about it every day because I do. I just can't seem to want to sit down and write. Instead of it being cathartic, I think I has become harder to relive everything that is happening by writing it down. And, it saves you from having me be able to remember all the gory details! Well, here goes a synopsis of the last 3 months...

The first Good News...Jimmy was accepted into the clinical trial for the drug Yondelis. This drug has been approved in other countries but not here in the US yet. It has also shown positive results in some forms of sarcoma although not in Jimmy's specific subtype. We were told that he would continue in this trial as long as Jimmy could tolerate the drug and that there was no tumor growth. If either of those things happened, then he would be out of the trial. This drug is not yet FDA approved for Jimmy's type of sarcoma but there was some indication that it may be beneficial. The infusion for this drug is 24 hours. Jimmy went for his first round on July 9th. They hooked him up to a portable pump and he was able to come home. We returned the next day after 24 hours for him to be disconnected. It all seemed to be going so well until the nausea kicked in. Jimmy was sick as a dog for about 4 days where all he did was throw up. For someone I have seen throw up only a couple of times in nearly 20 years (and even then it was because of partaking in too much alcohol consumption...HAHA), I knew he was really sick. I felt so helpless because there was nothing I could do to make it better. I would just put cold rags on his head and rub his back. Finally, it stopped and he started to feel a little better the following week. This trial drug is also a 21-day cycle. At the beginning of the second cycle, the doctor decided that the dosage of the trial drug should be lowered to help with the side effects. She also put him on a staggered steroid cycle to help minimize side effects as well. Thankfully, by doing both of these things, Jimmy's nausea all but went away during this cycle.

Before the next cycle was to begin, we were lucky enough to be sent on a vacation that we otherwise would not have had but for the kindness of Southwest Airlines and the Hyatt Regency in Clearwater Beach, Florida. I dealt with two of the most amazing people...Dena Roady, General Manager at the Hyatt Regency in Clearwater Beach and Kim Seale at Southwest Airlines. They were both kind, compassionate and made every detail of our trip magnificent, especially Dena. Our suite at the Hyatt was so beautiful and so much more than we expected. If you have an opportunity to use either company over the many others out there, I highly recommend using them. You will not be disappointed and your expectations will be met. The gratitude I have for these two companies in making what will most likely be our last family vacation is immeasurable. Dena and Kim, thank you so much for making it a week full of lasting memories for my family.

On August 20, 2015, the day that the 3rd cycle was to begin, Jimmy was scheduled for scans to see how the chemo was working. We were both nervous but optimistic. When we met with the doctor she explained that the tumor in the groin area had grown a little, the tumor in his hamstring had shrunk a little and the area in his abdomen and lungs had stayed about the same. I remember holding my breath waiting for her to say that he was out of the trial because of growth in the groin tumor. Fortunately, she thought that there was enough of an advantage that he could continue on the clinical trial. Whew! More good news. I could barely believe it. First, that Jimmy was lucky enough to be eligible for a trial and having it work too...this is truly a blessing. So, they hooked him up to his portable pump and off we went for round 3 of the trial drug. Round 3 went by without too much trouble. We only had one trip to the ER during this cycle and Jimmy got to come home instead of having to be admitted, which is usually the case.

During Round 3, Logan got the chance to go to Camp Kesem. This is a week-long, overnight camp specifically for kids that have a parent with cancer and its free to families. It is a great camp. A friend, whose husband had cancer told me about this camp. Her kids have gone in past years and they were going this year too. I'm glad because Logan had a friend at camp before he ever got there. Their days were spent having fun, fun and more fun! They did, however, take time during the week to talk about why they were all there. The kids could talk about it or not talk about it. Logan said he wasn't sure if he would talk or not when he got to camp. Every day I would stalk...well, maybe not stalk...ok, stalk (haha)...the Facebook page for the camp since daily pictures were posted of the kids. I could see in the pictures that Logan was having a better and better time as the week went on. This made me feel good, especially since we were not allowed to talk to the kids while they were at camp. I believe this was so much harder on me. I really missed Logan...he's my buddy and the person I do everything with now that Jimmy can't. It was hard but it was good for both of us. When Logan got home, he said he had the time of his life. The best part was when he told me that he "talked" at camp. He said he felt not so alone in knowing he wasn't the only kid dealing with cancer at home. Camp Kesem...Mission Accomplished. For those of you who might want to know about the camp for your kids, it is all over the US and each camp is organized by college students. Google it. I promise your kids will love it.

As summer was ending and school was starting, Round 4 of chemo began on September 10th. During the latter part of this round, Jimmy starting running a fever nearly every day of about 100 to 101 and his pain began to worsen. He went from walking around inside and outside the house by himself to once again using a crutch or walker in the house. We have continued to use the wheelchair when we have to go anywhere away from home too. Of course, I started to fear the worst and think that the trial wasn't working. I was literally a nervous wreck in the days before Jimmy's doctor visit. On October 1st, which is the start date of the next round, Jimmy was scheduled for blood work and scans to see how the chemo was working. Well, you guessed it...here's the bad news. The doctor told us that there was "significant" growth in all areas and that Jimmy could no longer continue the trial. W.T.F.

A million questions were in my mind as the doctor talked...
Now what do we do?
Are there any other options?
Will Jimmy die now?
OMG, what about Logan?

All I could do was sit there and cry quietly while the doctor continued to talk. I felt completely helpless. For the very first time through all of this, I was afraid of losing Jimmy. I have always thought of him as this strong, virile presence in my life that would always be there no matter what. And now, I could really lose him.

