Monday, February 25, 2013

Fought a good fight...

My sweet husband Paul passed away at about 3:45 a.m. today. Every day I try to find things to be grateful for.  Today I am grateful that he is out of pain and is very happy.  His spirit is free from a very tired and sick body. Fortunately, his trial is over…I wish I could say that mine was over, but I know that I am just beginning in to a new phase…

Even though, I am glad that he is no longer suffering, my heart feels as if it is breaking into a million pieces.  I feel very lost and lonely inside.  I already miss him desperately and it hasn’t even been 24 hours…the tears have been flowing very freely tonight.  I keep looking over at where he was laying just last night…oh, how I would love to see him…hear him…feel him.  I honestly hope that I am strong enough to do this…this is the hardest thing I have ever been faced with…I can hardly believe that I am a widow.

I am too tired to share much tonight.  I hope I have the energy to write more tomorrow about the things we experienced the last two weeks of Paul’s life.

For now, I just need to say…Cancer sucks!

Wednesday, February 13, 2013

It is time for hospice...

Since I can’t sleep right now, even though I am totally exhausted…I guess I will update the blog. 

Our life was, once again, turned upside down yesterday.  We went to Huntsman to attempt Paul’s 5thround of chemotherapy.  While we met with his oncologist, we discussed how sick Paul has been.  He has still been running low-grade fevers, having severe abdominal pain, and a lot of nausea and vomiting.  The doctor examined him…said he heard no bowel sounds…said Paul’s gut definitely looked more bloated…then he said the news no one wants to hear…”Paul, you have fought a good fight, but it is time to stop fighting…the chemotherapy is not working…you need to go on hospice and let them help you be as comfortable as possible…” 

I cannot say that I was shocked with the news I just heard.  For several days I had feelings that is what the outcome was going to be.  I knew driving down that day we were going to be done…no more chemotherapy.  Paul said he knew the same.

Even though we knew this was coming down the pipe, both Paul and I cried intensely hard.  Every time we would look at each other yesterday we would cry.  I don’t think you are ever prepared to hear that you are going to die soon…

We were fortunate enough to get Paul in with a pain doctor after his appointment with his oncologist.  The doctor made room in his schedule to do a celiac plexus block (this procedure is used for pain control by blocking the nerves which come from the pancreas, liver, gall bladder, stomach and intestine). Paul has had a lot of relief from pain since they did this procedure yesterday.
In the meantime, we are now utilizing hospice.  We are working to “tweak” the medicine for his nausea and vomiting.  That has been very difficult to control.  He has had little pain all day today, but he is still having bouts of nausea and vomiting.
We have been told that he will probably live 7 to 10 days because of his situation…obviously, it could be less or slightly more…it is in God’s hands now.  One of the main reasons why he will go quickly is because he cannot eat or drink by mouth because of his bowel blockage.  He is already so thin and frail.  He is no longer on TPN because it is not used for someone who is terminally ill.  They let us keep Paul on it long enough to give this new chemotherapy drug a chance…I really wished the drug would have worked.
Last night was rather strange…we lay in bed talking about his funeral.  We haven’t talked much about him dying or his funeral because we have been too busy fighting to keep him alive.   It is hard to stop fighting…everything inside me keeps saying there has to be something else I can do…it just can’t be over…I don’t want it to be over…but, he is so tired and weak…he has suffered so much…it has to be over…he shouldn’t have to suffer any longer…this nasty cancer is ravaging his body.
Tonight, after we finished up with the girls valentine cards, we pulled out the video camera and asked daddy questions.  The girls always want to play with the camera, so this was a great opportunity to have some fun as we create a video for future viewing.  We are trying to create memories that are positive for the girls.  This will be fun to watch together and help us to remember just how amazing their daddy was/is!
Right now I am so grateful for loving family and friends.  I am able to do what I do because of all the love and support I am receiving.  Thank you all!

Sunday, February 10, 2013

Trying to make sweet lemonade...

Yes, I know, it is time for an update.  Everything has been so crazy lately that I have been too exhausted and busy to even write.   I am not sure where to begin, so I guess I will just start somewhere.

Paul was hospitalized this past Monday, February 4th.  He has been spiking fevers off and on for several weeks now.  He also had a wicked cough…which progressively got worse.  Each time we went in to the doctor they would listen to his lungs and say he was fine…didn’t hear anything indicating problems. 

