Its a New Week...Less Pain...Less Pity

9.18.14

It has been several days since my Pity Party Post (say that 3 times fast!) and I want to update how Jimmy is feeling.

In the past week, Jimmy has been going to radiation...he goes 5 days a week...and yesterday, the radiologist said he believed the tumor looked like it has gotten a little smaller.  Woo hoo!  The pain seems to be a little better too, which is a relief.  Jimmy is very tired though.  The doctor believes it is a combination of the medication and the radiation making him so tired.  They are weaning him off the steroid and the nerve blocker medication hoping that will help somewhat with the side effects he's been having.  Speaking of side effects, this week has been a rather stinky week...I don't mean crappy either. ..well that's really a poor choice of words.  Apparently, the radiation is causing some gastrointestinal issues for Jimmy.  Since the radiation goes through his pelvic area to get to the tumor, it also goes through his bladder, colon and intestines.  Therefore, some issues come along with that, which is something the doctor told him to expect.  Let's just say that I haven't been spending too much time in the same room with Jimmy for any length of time...if you know what I mean!  LOL

I also wanted to post a couple of pictures of what one of Jimmy's medications is doing to his body. The medication is his blood thinner that is given as an injection.  He has to get these injections twice a day.

This is a bruise on his left side.  This bruise is about 6 inches long and about 2 inches wide.

This are the needle marks on his right side from the injections.  They bleed and leave little scabs...yuck I know.

Other than the ongoing bruises, the only scary thing that happened this week was yesterday morning.  Jimmy was sleeping on the couch (he often goes out into the living room to sleep when he wakes up in the middle of the night).  He has been having trouble sleeping and is having really bad night sweats again.  The night sweats are so bad that when he wakes up his clothes are soaked as well as any pillows or covers.

Anyway, I made coffee and went to bring Jimmy a cup.  He was sitting up on the couch but when I tried to hand him his cup, he didn't respond.  At first, I thought he was teasing me and just pretending to be asleep.  I kept trying to wake him up but he didn't respond.  I made sure he was breathing...which he was...but I started to get scared thinking that something was wrong.  I squeezed his left leg (the tumor leg) and he didn't move.  This was very unusual since there is pain/numbness in this leg and he doesn't like for me to touch it.  I smacked his cheek and he still didn't wake up.  I even pulled his eyelid up to try and get him to respond.  This went on for a minute or so (even though it seemed like forever) and then he finally woke up.  He was really groggy and it took him a few minutes to become fully awake.  Talk about scared...I was scared.  Logan was in the room and he even came over to see if he could help.  Of course, I was trying not to show how scared I really was in front of Logan.  I don't know what happened or why Jimmy wouldn't wake up but, hopefully, that won't happen again.

As for me, I'm not so weepy this week.  I am still very sad about what Jimmy is going through but it has not consumed me this week.

I also want to mention a couple of other people that live near me.  A young mother with children in Logan's school passed away this past week from cancer.  She was way too young and she left behind a husband and three children.  I did not know her but from everything I've heard, she was liked by all who did know her.  Also, good friend's wife has been diagnosed with cancer.  It was originally found in her lungs and eye but it is now in her pelvis and spine.  She is a wonderful wife, mother and grandmother.  I mention these two families because I ask that you add them to your prayers.  This is such a horrific disease and, as you know, it is not selective in who it chooses.

Thanks again for those of you who have reached out to me personally and expressed your thoughts and support.  Your prayers are appreciated more than you know.

Having a Pity Party

9.12.14
It has been a very emotional week for me.

Before I get into that, let me update you on how Jimmy is feeling.  His pain is being managed pretty well with medication at this point.  He has had 7 of his 25 radiation treatments so far.  Hopefully, the radiation will kill the tumor and maybe even shrink it (even though it didn't shrink the last one in his leg).  He has a slight limp when he walks and he gets tired easily.  If you knew him and saw him now, you would think he looks a little tired.  All of this is very taxing on his body and it literally wears him out.