The doctor told us about another drug called Halaven. It is a breast cancer drug and has about a 20% chance of working. The average time it is known to work before tumor growth is about 3 months. On paper, this drug does look like it has the potential to help prolong Jimmy's life by several months if it works and that's all we can hope for right now. So, Jimmy started the first round of this chemo on October 5th. The treatment itself is very short. It took about 20 minutes for his pre-meds and the chemo itself is just an injection pushed through his port. We were literally in and out in 2 hours. He will get another treatment in 7 days and start round 2 two weeks later. For those of you who (thankfully) have not had the experience of chemotherapy treatments, this treatment is like the express line at the grocery store...short and quick.

Jimmy did start running a fever of 102 the day after chemo and we went to the ER to have him looked at and to have some tests run. The doctors seem to think it is either viral or "tumor fever" and he sent him home with an antibiotic. I have believed for the last couple of weeks that his fever was stemming from the growth of the tumors. His symptoms were eerily similar to what they were in the beginning of all of this. The only difference now is that Jimmy's pain has increased exponentially. The amount of pain medication it takes for Jimmy to just be in less pain is enough to kill an elephant. I truly don't know how much more he can take and it hurts me to see him this way all of the time. Today was a very emotional day for me. I am so scared of losing Jimmy and can't imagine my life without him. Every time I thought about it brought on a new round of tears and anxiety. I love my husband so much and I never dreamed I would be talking about death, funerals, being a widow and what's best for my son without his Dad at this point in my life. It makes me very sad.

Ever since Jimmy started the clinical trial in the beginning of July, Jimmy and I have had many candid conversations about life, financial issues and our future. Jimmy has consistently said the he wants Logan and I to live near my family when he is no longer here, so that we will have support we need to move forward. Financially, it is becoming harder and harder to continue to live where we are right now. Without any income since last year, we are struggling and need to make a change based on that as well. If we needed to, we can stay with family in MS and that's not an option here. I grew up in Louisiana and have family in Louisiana and Mississippi, but moving to be near my family would be a big change, especially for Logan. Even though I've lived up north for 27 years, I grew up down south so I know what its like. But, for Logan and as many times as he has visited my family and liked visiting, it would be life-altering to move, since he only knows living where he is now. Aside from that, I can't imagine moving without Jimmy because I would feel like I was leaving him behind. I don't want to be without Jimmy regardless and I definitely don't want to start over somewhere else without him.

So, the more we talked, the more we kept coming up with moving sooner rather than later. We made lists of the pros and cons for moving and we kept coming up with the same thing. It would be better to move together as a family and it would be better for Logan to move and get settled before something happened to Jimmy. I do not want Logan to have to lose everything he has ever known in one fell swoop and by moving as a family, we would be able to make memories in our new home and feel like Jimmy would always continue to be a part of our life instead of having the feeling of leaving him behind. Jimmy's only hesitation was leaving his family (since he's never lived away from them before) and the fear that they might not come to visit him. But, in the end, it came down to what is best for our family unit. Having said all of that, we have decided to move to Ocean Springs, Mississippi in December.

Now that the move has been decided, I am relieved to have a game plan for our future in place. Although I am worried about money and scared to death to move, I know deep down that this is what is best for Logan. Of course, I am now second guessing myself because I don't want to make a wrong decision for Logan's future. Isn't that always the way?! I did do a lot of research on where we would live and the school district in Ocean Springs is a good one. There is a US swim team for Logan there as well. But, most of all, Logan is very excited about the move and the fact that he will have a lot of boy cousins his age to grow up with, along with grandparents, aunts and uncles ready and waiting for him to arrive. So, as you can imagine, I have a lot of work to do between now and December.

As always, I thank you for your support and ask that you continue to pray for my family, especially asking that God relieve Jimmy from his debilitating pain so that he can have try to have a good quality of life. Until next time...xoxo

Treatments Not Working...Sad and Depressed...Last Resort is Clinical Trial

7.5.15

For those of you who might be new to my blog, here's a recap of my husband's journey...

Jimmy was diagnosed with Stage III high grade undifferentiated pleomorphic sarcoma in February 2013. It started in his left hamstring. He had chemo, radiation and surgery in September 2013. Lung mets were found in March 2014 and he had them surgically removed in April 2014. Metastasis to his lungs meant that he was now Stage IV. In August of 2014, a groin/pelvic tumor was found and then he had radiation and surgery in November 2014. This surgery lasted 10.5 hours and he was left with 3 feet of incisions. In February 2015, he was diagnosed with recurrent hamstring and groin/pelvis tumors as well as lung mets. This recurrent disease means that he can't be cured and that his condition is terminal. He had 3 rounds of a chemo treatment (Gemzar/Taxotere) that didn't have positive results. The chemo was given with the hope of stopping the growth of the tumors and prolonging his life. This has been a very tough ride for our family and every day cancer continues to live in our life.

On May 4th, Jimmy started his new chemo regimen. Thankfully, the doctor is allowing him to have his treatments on an outpatient basis at a closer location to where we live, so Jimmy won't have to be in the hospital and I won't have to travel so much. He started him on a lower dose of one of the drugs, ifosfamide, since he was in the hospital for two weeks last month. He wants to make sure he can tolerate the treatment before giving him the larger dose. This was a long day. We were at the doctor's office for over 5 hours that day and Jimmy felt the effects of the chemo right away. Aside from the normal pain he has, he instantly became tired after the treatment. The next day was only 4 hours and Jimmy was really out of it and already felt like he had "chemo brain". That night, he had a really bad fall in the middle of the night while getting up to go to the bathroom. He tripped over the dog and fell hard on his knees. The round of chemo seemed to hit Jimmy hard. His body is already so weak and with this being a harsher combination of drugs, its getting harder and harder for him to tolerate it. He just came home every day and stayed in the bed until the next morning when he had to do it all over again. Jimmy was also very nauseous and even vomited. I've known Jimmy for nearly 20 years and have only seen him be sick that way twice.

