Friday, December 28, 2012

We might get a miracle!

Paul’s doctor called today with some good news!  He said that Paul’s biopsy report indicated his metastases is the kind that is responding to a trial drug. He said they are having pretty good success with it in gastric patients.

The trial drug (I don’t know the name yet) is currently approved by the FDA for use in kidney cancer.  Because of that, we have to get approval through our insurance and through Pfizer (the manufacturer) to use the drug.  The doctor said this could take 3 – 4 weeks. 

In the meantime, we meet with our doctor on January 4thto discuss everything.  He told Paul we will probably want to start some kind of chemotherapy before we are able to start using the drug.

I just hope that our insurance company is willing to go along with it…if not we might be doing a fundraiser!  I can’t stress about it…what ever happens will happen…

Paul is doing better.  He has more energy and his bowels are working again.  He is not using as much pain medication.  We are still just doing TPN at the moment.  I am not sure when we will start food intake by mouth.

Thanks again  for all your prayers and support.  We really have been blessed!

We are praying that his health continues to improve and that we get a shot at the trial drug!!!!

Wednesday, December 26, 2012

Home after another hospital stay...

Paul ended up in the hospital last Friday, December 21st.  We took him up to the Acute Care Center at Huntsman first thing in the morning.  His pain started Thursday afternoon and just was not improving.  We figured he probably had a bowel obstruction, since the symptoms were the same as the last time he had a bowel obstruction earlier in December.

We were right about his bowel obstruction…only this time it was worse than last time.  Once again, he was admitted to Huntsman Hospital.  He was given pain meds and IV fluid.  The doctors said they were going to try the conservative approach again…in other words, he would receive pain meds, bowel rest, and fluid IV’s.

By the second day, I started to request TPN (total nutrition through a large central vein).  The doctors were very hesitant because of the potential side effects from TPN (sepsis, liver and kidney problems, potassium issues, etc.).  There is some risk to TPN, but I knew if we did not do something, I was going to lose Paul very soon.  He had not had much nutrition going in to his body for the past couple of weeks and was dropping weight very rapidly.  He was very weak and lethargic. 

The doctor that I was talking to about TPN was a resident.  He was a little bit full of himself.  In fact, he really is the only doctor we have had at Huntsman that I did not particularly care for.  The first day we got in there he told us we should put Paul as a DNR (do not resuscitate) because his kind of cancer is so fatal.  He told us that he didn’t have a good chance at surviving if something were to happen.  Our daughter’s Katie and Sheila were there with me…they were a bit freaked out about his attitude as well.   He was very gloom and doom.  I started calling him Dr. Doom after that (not to his face of course).

Dr. Doom acted as if Paul was a lost cause anyway… I tried to explain to him that I wanted TPN because if Paul were to be eligible for any possible trial drugs or chemotherapy he was too weak and would not be a candidate.  He did agree with me that he was too weak.  He got really snotty with me when we discussed TPN.  He said, “There a lot of risks associated with TPN.”  I said,  “I am aware of that.”  He said in a cocky attitude, “Really, what are they then?”  I proceeded to tell him all the risks.  He just looked at me and said, “Okay, I guess you do know.” 

 The irony in all of this is that Dr. Doom was so concerned with the risks of TPN, yet he kept talking about Paul as is he was a lost cause because of his “kind of cancer”.   I finally said to him, “Look, if Paul is going to die anyway, let’s just give this a shot.  As it is, he can’t have surgery because he would not heal, and he can’t have chemotherapy because he is malnourished.  At least if we get some nutrients in him he might be able to have chemotherapy for palliative care.”   He said he would talk to the attending about this.

On Sunday morning, Dr. Doom came in Paul’s room at about 5:30 a.m.  He did not know that I had spent the night.  I had the curtain pulled on the other side.  I could hear his conversation with Paul.  Guess what?  He said to Paul the exact same things I had been trying to tell him all along.   I got up and walked around the curtain and he looked a little shocked.  He said hello to me.  He said they were going to start TPN that day.

When the attending physician came later in the morning with the team he told us that they would be starting TPN at 6:00 p.m. that day.  By the way, the attending was very nice.  He works directly with our oncologist.  It was kind of funny because we recognized each other when he came in.  He was the doctor I stopped in the hall, last time I was at Huntsman, to go and check on Paul when he was in the bathroom puking.  I was bawling my eyes out at the time, pleading for him to go in the men’s bathroom because I was so worried about Paul.  He checked on him for me and told he was just throwing up and would be okay. 