We talked to Jimmy's surgeon this week and she seems very concerned about him.  Given the emergency room incident last week and the blood clots in his lungs, she is afraid the blood clots might come back and is thinking he may need a surgery to place a mesh insert in the femoral vein to keep blood clots from traveling to his lungs again.  The doctors literally told us that he would have died because of the blood clots if he had not gotten to the hospital when he did.  Jimmy's surgeon is afraid of a repeat performance of the blood clots if this surgery isn't done and she wants to make sure that he makes it to the big surgery to remove the tumor.  We trust her...the surgeon is Dr. Kristy Weber at the University of Pennsylvania Hospital.  She is the Chief of Orthopaedic Oncology and Director of the Sarcoma Program at the Abramson Cancer Center.  Basically, she is really the best at what she does and, if she says Jimmy needs this surgery, he will have it done.  She told us that she has consulted with other experts and will make a decision soon about scheduling this surgery.

Now, on to my pity party...

The day after Jimmy came home from the hospital I lost it.  I don't mean a few tears either.  I mean heaving and crying so hard I was shaking that lasted a long time.  I did it while clinging on to Jimmy in full sight of Logan.  While that might not be the right thing for some, it's what happened.   I just couldn't help myself.  It ended in one big group hug with me, Jimmy and Logan.  That was the best part of my breakdown.  Me and my two boys know that we are in this together, no matter what.

As for me now, I am incredibly sad.

I met with my therapist this week and she told me it was okay to be sad and to feel sorry for what is happening in our lives.  There is a part of me that feels really guilty for being so sad.  I mean...how dare I not be strong?  Does it make me weak for being sad?  What kind of wife/mom am I that can't be depended on to make things right?  What I realize is that its OKAY to have these feelings.  It doesn't make me weak or inferior, it makes me human.  That was a very hard realization for me.  I always want to be the one to take care of things and to realize that sometimes I can't do it all is hard to accept.

Every day this week has been very depressing for me and I have done a lot of crying.  I am just so scared that I'm going to lose Jimmy.  I am not ready for that.  I am not ready to face life without him nor am I ready for Logan to face life without him.  After last week, that's all I think about.  And, after talking to the surgeon and her being so worried about the blood clots, that didn't help either.

I'm not sure why but today was the first day all week that I didn't feel quite so sad.  Today was the first day I didn't cry this week.  The sun was shining and the sky was blue and I'm thinking that may have been one of the reasons.  The day was so bright and seemed so full of hope.  Whatever it was, I'm glad that I felt a little better today.

Again, I am going to say thank you to all of you who continue to support my family...both near and far...all 56 countries of you.

In closing, I have one thing to say...

From Jimmy

9.6.14
This is from Jimmy...

I am sharing this not for sympathy for me. I am sharing this for all of the people who take the time to read this. No matter how much life seems to make you angry, money problems, someone cuts you off on the road, dealing with brain dead idots. Be VERY thankful you are alive and your family is healthy. Life is good. Enjoy every second. My wife has been a rock in the past week, and has done a wonderful job of expressing what we are dealing with. Bottom line, be thankful for what you have. I am. It can get worse. FAST. So please, relax, tell everyone you love them, it's okay. Enjoy life!!

Cancer Pain is Hell

9.3.14
The good news is that Jimmy's chest pains have subsided...so the assumption is that the blood thinner is working on the clots in his lungs and his femoral artery.

He did have a fever last night as well as night sweats so that is still a little concerning but not altogether unexpected.

As for the pain, can you say...O.M.G?!   The pain has been excruciating for Jimmy and he is having a tough time of it.  The pain at the tumor site is a constant pain but he has also been getting these sharp, burning pains that go from 0 to 60 in the snap of a finger where it feels like his knee cap is going to explode.  I have never seen anyone is so much pain while taking so much pain medication.  Nothing is working...and I mean NOTHING.  I talked to the nurses and doctors and tonight the doctor decided to stack one of the stronger pain medications to give it a little umph, along with an anxiety med and IV tylenol so he could get some rest.

9.4.14
Thankfully, the med stacking last night seemed to work enough to let Jimmy rest a little but he can't continue to take the medication that way.  It is just drugging him up and making him loopy but not really getting to the root of the pain.  He is taking 3 different pain medications, something for anxiety, a blood thinner, a nerve pain medication and an antacid because a couple of the meds can cause stomach problems.  It sucks to have to take more medication because of the side effects of the original medication.