Mother's Day came and went very quietly this year. Jimmy was worn out from chemo so Logan and I just went out to dinner to our favorite hibachi restaurant. It seemed weird to be celebrating without Jimmy but that's kind of what our life has become. We brought him some food home but it just isn't the same anymore without all 3 of us together celebrating.

On May 12th, we were back at the local emergency room because Jimmy started running a fever. Fever can be dangerous with Jimmy's blood counts being so low. His pain is still a huge issue and they continued to keep him on lots of pain meds. Jimmy ended up having to have 2 blood transfusions and was in the hospital for several days. He came home on heavy duty antibiotics for fear of infection. They had also been keeping his heavily hydrated in the hospital and they set us up with at home IV hydration and an at home nurse and physical therapist.

Jimmy has been sad and depressed lately and its been very hard to watch him be that way. He even went so far to say that he felt like he was dying. All I can say is thank goodness for my therapist. She is wonderful and it really is a big help to me being able to talk about how all of this makes me feel. Jimmy said he would like to talk to someone as well and I think that's a good idea.

Jimmy's next chemo treatment was supposed to start on May 26th but as luck would have it he started running a fever on May 23rd. I called his doctor and he said to watch it and, if it got worse or did not go away, he would want him to come to Philadelphia to the hospital. The fever persisted and I took him to the emergency room at Pennsylvania Hospital on May 24th because of the fever as well as severe pain and swelling...this time his right leg...the good leg...was swollen larger than his left. They did an ultrasound on Jimmy's right leg and found that he had a massive blood clot in his right leg. It extends from his groin area to his ankle. WTF...and the hits just keep on coming. They admitted him to the hospital and I decided to stay the night since it was so late already. Let me just say that hospital cots suck. I hardly got any sleep but it was worth it being able to be there first thing in the morning. Jimmy's doctor put him back on blood thinners because of the blood clot but Jimmy has to be watched closely because of the previous bleeding in his abdomen. Since he was in the hospital, the doctor thought that Jimmy could go ahead with the next chemo treatment too. It started a little later than planned because of pain but at least he didn't have to wait to continue treatment.

Jimmy was having a very tough time getting in and out of bed and walking wasn't even an option. He hadn't been able to go to the bathroom in days either. Of course, I have to help him with everything because he doesn't want anyone else to do it but me. On 5.27, I decided to take a day off from the hospital to get some things done around the house and to spend some time with Logan and Jimmy ended up having a bad day and night. The next day I was giving Jimmy a bath and I pulled his port out. He sat down on the bed and I didn't give the tube enough slack and the needle came right out...of course, he was getting chemo at the time and the medicine went all over him. Thankfully, he nurse said that the drug was not a skin irritant or it could have been a lot worse. It seems like the bad just never stops. We could all really use a break.

While at the hospital, Jimmy's doctor wanted him to meet with the palliative care team about his pain. Jimmy didn't want to but we talked to them anyway. FYI...Palliative and hospice are similar methods of care. The difference is that palliative care is given when treatment is still available to the patient, such as chemo. Hospice care is given when no more treatments are available. It was very confusing to us and it seemed so drastic and sad to be talking about these types of care already. The palliative care team suggested that methadone might be a better drug to use instead of using morphine, dilaudid and oxycodone together. They seemed to think that the methadone would control the pain better and that Jimmy could use oxycodone only for breakthrough pain instead of worrying about dosing 3 different drugs all day long. Of course, there's the stigma of "methadone" and it being used for heroin addicts. Nonetheless, Jimmy decided to try it. They said it would take a couple of days to build up in his system but our fingers were crossed that it would be the drug that finally got the pain under control.

By 5.31, Jimmy's pain seemed to be getting a little better. The doctor had said the day before that he wouldn't be able to go home unless he got out of bed and sat in a chair for an extended period of time, got up and tried to walk and poop...haha. Well, that's what he said. Jimmy definitely managed to meet all 3 of his goals...woo hoo! His blood counts were still low and he had to have another blood transfusion but, on June 1st, Jimmy was able to come home. He came home with a dilaudid pain pump just to be on the safe side. He wanted to have the option of having the medicine if he needed it in case the methadone didn't work. Jimmy's next scans were scheduled for the following week and we would find out if this chemo was working.

On June 6th, we celebrated our 16th wedding anniversary. Since Jimmy had just finished another round of chemo, he wasn't feeling well so we just stayed in and ordered take out. I was just happy we were all together and Jimmy was not in the hospital.

With Jimmy being in and out of the hospital so much in the last couple of months, Logan is really having a hard time. His school work is suffering and his behavior is showing the stress. It seems like ever since we found out the regimen of chemo in February and March wasn't working that he's taken a turn for the worse. I don't know how to help him. I can't do anything to stop what is happening to Jimmy and it makes my heart hurt for Logan. I want to protect him but there is nothing I can do. I just continue to watch him crumble and make bad choices. If we just got some sort of good news, I think it would go a long way in helping Logan deal with all of this. The only way I knew to try and help is to have him spend some quality time with Jimmy and to get him more therapy. So, even though there were only a couple of weeks left for Logan at elementary school, I opted to take him out of school for several days. He still participated in all of the important events but was able to take a break, chill out and spend some quality time with Jimmy too. Jimmy was even able to make it to Logan's 6th grade graduation and Logan was extremely excited that he did. Even Logan's friends were happy to see Jimmy. Now that summer is here, Logan is keeping busy on a swim team, hanging out with his friends and going to a couple of camps. I just want Logan to enjoy life and be a kid this summer.