Anyway, there was a plan put in place on Sunday.  We would put a Fentanyl patch on for pain and have a pain pump still with Dilaudid for “break-through” pain.  The patch is effective for three days and then needs to be changed.   The whole goal was to get him ready to go home on Monday, December 24th.  We really wanted him home for Christmas.  Oh yes, they also put a PICC line in on Sunday as well.  They planned on running the TPN through the PICC line and using his port for his pain meds. 

My biggest frustration while at the hospital this time, was the feeling that they were going to let Paul starve to death.  I mean this literally.  I told them I was not willing to watch him starve to death.  I just kept getting the feeling that they thought he was a lost cause and it would be better to just let him starve.  I told them this.  I felt like the longer we waited to start TPN the more ground we were losing.  He had already been four full days without any food.  He was already weak because he had not had much nutrition for several weeks. 

As I left the hospital Friday night, I felt very overwhelmed and saddened.  The doctors gave us very little hope. As soon as I got home, my daughters went to spend the weekend at their older sisters home.  Our dog wasn't even home because she is being doggy-sat!  I was at home by myself...I looked at pictures of Paul on the wall...I felt so completely alone...I totally lost it...I cried and cried...I finally called my friend...she came over and consoled me.  

It is so hard.  You mourn, get your hopes up, then you mourn again.  It is like being on a constant roller coaster.  You can see the inevitable, yet you still try to have hope.  You don't want the person you love so much to suffer, yet you don't want to let them go either...Paul has said he is not ready to go yet....he still wants to fight...when he is ready to go...I will have to let him...

Seriously, I did not think we would be bringing Paul home from the hospital (ever).  Actually, none of us did. He was in pretty bad shape.   Fortunately, we were able to bring him home on Christmas Eve.  We were supposed to leave at 1:00, but due to errors (sent the wrong pump) we didn’t get out as early as we were supposed to.   We got home about 4:00 p.m.  Paul was still pretty out of it…but it was just nice to have him home!

I hook Paul up to TPN every night and let it run for 12 hours.  He is getting all of his nutrition through his veins.  He still is not eating or drinking.  On a plus side, his bowels are starting to work again!  I never thought I would be so happy to hear him fart!  Yep, I said the “f” word!  It started to happen on Christmas day…we thought it was a great Christmas present!  Those of you who don’t know, it is crucial that you pass gas and have bowel movements.  If your bowels are blocked this does not happen.  So, it is a good sign when there is movement…we get very excited to hear those lovely noises!  Never thought I would say that…

We have a home health nurse coming 2 to 3 times a week to check on Paul (change his port access once a week).  I am glad that I already knew how to administer TPN and flush PICC lines, etc…I learned that one year ago. Our home health nurse was glad that I already knew as much as I did, because it was Christmas Eve and things were a little crazy!  In fact, we brought Paul home from the hospital on December 23rdlast year after his stomach removal.  I am starting to dislike December a little…

Paul started to improve yesterday.  Today has been even better.  He has been up and moving around a bit.  His color is better and he doesn’t look so sickly.  He has actually been talking a lot more and sleeping less.

My brother-in-law and sister-in-law flew in Sunday from Colorado.  They stayed with us until today.  They were a huge help to me!  We will miss them!  I cried as they left…

My heart is full of gratitude to amazing family and friends.  So much kindness and love has been shown toward my family.  I wish I could send out a personal thank you to everyone, but I just do not have the ability to do so.  I don’t even know who many of you are…kind elves and angels that help anonymously. Please know that everything that has been done is so appreciated.  My children were so blessed for Christmas this year.  They told me this has been their best Christmas ever!  What a beautiful thing to hear at such a sad time in our lives…

Love to you all!  By the way, we still don’t know the results of his biopsy…yep, we know it has been ridiculously long!

Wednesday, December 19, 2012

Doctors appointment...or lack thereof!

People are wondering what happened at Paul’s doctor’s appointment yesterday…well, his appointment got canceled because the lab results weren’t in.  We are tentatively scheduled to see the doctor this Friday.  Yes, we know this is really dragging out…maybe it is a good sign that they will find something…we can hope!