The pain seems to be getting worse instead of better and the tumor site appears to be getting bigger and bigger every day.  Please God help Jimmy!  The medication is not working and something needs to be done now.  I can't bear seeing him like this.  He is literally writhing in pain and cannot get out of bed without help.  He is having to sit to take a shower and brush his teeth because he cannot stand because it hurts too much to stand.  Jimmy is such a strong force in my life and to see him like this makes my heart very sad.  He is my rock...its not supposed to be the other way around.

I have also been talking to the radiation oncologist on a daily basis, since Jimmy was supposed to start his radiation yesterday.  Because of his pain level and the blood clots, they wanted him to wait.  It is a catch-22 right now because radiation is the one thing he needs because it would be the thing that would help to alleviate his pain but because of the pain, they don't want to start it.  In my conversation this morning with the radiation people, they said they could fit him in if he felt up to it.  He still had to do the dry run for radiation but they said they could do that as well as his first dose of radiation.  THANK GOODNESS!  Finally, some good news...radiation has started!!!

Jimmy decided to go ahead with the treatment despite the pain.  The nurse gave him in medications so that he would get optimum relief while getting is radiation.  He has to lay flat on a hard table and that is not something he can do easily given where the tumor is located, even without the pain he has been having.

Later in the day, the chief oncologist came in to visit to discuss options to manage Jimmy's pain.  It seems that the pain is stemming from the tumor pressing on nerves.  That is causing the constant pain and the intermittent sharp, burning pain.  He and the internal medicine doctor decided to give a steroid a try to see if it would take the pressure off of the nerves.  They would continue the other pain meds as well.  They also said that once they were able to get the pain under control, he could go home.

Well, within a couple of hours after Jimmy took the steroid, the pain began to subside.  By dinnertime, he was feeling so much better.  I can't believe it...this is working!  Something is finally working!  Thank you Jesus!

By the time, Logan and I left to go home, Jimmy looked more relaxed and relieved that the medication had finally started working.  Fingers were crossed that he would continue to feel better throughout the night.

9.5.14
When I called Jimmy this morning, he said he had a good night and was able to finally get some restful sleep.  Woo hoo!!!

He had his second radiation treatment and then the doctor said he could go home today, since he was feeling so much better...and that makes all of us very happy.

This has been a very stressful week.  Jimmy was literally at death's door.  If he had not gotten to the hospital when he did, he most likely would have died due to lack of oxygen.  That thought terrifies me.  I am so exhausted from being so stressed out all week...I'm even feeling a little numb too.  This has been our life for almost 2 years.  It feels like this cancer is taking bits and pieces of our lives slowly and painfully.  This cancer is unrelenting and it is so draining on all of us.

I HATE CANCER.

I know how hard it is for Jimmy and I to deal with, so I can only imagine how hard it is for Logan.  He came home yesterday from school with this questionnaire to fill out about his likes and dislikes regarding school, his friends, his free time, etc.  There was also a question "What makes you sad?"  Logan's response was "When my Daddy's in the hospital."  It brought tears to my eyes when I read that.  I wish so much to be able to shelter him from all of this but I know I can't.  I will say again what Logan said the other day on the way home from the hospital..."I just want this to be over."

Please continue to pray for Jimmy's healing and for Logan and I so that we have strength to get through this horrendous battle once again.  

xoxo

Had to call 911 last night...off to the Emergency Room

9.1.14
Well, last night around 9:00, Jimmy called to me from the bedroom.  I went in to find him drenched in sweat and white as a ghost.  His color was so pale that it seemed to have a green tint to it.  He breathing was shallow and he was dizzy and nauseous.  He said the pain in his leg and chest was excruciating.  He couldn't even sit up.  He said he went in to kiss Logan goodnight and when he stood up, his symptoms started all at once.  I knew as soon as I saw him that we needed to call the hospital.  Jimmy said no...my strong husband trying to pretend its going to be okay. Within a couple of minutes, he said "call 911".  I was terrified and just knew this was it.  I have never been so frightened in my life.  I was so scared I forgot how to dial "911".  My fingers just froze.  I finally snapped out of it and called for an ambulance.  It seemed like it took them forever to get here but I'm sure it was only minutes.