Jimmy had his scans on June 10th and 11th. I had to disconnect his pain pump so he could get the MRI and he decided that he didn't want it reconnected. That's a good sign that the methadone is working. On the 12th, I met with his doctor and we went over the reports. Sadly, this chemo didn't work either. The tumors are still growing and there is an additional tumor in his abdomen. This tumor is in the same place where his abdominal bleeding was previously so I tend to believe that the bleeding most likely masked the appearance of the tumor at that time. Jimmy's doctor said he would try to get us in to talk to the doctor at Fox Chase Cancer Center about an immunotherapy trial (Keytruda is the drug) that has just opened up there. This trial is actually being done for people with Jimmy's specific sub type. He said there was a slim possibility of getting into this trial because of the high demand but it was worth a shot. There really is no other alternative but a clinical trial for Jimmy at this point.

On June 22, we went to see the doctor at Fox Chase about the immunotherapy trial. We went over all of the details of the trial and the doctor determined that he would be eligible for this trial, as well as another one, but they had to check with the host facility to see if there was room in the trial for Jimmy based on his sub type of sarcoma. The next day they called us and told us that the trial only had 10 spots available for his sub type...9 were taken and there were 10 people on a waiting list for the last spot. So, this trial is a no go. Another setback. We scheduled another appointment to see the doctor on June 25th to talk about the other trial...a chemo drug (Yondelis) that is already approved for other use in other countries but not in the United States. We met with the doctor and Jimmy was preliminarily accepted and is in the screening process. They said the screening will take about 2 weeks. Since this really is the last resort of treatment, I hope that Jimmy gets into this trial. Even though this trial is not specific to Jimmy's type of cancer, it is better than no treatment at all. With lots of prayers and a little good luck, he will get accepted and it will help to prolong his life a little longer.

This has been and continues to be such an emotional roller coaster for all of us. Jimmy and I have certainly had our moments over the past 2 1/2 years. The past few weeks are no exception. With both of us being scared, stressed and worried, we have been arguing a lot lately and that's not something I want to do. I think being in the waiting pattern about the clinical trial is making it harder for both of us. Jimmy is dealing with his mortality and I'm dealing with the potential loss of my husband and my life partner. I want Jimmy to want to get out of bed more. There are days when I feel like he is dying before my eyes. I want him to enjoy every minute he can while he can. Summer is our favorite time of year and I don't want to waste a single minute of it. Sometimes, I feel like I am already a single parent. I no longer even feel like a wife...only a caregiver. I know he hates that I have to do so much for him. I know that he wishes he could provide for us the way he used to do. We argue about money or rather, the lack thereof. I've tried to go to work twice at part time jobs just to bring some money into the house but can't because I'm unable to be dependable since Jimmy's been in and out of the hospital so much. Its a vicious catch-22. Jimmy and I have also done a lot of crying together lately and I am grateful that we have each other to lean on because no one truly understands what this life feels like. I also feel like I'm caught in the middle between Jimmy and Logan a lot. I have found myself in situations where I feel like I'm disappointing one or the other of them. I don't want Logan to feel slighted because I have to spend so much time taking care of Jimmy and I don't want Jimmy to feel neglected or left out when I have to do things for Logan. Again, another catch-22.

Like I'm not already tired of going to the emergency room, yesterday (July 4th) I had to take Logan at 5:00 a.m. to the ER because he was having severe ear pain and pinkish discharge coming from his ear. Because of all of the swimming he's been doing, he's developed a bad case of swimmer's ear. Thankfully, it was a quick trip and we were in and out in about 2 hours. By ER standards, that's like the express line at the grocery store...haha. He is on antibiotic drops and is feeling better today.

Despite everything, I am happy to say that in the last couple of weeks, Jimmy's pain has seemed to be much better under control. Apparently, the methadone is working. It is also a relief to see Jimmy wanting to get out of the house a little. There are days he doesn't want to (like yesterday) but he has managed to get out and sit at the pool a couple of times and to take a couple of walks (in a wheelchair) outside. It might not sound like much but I'll take it. Any chance to do something normal these days is a good thing.

My honey at the pool last week...he appears to be giving me the evil eye...


Today, he sat at the pool for a couple of hours even though he was nauseous and vomiting this morning. He probably should have eaten something before taking his medication with just coffee. His appetite isn't that great anymore and he has to force himself to eat sometimes. Of course, sitting outside wears him out and as I type, he's taking a nap...and snoring...haha.

Again, thank you to everyone that has been praying for our family. Please don't stop. Your support truly means a lot to us.
xoxo

Pneumonia...Hospital...Scans...Bleeding...Hospital

4.28.15

April 2015 = Hell Month

It has been a few weeks since I last wrote but this month has been so hectic that I just haven't had the time or energy to write.

The week of April 6th is Jimmy's week off from chemo and its time for scans to see how the chemo is working. As usual, it seems like nothing is going Jimmy's way. I took him to the ER on the 6th because he had started to run a fever and was coughing constantly. This was very concerning since he had just finished a round of chemo. It turned out that he had pneumonia in his right lung and the doctor admitted him to the hospital. It ended up being a 4-day stay so he could get constant fluids and IV medication.

While he was in the hospital, it was time for his CT and MRI scans. The good news is that the nodules in the lungs seem to be a little smaller. However, the bad news is that the tumors in the abdomen, pelvis and thigh are significantly bigger. Of course, this indicates that the 3 rounds of chemo have not worked the way we had hoped. Ugh. This sucks. We spoke with the oncologist at the hospital as well as Jimmy's oncologist from Penn and the conclusion was to have Jimmy start inpatient chemo with VP-16 and ifosfamide treatment. This would not start until he was healthy and recuperated from pneumonia. Jimmy is not looking forward to this treatment. We know this won't be easy for him because this is a very harsh treatment. He has already been through so much and his body isn't what it was when he had inpatient treatment two years ago. Jimmy came home from the hospital on the 9th and it took several days for him to start feeling better and his cough to subside. He was expected to start chemo on the 20th, provided he was healthy enough to do so.