We have been waiting to meet with the doctor before we can make any real plans for our trip to Disneyland.  We need to know more about what will happen with chemotherapy and all that “good” stuff.  We feel like our life is in a holding pattern…not what you want to have happen when your time is limited…

Paul and I are quite the pair.  I don’t want to eat because it hurts.  I can only eat very small quantities of low fiber food.  I have problems taking my antibiotics because they get stuck (esophageal issues from reflux—not related to diverticulitis).  Hmmm…this all sounds so familiar…sounds like what Paul deals with every day. 

Honestly, I didn’t need this to teach me compassion.  Especially, since I know how much Paul suffers.  My heart hurts every day as I watch my love struggle.  It is just a little harder to take care of him when I feel like crap!  I am starting to heal.  After having a reaction to the first antibiotic, I hope I will be back to normal soon! 

Thank you to everyone.  We are so appreciative for all that you do!  Here is to hoping for good news on Friday!

Sunday, December 16, 2012

Life is hard at the moment...

This weekend has been less than fun…Paul has been having a very rough time.  He is in a lot of pain and is losing weight…now at 154 lbs…It is extremely hard to watch.  I keep hoping that on Tuesday they will have some kind of bright news for us.  He needs some kind of help…and I feel helpless…

I was having a really hard day on Friday.  I didn’t feel well…I was very tired…worried about Paul…just angry at the world kind of day.  I was even more saddened when I heard about the children in Connecticut…how incredibly heart-breaking…in fact, there really are no words to describe it.  My heart aches for the families of those killed.  I can honestly say, Friday is the heaviest my heart has ever felt…between worrying about my husband and hearing about those children…It has been so hard not to ask, "why"?

When I was walking home from getting the kids at school on Friday, my friend could tell I was having a hard time.  She stopped me and asked me how I was….I am grateful for a dear friend who let me have a melt-down with her.  We cried together about everything….it was therapeutic to let it all out.  I just feel like I have to be strong…it is hard to be strong…I feel like my whole world has been turned upside down…I am losing my husband and there is nothing I can do about it…I am trying to have hope…it is just very hard at the moment…I know I can do this…I just don’t want to…but I have to.

Sophie had strep throat last week and then Paul and I got lovely colds.  I am worried about him because he is coughing pretty hard and has been running a fever.  He says he doesn’t feel like he needs to go to Insta-care…we will see…

I ended up at the ER this morning.  Friday night I started getting pains in my left side.  I recognized those pains.  I have a disease called diverticulosis…when you have a “flare-up” it is diverticulitis…basically it is an infection in your bowels…yep it’s painful.  I did not eat anything all day yesterday and only drank liquids.  I was hoping it would calm down on its own.  I could tell last night that I was probably going to need treatment.  I was going to drive myself to the hospital, but Paul said it was not a good idea.  So, I called my sister at 5:00 this morning and asked her to take me to the hospital, because I knew they would need to do a CT.  Paul is in no condition to take me to the hospital and sit there…besides someone needed to be with the kids.

Thankfully the ER wasn’t busy this morning and they got me right back.  They ran blood work, and a CT.  Yep, I was right…I have diverticulitis.  Fortunately, they are not making me stay in the hospital…last time I was in the hospital for a couple days.   They are having me take antibiotics at home…if they don’t work…then we’ll reassess the situation.  The biggest thing is I have to get it under control, so that I don’t get an abscess, which can lead to peritonitis….now that would be bad…

Life has been a little overwhelming this weekend…I am hoping for brighter days ahead.  Thank you to everyone for your continued love and support!

Wednesday, December 12, 2012

What we did on 12-12-12...

Today was Paul’s retirement party at work.  He has been on short-term disability this year…it has now run out.  Because it has ended, he will now be going into long-term disability and retirement.  It is a good thing that he worked for the same company for 34 years…we will have a retirement package, which includes a continuation of health insurance (although we have to pay $500 more a month for

Paul had a great party!  Many thanks to all the wonderful people he has worked with over the years.  He was blessed to have so many of his friends come and see him.  He was so happy!    It was nice for me to finally get to meet people that I have heard so much about.  Once again, so much kindness and love was shown to us.

Today is also the one-year anniversary of Paul’s gastrectomy (stomach removed).  It is not a day you really celebrate.  But, it is a day that you remember.  I don’t really allow myself to think about it.  For the most part I am living in the present.

Paul’s doctor’s appointment was rescheduled from this Friday  (December 14th) to next Tuesday (December 18th) because his biopsy results are not back yet.   Evidently, they sent them to Oregon and it is taking about 3 weeks to get the results back.