In the meantime, I ran to tell my neighbor to see if she could stay home with Logan, so I could go to the hospital with Jimmy.  I called my in-laws to let them know what was happening.  I put the dog outside per instructions from the 911 dispatcher.  I put clothes on (since I was already dressed for bed) and all the while continued to check on Jimmy to make sure he was still breathing.  And then the panic set in.

The ambulance finally came and because Jimmy could not sit or stand, they literally had to drag him through the house and down the stairs on a stretcher.  Finally, the ambulance took off with lights and sirens blaring while I attempted to keep up with it without breaking any traffic laws.  Of course, everyone on the road insisted on driving slow in the passing lane...ugh.

I finally got to the hospital and went to Jimmy's room in emergency.  He looked really, really bad.  He was still very pale and his oxygen level was about 3/4 of what it should have been.  Jimmy got poked and prodded, had blood drawn and they took a chest x-ray.  The x-ray came out clear but they also wanted to do a CT scan to make sure.  They gave him more pain medicine to try to get that under control..  I ended up staying at the hospital until almost 2 a.m. when he was admitted to the hospital and brought to a regular room.

9.2.14
My first thought this morning was Logan.  He literally slept through everything that went on last night...the ambulance people, the police officers, my neighbors and my mother-in-law.  He never even moved...thank goodness.  Today was his first day of school and he was so excited to go back.  And, I didn't want him to worry about Jimmy.  The morning went by and Logan just assumed Jimmy went to work, so I never mentioned anything to him.  He was so happy and excited that I didn't want to ruin his day.  Please don't judge...I felt like it was the right thing to do.

The morning was crazy...I had to get Logan off to school...talk to numerous doctors, including the surgeon and the radiologist... not to mention family and friends.  I felt like I was putting out fires with bare feet all morning long.

When I talked to Jimmy, he said he had gotten some rest but that he still had a lot of pain in his leg and that it was hard to breathe.  He said they had put him on oxygen overnight too.  By the time I got to the hospital, he had already had his CT scan of his chest.  The doctor came in and told us there were blood clots in his lungs and that is what was causing him to have shortness of breath and pain in his chest.  He said they would start him on a blood thinner to help dissolve the clots.

The radiation team called too.  They said they are ready to start Jimmy's radiation on the tumor tomorrow.  I really don't think that's going to happen.  As much as radiation needs to start, I don't think Jimmy is strong enough to have it done.  I will be very surprised if the doctors say its okay.  Right now, they just want him immobile and to rest.

I stayed with Jimmy all day until I  had to go get Logan off the school bus.  I was dreading having to tell him what happened and that Jimmy was in the hospital.  When he got home, he was still excited from the day and he said he had a great first day of school.  I then told him what had happened the night before and that Jimmy was in the hospital.  I saw that he instantly got tears in his eyes and he walked away asking why I kept it from him.  He got mad at me because he thought I was trying to keep it from him.  We have always been honest with Logan about Jimmy's cancer so I do understand why he felt this way.  We continued to talk some more and he seemed to understand why I did what I did.  He wanted to go immediately to the hospital to see his Dad so that's exactly what we did.

When we got there, Jimmy told me they had done an ultrasound of his leg where the tumor is located and found a very large blood clot in his femoral artery.  This is the main artery going down his leg and the tumor also happens to be attached to this artery.  Now we knew that this was the reason for the pain, numbness and hypersensitivity he had been having in his leg the past few days.  The hypersensitivity had gotten so bad that if you just touched his leg, he said it felt like you were dragging your nails across it.

Well, we at least know what we are dealing with right now and I am relieved that Logan felt reassured when he went to visit Jimmy at the hospital today.  He told me how much he loved me on the way home and that he just wanted all of this to be over...me too.

Right now, I am asking for your prayers for my family once again.  I am praying that the pain medicine will continue to help keep the pain at a comfortable level, so Jimmy can get some rest tonight and that the blood thinners will work to help dissolve the blood clots.  I pray for the strength to take care of both Jimmy and Logan while we cross yet another hurdle.  Please God, I pray that it is not time for you to take my husband. Not only do I need him but Logan needs him more than anyone.

In ending this post, I say thank you in advance once again for your prayers and support.  xo