Here's Jimmy being a little silly with his shirt on his head while getting ready to leave the hospital...



On April 17th, our friends hosted a Designer Bag Bingo fundraiser for us and it was a lot of fun and a night out for me with friends. Jimmy could not make it because he still wasn't feeling well. I can't say enough about how grateful we are to our friends who went above and beyond to make the evening a success. There are too many to name individually, but I would like to thank everyone for all of their hard work. On a side note, there was only one tie of the evening in a round of bingo and, as luck would have it, I was one of those in the tie. Sadly, the other person won the tiebreaker and got a beautiful handbag. :( All in all, it was a great night.

Jimmy was feeling better from the pneumonia as the days went on but decided to postpone chemo for another week. His oncologist agreed with this and felt like Jimmy should be healthy enough to start the regimen or it would have to wait anyway. So, the plan now is for chemo to start on April 27th. Although the symptoms from pneumonia were better, Jimmy had also started to have severe pain and swelling in his right side. The pain got progressively worse and the swelling continued and by the 21st he was in the bed literally screaming in pain. This went on for a couple of hours until Jimmy finally decided that he needed to go to the ER. I called the ambulance and in they came once again. I swear I feel like I should add them to my Christmas card list at this point since they've been here so much. Even though Jimmy has a port, they needed to start an IV because their protocol does not allow them to access the port. Jimmy's veins are so beat up that it is very hard to get an IV started. It took the EMT a few tries and he still couldn't get it in before they left for the ER. The absolute worst part of all of this was Logan being there to see all of it. He has never seen Jimmy being dragged out of the house on a floor stretcher nor having to watch while all of the people crowed around Jimmy and invaded our house. I kept asking him if he wanted to leave the room and he said he wanted to stay. I was trying to be there for Jimmy and Logan at the same time. I continued to make sure Logan was okay during all of the mayhem. Please don't judge and say that I should have gotten Logan out of the room. It was all I could do to try and make sure everyone was being taken care of, including find a place for Logan to go spend the night so he wouldn't have to go to the hospital. I truly didn't have time to second guess my decisions. Even the dog seemed to be incredibly worried. He has also been very clingy in the days leading up to this and I truly believe that he knew something was wrong.

It was 11:30 p.m. before Jimmy got to the hospital. His pain continued to be through the roof. It took a few hours to get it under control. Since he had gotten scans about 10 days before, the doctors wanted to take a look at them to see if there could be any reason why he was having so much pain. Everything has been on his left side up to this point and his having pain on the right side is new. I got Jimmy's on-call oncologist on the phone and she told me that she received a message that the scans showed abdominal bleeding and that they could be consistent with metastatic disease. Not the news we wanted to hear. I told Jimmy and he was devastated. How much more can we take? He said that he wouldn't do chemo if it was a new tumor. By 4 a.m., the decision was made to admit him to the hospital and transfer him to Pennsylvania Hospital the next morning.

I went home and slept a few hours but was able to see Logan before school and bring him his lunch. He was incredibly worried but I assured him that Jimmy was in the best place possible.

Finally, good news. The doctors decided to re-scan Jimmy and have the local oncologist and his Penn oncologist review them. They determined that it was not another tumor but a hematoma, which a a collection of blood outside of a vessel. The doctors seem to believe that it was caused by all of Jimmy's coughing with pneumonia. Since his left abdominal muscle is missing, the right one had to take on all of the pressure from the coughing. This caused a tear and significant bleeding into his abdominal area and created lots of pain. The reason the bleeding was so significant was because of the blood thinners he has been on. Needless to say, he's no longer on the blood thinners. Thankfully, through all of this they were able to keep his pain somewhat under control. His side continued to be extremely painful as well as the tumor sites. Here's a picture of the bruise on his side where the hematoma is located...



By the second day in the hospital, Jimmy was still feeling pretty crappy and was very pale and weak. His hemoglobin level was extremely low so he had to have a blood transfusion. It was a little weird to know that he was getting someone else's blood. It did seem to work and his blood level came up a little bit and he was looking a little better. However, the doctor decided that the level wasn't where it needed to be so he received a second blood transfusion the next day. Thankfully, by the next day, his levels were at acceptable levels and he didn't need another transfusion. Also, he was off of his IV pain medication. Every little thing they disconnect means that he's one step closer to coming home.

The only other thing that was a setback was the fact that Jimmy was back walking with a walker and using the shower chair again. It seems like two steps forward and one step back. I'm sure it will be a short-lived setback and that Jimmy will be getting around without the walker soon. Jimmy is tired of being in the bed all of the time and I know this will be motivation for him to get up and about as soon as he is able. Well, by Saturday, April 25 in the late afternoon, he was able to come home. He was very tired and still very sore but relieved to be home and sleep in his own bed.

It is now April 28th and Jimmy is getting around, for the most part, without the walker. The chemo that had been scheduled for the 27th has once again been postponed. As much as we want chemo to start so that, hopefully, it will slow down the growth or even stop the growth of the tumors, Jimmy has to be healthy enough to withstand it. This week Jimmy is just resting and letting his body heal. The doctors said the area where the hematoma is will take months to fully heal but we are already seeing improvement just with Jimmy's ability to move around a little better. We meet with his oncologist later this week and he will determine then if Jimmy is able to start chemo next week. I hope so.