We thought Paul’s fevers were related to his chemotherapy, since they had already checked his blood and stool for infections twice, and couldn’t hear anything “crunchy” in the lungs.  He had been following the same patterns each time he had chemotherapy…chemo on Tuesday…very nauseated and sick on Thursday…chills and fever on Friday…start to feel better on Saturday.  He had also been having a sore throat and other flu like symptoms, which can be side effects from this chemotherapy…a bad cough is also listed as a side effect.  So, we all just started to think it was chemotherapy side effects…especially since his fever would come and go.

On Friday,  February 1st, Paul spiked his fever again at 103.5…just like the previous week.  It started to go down a bit, but not as quickly as usual.  He  seemed a bit better fever wise on Saturday and Sunday, but then by Monday morning he spiked another fever of 104….his cough had also gotten much worse.  I called our nurse and told her about the situation.  She agreed we needed to get him up to the Acute Care Clinic at Huntsman as soon as possible. 

When we arrived at Huntsman, Paul’s fever was about 104.5, so they immediately started filling ice packs and putting them around his body to cool him down.  In the mean time they started taking blood and urine to start looking for infection.  We talked to the doctor about his persistent cough.  He listened to his lungs and said he couldn’t really hear anything that sounded like a problem, but he felt like they needed to do a chest x-ray to see if he had pneumonia.  He said that people with compromised immune systems (especially people with cancer) present differently with pneumonia…you can’t always hear it.

Paul’s blood work indicated that there was infection somewhere in his body.  The chest x-ray revealed that he did have pneumonia.  It was mostly in his right lung.  He was admitted to Huntsman Hospital to start on IV antibiotics.  They also started to give him Tylenol via IV.  Paul cannot take anything by mouth, unless it can dissolve under his tongue…this makes it difficult to give him medications at home.  I had forgotten (until they brought it up at the hospital) that there are Tylenol suppositories, but Paul was not too anxious to have something put where the sun don’t shine…if you know what I mean!

On Tuesday, February 5th, Paul and I celebrated our 13-year anniversary together in his hospital room.  I wish I could say it was the best anniversary ever...I can’t say that, but I am grateful that he was alive to celebrate it with me. 

After spending two days at the hospital, I felt like I needed a day to stay home and get things done (laundry, etc.).  I was very tired, emotionally drained, and was missing my daughters.  I wanted to pick them up from school and spend the evening with them…they have been going to many different friends homes to be taken care of.  I felt like I needed to be with them…I needed to be there mommy…we just needed to do something together. 

Sophie is really struggling with all that is happening.  She yells at us a lot and is just plain difficult.  She is very demanding and does not want to cooperate at all. Her little six-year-old brain is just struggling to deal with all this…my brain is having a hard time with all of this, I can only imagine what my children are going through.  I am working to get us in some therapy to help with this situation.

Sophie’s best friend has always been her dad.  She always wanted to be with him (mowed the lawn with him, watched army shows with him, wrestled with him, watched sports with him…yes, she is a tom-boy).  Paul was her everything.  After his cancer returned, she would not go near him…hardly even talk to him.  It was very heartbreaking for Paul.  He cried because he felt so bad.

One day Sophie was sitting on the bed by me.  I tried to get her to move closer to her dad so there was room for me.  She would not budge.  I asked her if she thought she was going to catch is cancer.  She didn’t really respond.  I explained to her that she can’t catch it.  She said she was worried he might catch something she had (there could be some truth in that since she is a germ-a-phobe, but I think she was worried about catching his cancer too).  I explained that it was okay to sit next to him.  She still did not want to move…fortunately, now, after much coaching and comforting her, she will get closer to her dad and tells him she loves him again.  She will sit by him on the bed and watch shows with him again.

Hailey is only nine, but it seems as if she has the ability to look at this through more of an adult point of view.  She was diagnosed with Asperger’s when she was six, but to be around her now, you hardly even see that in her anymore.  She has a lot of wisdom and understanding for her age.  She is handling this much better than we thought possible.  She has actually been a support to me.   Like the rest of us, she has her moments of absolute tears.  Her teacher had to call me the day we checked Paul in to the hospital for Hailey to talk to me.  She was crying…she was very worried about her dad.  I didn’t tell her he had pneumonia because she knew that her grandma had died five months ago from that.  I just said he had a very bad cold and needed to stay in the hospital to get antibiotics (I think she knew that he had pneumonia because she is so smart…she just pretended to believe me that it was a cold).

