Devastating News...

On Friday, November 16, 2012, we received devastating news.  We went to Huntsman for his scan.  We knew there was a problem when we met with the doctor and he didn’t discuss the scan first.  Usually he will tell us the results first thing.  Instead he proceeded to ask Paul how he was feeling.  He asked a lot of questions about his gut (tenderness, severe pain, etc.).  Paul told him it is the normal dumping syndrome pain.  Which can be very severe at times.

After we got that out of the way, he discussed the scan with us.  He said, “Unfortunately, I do not have good news for you…you have a couple of tumors growing in your peritoneal cavity. “  What?  We were both in shock!  I thought,  “Did he just say what I think he said?”  I knew that was bad news because I had read a lot about Paul’s type of cancer and the likelihood of it spreading to his peritoneal cavity was extremely high.  I knew if that happened, we didn’t have a fighting chance! 

The oncologist proceeded to tell us that there was no treatment.  He told us that they could not do surgery and that chemotherapy would maybe increase his life by a couple of months.  When we asked him how long Paul has, he hesitated and then told us typically people with this type of cancer will last about 6-8 months.  He told us to remember these are just statistics…Only God knows when it is his time. 

I cannot adequately put into words how I felt at that moment.  I started sobbing…Millions of things ran through my mind…In fact, things started to flood my mind so quickly that I don’t even really remember what my first thought was besides this is really bad news.  Paul was definitely calmer than me.  In fact, I was shocked at how calm he was.  I think even the doctor was surprised.

The next thing I remember, a social worker came in to talk to us.  She was very kind.  I honestly don’t remember much of what she said except that we needed to tell our little girls that night about their daddy.  I didn’t want to tell them.  I didn’t know how to tell them.  Seriously, how do you tell a 9-year-old and a 6-year-old that their daddy’s cancer is back and he is going to die?  I knew that other people had been through this and they had done it.  I just didn’t feel strong enough.  How could they be so strong?  How did they do it?

We also have three adult children from Paul’s first marriage.  Their mom passed away when they were 12, 14, and 16 years old.  How were we going to tell them?  My heart ached for them too.  Yeah, they are adults, but they already lost their mom…I am just the step-mom…they are going to be frightened…now they are losing their dad too.  It all just seems so unfair…

We have grandchildren too.  Our grandchildren won’t get to know their grandpa…He is such an amazing person to know…

As soon as we left the doctors office we went up and checked out a book called Tear Soup from the library at Huntsman.  The social worker highly recommended it and I remembered that a friend who recently lost her husband had told me about it before.   I have not read it yet, but Paul has and said it is very good.  We also brought home a DVD version that we are going to watch with the girls.  I’ll let you know what we think…

While Paul was picking up the book, I started to make some phone calls.  I can honestly say that there was serious mourning going on both ends of the phone call.  My wonderful family and friends were almost crying as hard as me.   It was a prime example of  “mourning with those that mourn”.  The hardest phone calls I had to make were to the older children (Paul asked me to do it—I think he knew how hard it was going to be).

We got home.  Our two youngest daughters were at a friends house.  They let them stay there to give us time to try and prepare for telling them the “news”.   They knew something was going on as soon as they got home because two of their older siblings were sitting on the couch very red-eyed.  Paul told them that his cancer was back.  Hailey, our nine-year-old screamed out and started to bawl.  She said, “Oh no!  That means he is going to die”!  I actually was a little surprised at how quickly she caught on. It was very heart breaking…

Sophie, our six-year-old just sat there for a minute and looked at us.  She didn’t say anything for a minute.  And then she said, “Okay, can I play on the computer now?”  Her reaction surprised me as well.  I thought she would “act” a little more upset.  She is very much a daddy’s girl.  Later that evening Paul asked her if she wanted to wrestle, she just simply said, “Nope, you can’t because you have cancer again. “  It made him feel a little sad.  He said I can still wrestle with you (she is a serious tomboy).  She didn’t really respond.  Later that evening she simply looked at him and said, “So, where’s the funeral going to be?’  I was a little worried about her reaction. 

By Monday morning, Sophie started asking more questions.  She was laying on my bed with me and asked me when Jesus was coming back to earth.  I told her we didn’t know for sure, but that it would happen someday.  Then she asked about Paul.  She wanted to know if he was going to be resurrected after he died.  We spent time talking about that.  Then she asked me if he was still going to be alive for Christmas.  I told her yes.  Then she wanted to know if he’d be here for the next holiday…and so on…then she asked about next Halloween.  I told I didn’t know for sure, but that I sure hoped so. 