Honestly, you would think I would be anxious to know the results, but I am not.  Once we know the results, any hope I have left for him to recover may be taken from me.  I like the comfort of having hope that there will be a cure.  If they tell us that he is not a candidate for any trial drugs…well, you know…we will still continue to hope…it will just be a little more challenging.  We will just keep praying, and hopefully God’s will is to keep him here.  Obviously, we will know in time what God’s will is…

I just love this man, Paul.  I do not want to lose him.  He is my best friend.  I really, really like him. I tell him all the time how much I like him.  To me, that can be more of a compliment.  You know, you can love someone and not like them very much.  So he knows that not only do I love him, but I like him as well!

Wednesday, December 5, 2012

Update on Paul...

I brought Paul home from the hospital today.  Needless to say, it was nice to get him out of the hospital!  The doctors were amazed at how well he did.  They told us that he was not the “norm”…that many times this turns out to be “catastrophic”…not sure exactly what the doctor meant by that, but I am just thankful he is doing better.

We saw so many different doctors while Paul was in the hospital.  There was one main doctor assigned to us, but we were visited by handfuls…it was kind of weird to have so much attention…I guess that’s what happens when you are at a teaching hospital.  We actually did not see our oncologist until he came up this afternoon before we left.    It was nice to see his face.  For some reason, I felt more reassured as I spoke with him.  He told us we should (hopefully) know the results of the biopsy by December 14th when we go back for Paul’s next appointment.  He told us that this problem he had could have been caused by the biopsy, but it also could be related to the cancer.  Because of that, we may be seeing future problems with the bowels.  We will deal with that if it comes to that…not even going to think about that right now…

Anyway, Paul’s oncologist told us if his cancer is not compatible with the trial drug they are currently offering at Huntsman, he may be able to refer us to MD Anderson in Houston, or somewhere in Detroit.  They also have some trial drugs that may work.  I guess they are both on the cutting edge of cancer research as well.  

If Paul is not eligible for any trial, his oncologist told us he thinks we should reconsider chemotherapy for palliative reasons.  He said all studies show that while the chemotherapy will not cure him, it will make him more comfortable.  After what we experienced this week, Paul is definitely rethinking about having chemotherapy.  Originally, we said no, because we didn’t want to make Paul’s life more miserable.  He told us the chemo they would use this time is not as brutal as the first ones he had.  He said that people seem to tolerate it much better with less side effects.  He also told us the studies are showing people are living 3–6 months longer with this chemotherapy.  We are only considering it because Paul’s type of cancer can be very brutal on the bowels…the chemo will help slow down the growth and limit the pain.

We also asked the doctors about doing TPN.  None of them thought it was wise at this time.  They said the risk of infection, and liver and kidney damage was too high.  So, I guess we will just try to get as much nutrition as possible via mouth.  It gets to be very frustrating, but we will continue doing what we can. 

Last night as I was putting the kids to bed, Hailey had a complete meltdown.  She was crying about how much she missed her dad.  She asked me why he had to get cancer.  She told me she will miss his kisses on her cheek when he dies.  It was very heartbreaking…I had to be strong…I could not cry…I told her that we will be just fine….that daddy will be here for awhile…that we just need to enjoy all the time we have together. 

After I left Hailey’s room, I went to my room and started to sob.  I never dreamed this would be a part of our lives.  It is so hard to comfort your children when your heart is breaking too.  I have to be strong for them. 

When I got home from the hospital on Monday night, I found a letter Hailey had written to Santa.  This is what is said:  “Dear Santa,  My family wants to go to Disneyland for spring break.  My dad wants an R.V.  I want an American girl and Sophie wants a new bike also mom wants my dad to be with us for next Christmas.  I will not forget Zoey she wants a dog bone.  Love, Hailey  P.S. Make it snow!”

I started to cry as I read the part about  me wanting dad to be here for next Christmas.  Who knows maybe I will get my wish!  Anyway, the whole R.V. thing cracks me up…we have talked about getting a trailer for the past few years…Paul told the girls he was going to ask Santa for one this year…big mistake…I keep trying to tell the girls Santa cannot afford that…we told them we would try and rent a motor home to go and see some things that daddy wants to see…Hailey is still convinced that Santa will bring one…

We actually are trying to get to Disneyland a lot sooner than Hailey realizes.  We don’t want to wait until spring break…we will see what we can work out!