Let me get back to the story.  A couple of my amazing friends knew that I was having a rough day.  It was one of those days where you cry and cry.  A little while before it was time to go pick up Sophie at school (Hailey would not be home until 4:30 because she went on a skiing field trip with the fourth grade), they showed up at my home with all the makings for a party.  There was a cake, cookies, pizza, balloons, chocolate, a movie and several other goodies.  They knew I wanted to spend time with my girls and have a fun night together.  It was such a blessing.  I knew that my girls would be excited when first, I actually picked them up from school and second, they got home to see we were to going to have our own little party.

I was right!  You should have seen the look on Sophie’s face when I was waiting outside her classroom to pick her up…she ran up to me and hugged me.  Her teacher said he was glad to see me and kind of told me that she has been struggling with being very distracted while at school…she has not been herself.  I told him we were going to have our own little party that night.  He thought that was a great idea.  He even asked if we were going to McDonald’s…my first thought was oh no, why did he say that…now we have to go to McDonald’s because he said that…then I realized I had originally planned on letting them choose what they wanted for dinner (of course, I was hoping it was pizza, but I figured we would eat that the next night)…sure enough Sophie was all over that…McDonald’s it was going to be!  I knew Hailey would be fine with that.

When I got Sophie home, she was thrilled to see the balloons and all the goodies.  It really was priceless!  We had to wait to pick up Hailey at 4:30 and then we would head to Mickie-D’s!  I convinced Sophie to help me clean the guinea pigs cage before it was time to go…that is always such a fun task…not…those little boogers sure do poop a lot…not to mention they don’t smell real nice…good thing they are so cute!

When we picked up Hailey we told her our plans.  She was excited too!  They decided it would be okay to go through the drive thru and head back home to start our party (I must say I was pleasantly surprised with that decision).   We had a great time partying together that night! 

On Thursday morning I headed back up to spend the day at the hospital.  We were hoping to bring Paul home.  They said we could not bring him home unless he had a bowel movement…do you know how hard it is for someone to have a bowel movement with a bowel blockage? Actually, Paul has had diarrhea off and on through this whole bowel blockage…only now his bowels decided not to cooperate…he wasn’t having any movement…

Yes, even if you are not eating by mouth, you still make poopies!  Your bowels continue to shed and release fluids and toxins all the time...therefore, you continue to poop.   If you stop having any bowel movements you are in trouble because that means your bowels have stopped working properly…I won’t bore you will all the medical details, I will just leave it at that. 

By about 11:00 a.m. (after Paul finally made a poopy) it was decided that we would get to bring him home.   I won’t go in to all the gory details, but it took them until 5:30 to get us released from the hospital.  I was extremely irritated because I was hoping to be home to get the girls from school at 3:30 and then get them ready for the daddy-daughter dance at the school that night.

When we realized by 2:00 that was not going to happen, I called my friend (she probably is starting to dread my name showing up on her phone) to ask if she would get my kids.  I told her that they had to run one more IV of antibiotics because  they were changing his dosing to three times a day instead of two.  Evidently, his numbers from some blood test were showing that he was not in the right range for the antibiotics to be as effective as they should be.  He is on two antibiotics, Vancomycin and Levofloxacin.  He was originally getting one dose a day of Levofloxacin and two doses a day of Vancomycin.  They determined they needed to add in the third dose of Vancomycin.

By the time the antibiotic dose was complete and the nurse finally got around to discharging us, it was 5:30.  I was pretty unhappy because I knew that I needed to be home to get my girls ready for the dance that was starting at 6:30.  They had me ask their grandpa to take them because they really wanted to go.  He was very excited to take them for us.  I must admit, I am glad that he was willing to go with them, but I was very sad that their daddy could not take them.  It makes my heart ache thinking about those things.

When we got home from the hospital, the girls were already at the dance with their grandpa.  Once again, my friend rescued me! 