As for me, I feel like a broken record continually saying that I'm tired and exhausted but its the truth. I take a nap almost every day. I know its because I'm truly tired and a little bit depressed. I feel like I'm barely holding it together these days. Thank goodness for therapy and medication. With Jimmy in the hospital twice this month, it has been hard to keep life normal at home. I am wearing a boot on my left foot because I have an Achilles tendon issue at the moment and it slows me down, not to mention my ankle hurts. I can't afford to be sick or hurt and this is supposed to take the pressure off of my foot and let the tendon heal. Logan has a swim clinic going on right now and he swims 3-4 nights a week. Its very important to me that he stay with his regular routine. He is effected by this too much already. This means I'm out of the house on my way to the hospital when Logan leaves for school just so I can be there when the doctor makes his rounds. I stay there all day and make sure Jimmy has breakfast and lunch because he wants coffee from home and he won't eat the hospital food. I then have to get home for Logan and let him do his homework, feed him and take him to swimming. Logan has had a doctor's appointment this past week and visited Jimmy in the hospital too this past week. Whew! I'm tired all over again just typing it. What I am most tired of is having to do everything. I feel like a single parent with two kids, with one being disabled, at this point. Don't get me wrong, I love Jimmy very much and I don't mind taking care of him at all but instead of his helping me with the normal day-to-day things, I'm taking care of him because he can barely get out of bed. Just bringing in the groceries or taking Logan to and from swimming by myself seems so much harder without his help. This may sound trivial but we've been dealing with this for two years and things aren't getting any easier. In fact, things seem to keep coming faster and with more negativity these days. Basically, I'm tired of this shit. I want my husband back. I want our life back. I want to stop being depressed. I want to be less stressed. I want to stop worrying about what the future holds for my family.

Thankfully, Jimmy is home. He is having an okay day and for that I am grateful. It is beautiful out and the temperature is warm. I choose to look at the bright side of life today and not dwell on the negative.

As always, I thank all of you for your support and kind words of encouragement. Please ignore the typos and please continue to pray for my family. xoxo

Oh, and...

Round 3 of Chemo is Over...Insurance Hell Again

03/27/2015

It was a tough second round of chemo. Jimmy went into this round still having a lot of pain and barely able to get around. The car ride to treatment creates a lot of discomfort for him. He got really tired and took a lot of medication during this whole round. To make matters worse, on all 3 days we had to go to Philadelphia, we left at rush hour and it took forever to get home. All in all, we are glad that round 2 is over.

We were both looking forward to Jimmy starting to feel better and have a week off from treatment and on the off week, his port incision opened up and his port was exposed. We had to head back to the hospital in Philadelphia on 3/17 for them to surgically remove the port. There is always an issue getting an IV in because his veins are shot. The nurses stuck him 5 or 6 times before someone informed them at the doctor was going to give him a local anesthetic and he wouldn't need an IV. Thanks for the unnecessary pain nurses. They decided that they couldn't put a new port in for fear of infection, so they put him on antibiotics and sent him home. The replacement port was scheduled the following Monday, 3/23 so that he could continue with chemo as planned. Jimmy was not looking forward to this procedure. He has already been through so much and having 2 surgeries in one week is so taxing on his body. Jimmy continued to have pain and trouble getting around throughout the week. Needless to say, this was not a good round of chemo physically or emotionally.

The new port was put in on 3/23 as scheduled. Since Jimmy was an add-on for this procedure, we waited about 2.5 hours before they finally took him back. Once they started, it didn't talk very long at all. And, thanks to one great nurse there was one stick and the IV was in with minimal pain. It was a very long day but it went well. Jimmy is ready for Round 3.

Throughout all of this round, I've been living in insurance hell. Every single time I go to the pharmacy, there is an issue with the insurance, either with prior authorization for the narcotics or them saying the the pill limit for the month has been met. I have literally, again, spent hours on the phone with the insurance company and the doctor's office and at the pharmacy waiting for medication. The doctor's office say they requested the prior authorizations from the insurance company and the insurance company say they never got the request. I get to the pharmacy and they try to get the prior authorization. If that does happen, there is always an issue where the insurance won't approve the total number of pills in the prescription because Jimmy's already gotten so many for the month. Therefore, he gets a partial prescription and the rest of it is voided. And the cycle continues. This is so stressful when I have several medications a month to get for Jimmy, including the 3 narcotics. It is a never ending vicious cycle which seems like there is no end in sight. You would think it wouldn't be so hard because we are still on our private plan insurance which is Blue Cross and expensive, but its really terrible. Since we did get on Medicaid, we can stop paying for insurance which will be one less expense we have to worry about every month. However, Medicaid does not go into effect until 4/1/15. I can only hope that it gets a little better.

4/5/15

Well, Round 3 ended this week and it was tough. The chemo is really hitting Jimmy very hard. After the treatment on Day 1 of the cycle, Jimmy is wiped out. He is tired and still in pain. Most days he's in the bed and others he alternates from the best to the sofa. For the next week, he had to use ice packs on his knee and groin area and the swelling has returned to his knee and foot. The good news is that he has been able to shower standing up as pee standing up most of the time. Ok, I know that was TMI but its all part of it. Another good thing is that he hasn't totally lost all of his hair. We are truly grateful for these positive little things.

As expected, I had more issues getting Jimmy's medicine again. I really unloaded on the secretary at Jimmy's doctor's office because I have had just about enough of fighting to get him his medicine to keep him from being in so much pain. She actually started arguing with me on the phone telling me that the pharmacist never calls the insurance company...which they do every time. She insisted that she had sent in the prior authorization and pill increase requests to the insurance company. Frankly, I don't believe she did. If she did, then why would the insurance company say they continually didn't have it? I spent an entire day calling her and the insurance company trying to finally get it all straightened out to no avail. While I realize that we are not their only patient, we are still a patient and they need to do their part to make sure Jimmy is comfortable and not in pain. Its uncomfortable when we are in the office and the nurse laughs about the amount of medicine he is taking to keep the pain under control. I feel like she is mocking us or thinking that we are making up the amount of pain that Jimmy is in every day.