I am glad to have my honey home with me.  It was so hard to leave him at the hospital.  But when you have children they need you too.  It is like being pulled in many different directions.  I feel exhausted!  Of course, it doesn’t help that our dog decided to wake me up the last two nights to play at 1:30 in the morning.  I only ended up getting a few hours sleep both nights because of her.  She kept whining to wake me up to pet her.  Then she wanted to play…little demon dog.  I actually do love her, but I was not very happy with her.  I guess I have to remember she knew that something was going on and her schedule was messed up too…It is like having another child in the house!

I may not thank everyone personally for all that they do, but know that I appreciate all the support and love given to my family.   I feel your prayers!

Tuesday, December 4, 2012

In the hospital again!

Paul has not been feeling right since his biopsy.  He was having pain off and on in his abdomen.  Sunday it started to get even worse.  I noticed he was not eating very much (not that he does anyway).  By Monday (yesterday), I knew that he needed medical attention.  He was trying to be strong and tell me he would be fine.  Of course, I didn’t listen and called the oncologist nurse.  She contacted a nurse in the Acute Care Clinic at Huntsman who immediately called me back.    She told me to bring Paul right away.

Paul did not argue with me.  He just got in the car and I drove us to Huntsman.  He was in pain the whole way.  He felt every bump!  He started to dry heave a lot.  I knew that he was getting worse.  By the time we got there he was in severe pain!

Paul got out of the car as quickly as he could and headed for the bathroom.  Mind you, he wasn’t moving super fast because he was walking very hunched over.  As I was waiting for him outside the men’s restroom, I could hear him dry heaving.  I really started to get worried for him and my tears started to flow.  I started to sob right there in the hallway!  Finally a male doctor walked by and I asked him to go in and check on Paul.  This cute elderly couple walked by at the same time and started to hug and console me.  The doctor came out and said he his fine. He is just dry heaving.  Well, that didn’t seem fine to me!  I knew he was in severe pain!

Paul managed to come out a few minutes later.  We went up to the second floor and checked in.  They got him back in a room in about 10 minutes.  The doctor who met with us was very nice.  The nurse accessed his port and attempted to get some pain meds him in.  It took awhile, but they finally got the right dosage and he started to relax.  At that point, I started to relax….it is so incredibly difficult to watch someone you love suffer so much!   I even went into the bathroom and called a friend who recently lost her husband to cancer.  I asked her if she ever had meltdowns while they were at Huntsman.  She said that she did on a regular basis.  It somehow made me feel better knowing that I am not alone in having an emotional breakdown!

I was grateful when our three oldest children arrived at the hospital.  We were able to be strong for each other.  We even managed to laugh together.    It seemed easier to cope with what was going on.

After a CT scan, it was determined that Paul has a small bowel obstruction.  They do not know if it is caused by a tumor or a stricture (they can’t tell).  Anyway, they admitted him to Huntsman Hospital to treat him with IV fluids, pain meds and complete bowel rest.  Evidently, 80% of all obstruction resolve on there own.

I need to interject here that Paul had some good pain meds…he was very “loopy”.  He had us all laughing with some of the comments he was making!  The doctors even found him to be rather amusing…

It was nice to finally get Paul settled in a hospital room.  I was so exhausted!  I felt like I had run a marathon!  It is amazing what stress can do to a body.  I went home last night, got our younger daughters from our friends house and basically crashed!

I arrived at the hospital this morning to find a much improved husband.  He had not had any pain meds since last night.  He said he felt good…the pain was gone.  When the doctors came in they were very surprised to see how well he was doing.  They decided to put him on a clear liquid diet today and then if he does well try him on regular food tomorrow. 

He did quite well today with the clear liquid diet.  I hope tomorrow goes as well!  They are planning on keeping Paul for a couple of days to make sure he can eat before he leaves…I am just praying that it all works out.

The surgical team met with us today and told us that they will not operate on Paul unless it is a “do or die” situation because he is considered very high risk because of his cancer.  They said the complications could be very bad…

I see TPN (form of intravenous feeding-used for patients who cannot or should not get their nutrition through eating) in our near future again.  I just think it is too hard on Paul’s bowels to have to digest the food without a stomach.  He has to eat constantly and therefore he is in constant pain (obviously, the bowel obstruction was worse than his normal pain).

Once again we are being blessed with help from others!  Thank you all for everything you have done and are doing for us.  You are truly our angels!

I am so tired…I am heading to bed!