Monday afternoon, Paul received a phone call from his oncologist.  He told Paul they wanted to biopsy his tumors to see if they could possibly treat it with chemotherapy.   The day we found out about the return of his cancer, his doctor told us that they would biopsy his original tumor from his stomach to check for some genetic things to see if there was any kind of chemo that might work (yep, they keep the tumor in storage after they remove it).  He said that would take about 3-4 weeks because it was in Ogden.  He didn’t seem overly optimistic that they would find something.

When the doctor called Paul he said he had been reviewing his case and discussing it with the radiologist.  They both felt that it would be beneficial to biopsy his metastasis instead of the original tumor.  Evidently, there are three types of metastasis that can occur.  If Paul has one of the three kinds they can attempt to treat it with chemotherapy.  So what’s that, a 33.3% chance that they might be able to treat it?  Oh how we hope!

Paul will have his biopsy this next Tuesday.  He has opted to have it done with a local rather than to be put under with general anesthesia.  Paul would have to fast to have a general anesthetic…obviously it is best if he can eat.  Every time he has to fast for some medical procedure, he gets behind on eating and then ends up losing more weight.   They will use an ultrasound machine to guide them…if that doesn’t work, they will have to use the CT to guide them.   I think it sounds painful, but I don’t know… Paul feels it is best.   Unless something goes wrong, it will be a day procedure.  I don’t know when we will know the results.

We spent Thanksgiving in St. George with my dad.  We managed to have a nice time as a family.  We want to create as many memories as we can. Because after all, that is what it is all about! 

We have been so blessed.  There have been so many people sharing their love and kindness with us.  We appreciate all the fasting, prayers, letters, food, gift baskets,  phone calls, visits, support, etc.  There are angels among us!  Love you all!

Life is full of surprises...

Where to begin…life is always full of surprises…my dad had a massive heart attack on July 25^th.  My mom called me at 8:00 a.m. to tell me that my dad was in the hospital and they had just confirmed he was having a heart attack.  We weren’t quite sure what to do.  We waited for about an hour until we found out more information and then we knew that we needed to get to St. George immediately because they didn’t know if he was going to live.  They said he was going to be rushed in for open-heart surgery immediately.  I must say that was a very long 5 hour drive.  We didn’t know what to expect when we got there.

By the time we arrived my dad had already been in surgery for 4 hours.  About an hour later the doctor came out and told us my dad had survived the surgery.  We were informed that one side of his heart was 95% blocked and the other side 100%.  They did a five by-pass procedure on him.  The doctor was pleasantly surprised that my dad had survived the surgery.  They typically like to wait 48 to 72 hours before they operate on someone who has had a heart attack…they had to operate immediately because they had placed a Intraaortic Balloon Pump (The pump at your bedside inflates the balloon in your aorta when the heart is relaxed, allowing the heart to receive more oxygen rich blood without working so hard. Then, just before your heart gets ready to pump this oxygenated blood, the pump deflates the balloon. This creates a drop in pressure within your aorta, assisting your heart in pumping the blood more easily throughout your body).  Basically, his heart was not able to function on its own.  

We stayed to be with my mom for a week and then had to head home.  Thank goodness my sister and her husband live there and have been able to help out!

My dad was in ICU for three days and then transferred to intermediate care.  He stayed there for four days and then was transferred to an acute rehabilitation center for two weeks.  All and all he did quite well.  It has been a harder recovery because of his Parkinson’s disease.  He was very happy when he finally got home.  

On August 25^th, my dad had only been home a little over a week, we got a call from my sister.  She said my mom was headed to the hospital in an ambulance because she was unable to breath even though she was using her oxygen, her sats were only in the 50’s.  My sister said they knew there was a problem when they were unable to keep her awake and she was not very coherent. My sister had tried to convince my mom to go to the hospital earlier in the day because she was acting strange and she thought her lips looked a little blue.  In addition her heart was racing.  My mom just dismissed it because she had seen both her pulmonologist and cardiologist earlier in the week.  They told her she was fine except that she was having anxiety and panic attacks.  So my mom told my sister she was not going, she was just probably having another panic attack.  I even tried to talk my mom in to going….but to no avail…I guess I should mention, my mom had pulmonary fibrosis.  She had been on constant oxygen for approximately 20 months. 