The girls were excited when they got home and saw their daddy.  By about 9:00 Hailey, told me she had a headache and wanted to head to bed.  I went in to give her some Tylenol…the next thing I knew she puked all over the bed…I quickly had her run to the bathroom in case she had more to spew!  You would think as much vomiting I am around that I would get used to it…nope, I still get the dry heaves…I am pretty good at being a nurse except for when it comes to vomit…I even dry heave while I am trying to rinse Paul’s barf bowls…I always feel bad when I do because I don’t want to make him feel uncomfortable…especially since he vomits several times a day…

Anyway, I grabbed all of Hailey’s bedding and threw them in the washing machine.  She came down stairs and sat on the couch with a bowl in case she needed to barf again.  Sure enough she did and she missed the bowl…now I had more jammies and another blanket to wash.  I just need to say, this was no ordinary vomit…it smelled so bad! 

In the mean time the home health nurse had shown up to make sure we had all the supplies and things we needed.  She was kind and started to help me with Hailey, while I was in the bathroom dry heaving!  I felt so exhausted, I could not believe that I had another sick person to deal with.  Fortunately for us, she was only sick that night.  She didn’t go to school the next day, but she was feeling much better.

I give Paul four IV’s of antibiotics a day, in addition to his TPN.  We start at 6:00 a.m., 10:00 a.m., 2:00 p.m., and 10:00 p.m.  We finish up with the last IV at midnight…head to bed…get up at 6:00 a.m. and start all over again.  Each IV runs for about 2 hours.

Last night was not a good night.  Paul was very sick!  He was also in a tremendous amount of pain.  Needless to say, neither of us got much sleep.  I am hoping for a better night tonight…we are in serious need of sleep.

Due to the pneumonia, we were unable to do chemo this last week.  We have done four rounds and are supposed to do two more before they do a scan.  We will go in this Tuesday for our next appointment and hopefully do chemo. 

We are hoping the chemo is working, but we honestly don’t know.  His bowel blockage is not improving.  However, we are not convinced it was being caused by tumors.  This problem all started right after he had his biopsy.  We saw the scan the week before he had his biopsy and we did not see any tumors where the blockage appears to be.  Our hope is that the tumors are shrinking and that they will be willing to do surgery to fix the bowel blockage…but who knows…it may just be wishful thinking.

Today, the girls and I made cupcakes (we were given a gift basket by a friend that had the items to make cupcakes).  It was fun to just spend time with them and listen to them giggle. I love it when they are happy!  

I have been thinking a lot about the phrase, ”When life hands you lemons, make lemonade.”  What does that really mean?  I visualize the lemons as things like cancer, someone losing their job, death, unexpected tragedies, etc.  But what is the sugar that sweetens the lemonade?  After all, lemonade needs to be sweetened with something or it can be very bitter and not really that delightful to drink.

After thinking about this for a while, I have decided that gratitude is the sugar that sweetens the lemonade.  If you have gratitude, things don’t seem so bitter in life.  If you remember that while you are being squeezed by life’s trials (lemons), you have the ability to be grateful (sugar) and focus on the blessings and tender mercies.  If you add enough sugar to lemonade, it can be very delicious.

The hard part is remembering to be grateful when things look so bleak.  Lately, I have been realizing how many blessings I have been given.

I am grateful for a daughter who saw that I needed help to get the oil changed in the car because I don’t have the time do it.

I am grateful for daughters who are willing to come and spend time with their father at the hospital when I can’t be there. 

I am grateful for friends who run errands for me and bring me the things I need (food, new broom, toiletries, etc.).

 I am grateful for the phone calls and messages I receive from friends and family.

 I am grateful for friends who shovel my sidewalks.

I am grateful for friends who have helped me with my children.

I am grateful for a sister who helped me to get my husbands anniversary present because I didn’t have the time or the knowledge of how and where to get it (a reel for his fly rod and fishing line).

I am grateful for friends who are willing to drive us to Huntsman if needed.

I am grateful for friends who drop whatever they are doing to come bring me dinner at the hospital.

I am grateful for all the gift baskets and goodies we have received.

I am grateful for all the meals that have been brought over.

I am grateful for each and every kind act that has been shown toward my family.  There are too many to mention individually.  We have been so blessed!  Much love and thanks to everyone!

I just have to remember all the things I am grateful for, so I don’t feel bogged down by everything that is happening…After all, I would much rather have sweet lemonade to drink!