On Day 8 of the chemo, Jimmy went in already very tired. The benadryl they give him in the beginning really made him very sleepy and groggy. While he was getting his chemo, I wanted to go to the local pharmacy down the block from the doctor just in case there was a problem with the insurance again. As expected, there was a problem...yet again. So, I ended going back and forth to the pharmacy 3 times before I finally got medication for Jimmy. I didn't even care that I was bugging the nurse at the doctor's office anymore. I wanted her to understand just what I've been going through and I think she finally got it. Because I could only get partial prescriptions, the rest of them were voided out and the nurse said she would have new ones waiting for us when Jimmy finished his chemo. You can't imagine how angry I was that I spent the entire 3 hours of Jimmy's chemo trying to get Jimmy's medication. Well, chemo was over and we went to pick up the scripts at the desk on the way out. Guess what?! You guessed it! They weren't there and the nurse was nowhere to be found. O.M.G. Jimmy is exhausted and feeling like he's been hit by a truck after 3 hours of chemo and the nurse made us wait for AN HOUR to bring us new scripts. I was ready to spit nails at this point. Lucky for her, when she finally did come out, I was on a phone call that I couldn't get off of and I completely ignored her. If I didn't, I swear I would not have been responsible for my actions. The office's patient services is sorely lacking and I'm fairly certain they know I think that.

Jimmy has been feeling pretty bad all week. The Neulasta shot I gave him on Day 9 has really made every bone in his body hurt. He is really chemo'd out and has been in the bed most of the week. Since the weather is getting nicer, I did get him to go for a ride one day to just get out of the house and get some fresh air. He said that it felt good to get out to go somewhere other than the doctor or the hospital. Of course, as luck would have it, I've been sick for about a week and a half with a sore throat, headache, body aches and exhaustion. I was afraid I was getting strept throat so I finally went to the doctor. Instead, I have a vicious sinus infection and the doctor put me on antibiotics and nasal spray. Thankfully, I am now feeling much better and happy to not have had strept. We can't afford for Jimmy to get sick, especially while his white blood cell count is down. HOWEVER, yesterday Jimmy said that it hurts to breathe. He has started wheezing and there's a whistling sound when he breathes. I'm worried it will turn into something else. He hasn't been running a fever so that's a good sign that it might not be anything to worry about. Of course, I take his temperature about 10 times a day just in case.

As for how Logan is doing, I know he misses doing things with Jimmy and hates to see his Dad laying around all of the time. When we went out for a ride, Logan was really happy that all three of us were going out together. We were only out about 1/2 hour but it was good for all of us to just be together outside to enjoy the nice weather. Also, this week was Logan's parent/teacher conference. When I looked through his paperwork, I saw a report he wrote about cancer as well as a poem he wrote about his Dad having cancer. I really hate that he is so effected by all of this and that he has to carry this burden with him all of the time, even at school. At least he is venting about it and that's good.

As for me, I'm still an emotional mess. I worry all the time about Jimmy. Every time he's sleeping, I always look to make sure he is breathing. I'm worried about Logan and how to keep his life as normal as possible. I'm worried about money and bills all of the time. Thankfully, friends are putting together a Designer Bag Bingo fundraiser on April 17th for us. I've never been to one but it should be fun to get out for a night and maybe win a new purse. The fundraiser couldn't come at a better time too. I mentioned earlier that we were able to get on Medicaid, which we are eligible for through the county and that started this week. Thank goodness. We were also eligible for food stamps, which is another big help, especially since we still have no income. Its embarrassing and very humbling but so many have reminded me that we have earned this help by paying into the system all of our working lives. It doesn't change the fact that I still cringe every time I have to go to the grocery store. I'm so self-conscious about paying and I feel like the cashier looks at me weird or something. Friends have also given us gift cards for various places for food and gas and we are so grateful for the help. Many people have also donated on our fundraising site and we thank all of you for your kindness and generosity. It makes it a little bit less stressful for us.

Well, now that Round 3 is over, Jimmy will have scans this week to see how the chemo is working. Best case scenario is that the chemo is shrinking the tumors. While we know that sarcoma is resistant to treatment and didn't really shrink the tumor last time, there is always a chance it will. If the tumors aren't shrinking but haven't grown any, that's a win. That means the chemo is stunting the growth of the tumors and that's a good thing. But, if the tumors are still growing, the doctor said he would have to try something else...maybe another treatment of chemo or even a clinical trial, if one is available. I'm choosing to believe that the tumors are not growing any more. I'll stick with the happy medium which is still good news. Fingers crossed! I will post when we know something.

Lastly, it is the evening of Easter Sunday that I am finally finishing this blog post. It was a quiet day at home with Jimmy's Dad coming over for dinner. I want to once again thank all of you for your prayers and support. Through God's strength, we have certainly felt your presence in our life and for that we are eternally grateful. Please continue to pray that Jimmy's scans next week show positive progress and that the cancer is not growing. Much love.

1st Round of Chemo Over...Pain and Exhaustion Persist

2/25/15

Well, last Wednesday, Jimmy completed the first full round of chemo. We had to postpone the treatment from Tuesday because of the weather. Its not bad enough Jimmy is going through chemo, we have to worry about the weather allowing him to even make it to the treatments. This time he got both chemo drugs, Gemzar and Taxotere, along with a host of other drugs. This treatment took about 4 hours and left Jimmy tired afterwards.

The next day he was scheduled for his Neulasta injection, the shot that helps boost his immume system and costs $3,000 for one shot. That morning he had a severe pain episode and we weren't sure whether or not we would have to go to the ER or not. I called Jimmy's oncologist and they said to come in as soon as we could so they could evaluate him. They said he may need to have IV fluids for hydration or that his pain medication wasn't working well enough. Well, we made it there and he was able to get his injection. It was determined that he wasn't getting enough pain medication to keep the pain under control. Here we go again...I see another fight with the insurance company in my future.

As predicted, I spent 2.5 hours and when to 2 pharmacies to try to get his medication...this was done during treacherous driving conditions...why wouldn't it be?! Of course, due to insurance restrictions, I wasn't able to get everything that Jimmy needed. This is such bullshit. I am so tired of fighting to get Jimmy the medication he needs. If I call a pharmacy to see if they have what I need, they either tell me they can't tell me if they have it or that they don't have it at all. I guess I'm just expected to drive around from pharmacy to pharmacy until I find one that a) takes our insurance, b) has the medication in stock and enough to fill the medication (most don't have enough), and/or c)is willing to call other pharmacies if they can't help me. It is a nightmare every time I have to get medication for him. If I get to a pharmacy that doesn't have enough of the medication and I decide to get what they have, it voids the rest of the prescription so I have to go back to the doctor to get another one...of course, that means driving an hour to Philadelphia to get it. Ugh.

In the past week, Jimmy has continued to be in pain...off the charts kind of pain...and we have contemplated the ER a couple of times. He is feeling very weak and chemo'd out. The metallic taste in his mouth is back and food is starting to taste funny to him. At this point, Jimmy is either awake and in excruciating pain or asleep and out of it from the medication. He is having a zero quality of life right now. I just want him to have some pain relief...and soon. It seems like the pain in his left groin/hip and knee area is in pain all of the time. He has started having pain around to his back on the left side as well. It seems like the chemo isn't doing anything. I thought by now, some of his pain would start to subside...not get worse, which is what is seems to be doing.

Yesterday, I had to take Jimmy to have blood drawn to check his levels and it was all he could do to shower and get out of the house. Just showering (he's using the shower chair again because he can't stand for that long) wipes him out. Getting around the house is very hard and he walks so slow...like a little old man...and sometimes he has to lean on me to walk. It breaks my heart to see him this way. I still can't believe this is our life.

Jimmy has been very depressed and I know he is ready to just give up. While I know he won't, he realizes that Logan needs him for as long as possible. That is both of our priorities...making sure Logan's life stays as close to normal as possible. Its been hard and, especially since Logan is aware of everything that is going on, it continues to be hard. Logan, however, seems to be doing okay. I know he is sad and is tired of seeing his Dad so sick but he really does seem to be handling it well.

As for me...well, here goes my selfish rant about how I feel...its been a rough couple of days...

I am so sick of this shit. Our life sucks. I am tired and exhausted every single day and there are days I wish I could just stay in bed with my head under the covers and pretend that this isn't happening to our family. I am tired of being a grown up. I don't like feeling lonely but I need time alone. I want someone to take care of me once in a while. I'm tired of not being able to cry in my own home, because it isn't fair to Jimmy or Logan. Jimmy has said he doesn't want to see it and that he needs me to stay positive. For obvious reasons, I don't want to get upset in front of Logan. I want to guilt-free leave the house to do something fun once in a while. I wish we had disposable money to spend or, at this point, just money to pay our bills. Jimmy doesn't want me to say anything about that but, guess what, this is my blog and my rant. We are struggling financially in a way I never thought possible. We used to be able to take two vacations a year and buy what we needed and more. Since Jimmy got sick 2 years ago, thankfully we had savings we could use to live on when he couldn't work and the business wasn't working. We were very lucky to have a backup to help us because I know so many people don't but now that reserve is gone. It scares the shit out of me that we now worry about how to pay our household bills. Jimmy can't get social security disability and there are hardly any programs out there to help us. We fall through the cracks...we don't have money now but because we did in the past, we are excluded from help. Our next step is county assistance...talk about embarrassing. I can't go to work right now because Jimmy needs me to take care of him. I will post our fundraising link here because, at this point, I have no pride left. This is not who I am...I don't like to ask for anything but we need help and I am asking you to help my family. I hate this. I also find myself being envious when I see my friends doing fun things with their families. I can barely hug Jimmy without causing him pain. I see life moving around me but feel very disconnected to it. Right now, I don't want to know if anyone else is sick, or hurt, or tired...frankly, I don't give a damn. Unless you are living our life, you have no idea what its like. It sucks like nothing you could every imagine. I am tapped out for sympathy for others right now. I know I sound like a selfish bitch but, guess what, I don't care. Tomorrow, I may feel differently, but right now I don't give a shit about anyone else. My only concerns right now are Jimmy and Logan. Okay...bitchy, selfish rant over.

There are some positives though...I do have one girlfriend who has gone over and above to make me feel special and pampered without pitying me...thanks Jade! I have another friend who helps me constantly with Logan and for that I am so grateful...thanks S. And, of course, without you, Lisa, I have no idea what I would do when I feel like crying my eyes out...even though you live so far away. I am grateful for all of the support and prayers we have gotten from people we know and people we don't know. I have found making friends from the Facebook Sarcoma groups has been helpful. There are people going through the same thing at the same time and there is comfort in that so you don't feel so alone. I am grateful that Jimmy is still here and I can touch and kiss him and tell him I love him. I thank God every day for my son, who is so sensitive and caring and does everything he can to help me and make me feel better. A hug from Logan seems to make it all better, if only for that moment and that's good enough for me.

Jimmy's next chemo treatment is next Tuesday and I will keep you posted on how that goes...thank you for listening...again. xoxo