Upon arrival at the hospital, they tried to get her oxygen levels to a satisfactory level.  They were giving her 15 L of oxygen which is as high as you can go…that was not working so they put her on a bi-pap machine (forces air in and out of the lungs)…she started to stabilize (sats in the high 80’s to low 90’s).  Her heart was in atrial fibrillation, so they had to give her meds to try and regulate her heart.  The meds did not work, so they had to use the paddles and shock her heart.  They attempted that three times.  At first that did not work, but finally her heart started to slow down and get back into a normal rhythm.  Her heart was struggling due to the lack of oxygen she had been having.  

They determined she had pneumonia and immediately started her on antibiotics.  They put her in the ICU and let the bi-pap machine do its thing.  By Sunday morning, after getting regular updates from my sister all night, my siblings and I were all exhausted.  Of course, none of us were as tired as my sister staying with mom.  I am so grateful she was there with her.  My dad does not have the health to do it…and we all live 4-5 hours away.  

We went to church and then decided we had better head down to St. George.  The doctors told my sister that they did not know if it was necessary for us to come yet, but I felt like it was something that we should do.  I knew it could go either way, but quite honestly I felt like she would probably pull through, because after-all, my dad had survived his major ordeal.

We got to the hospital that evening and spent a couple hours with my mom.  It was hard to watch her struggling to breathe, even with the bi-pap machine.  The problem with the bi-pap machine was that it was very noisy and my mom could not talk to us with it on.  She would try, but it was very difficult to understand her.  We would try and read her lips the best we could.  Finally, I asked Paul to see if we could get some paper and pen so maybe my mom could write to us.  My mom could write a little...she was very shaky.  At least we could figure out more about what she was trying to say.   

The next morning, I got to the hospital first.  My sister had left to go home during the shift change to get some sleep.  I knew immediately that there was a problem, my mom’s heart was back in atrial fibrillation.  Her heart rate was 150, 160, 134, etc… I asked the nurse about the x-ray they had taken earlier in the morning.  She said that her lungs were a lot worse.  At this point, a doctor and a social worker came over.  I think they were just waiting for someone to get there.  They showed me her x-rays and CT scans.  It was very obvious that her lungs were completely filled with fluid.  I knew what they were going to tell me…

I started to cry and asked if there was any chance she would survive.  The doctor said they would have to intubate and that she would never come off the lung machine.  I knew at that moment I was going to lose my mom.  I felt devastated.  I started to sob. Then I knew I had phone calls to make.  I called my family and told them to get to the hospital as soon as possible.  One of my sisters and my brother still had to come from up north.  We knew that we would not all be together for at least 5 to 6 hours.  

The doctors told us they would keep her going as long as they could so family could get there to say their goodbyes.  By 5:30 p.m. we were all there.  They asked my mom if she was ready for the bi-pap machine to be removed.  She shook her head yes.  They had given her morphine and started a constant morphine drip so that she would not struggle to breathe.  They put her on a cannula with 6 L of oxygen to try and help a little… we all stayed with my mom until she passed away at 8:10 p.m..  It was a very sad yet spiritual experience.

I am relieved that my moms funeral is over.  It has been a very emotional time.  I made a dvd of her life.  It brought back many memories...many tears...  My sister actually kept the papers she had been writing on in the hospital.  While we were on our way to pick out my mom's casket she pulled it out of her purse.  I saw the message, "take care of Jim"...I totally lost it...I cried and cried.  

 While my mom was still on her bi-pap machine, a couple hours before dying, she was insistent we take it off so she could say something to us.  She said, “Remember I will speak to you through the Holy Ghost”.  We had to put her bi-pap machine back on because her sats started to drop rapidly.  That was very profound to me.  I knew that the veil was thin…she was getting closer to death and she knew it.

 

Just so you know, I took the opportunity to ask my mom while she was still coherent, that when she got to heaven if she would please talk to Heavenly Father and ask him to allow me to keep my husband here longer…that his cancer won’t return.  She nodded yes, and mouthed to me that would be the first thing she did… I felt selfish for asking.  Why should I be allowed to keep my husband when others have lost theirs?  I think of Holly (talked a bit about her in my last post) and how she recently lost her husband Trent to cancer.   Her heart is breaking.  She is so incredibly sad. Why does it have to be so darn painful?  

The truth of it is, I don’t want to feel that kind of sadness.  I experienced it to a degree when Paul almost died two years ago.  When they came out and told me he was bleeding to death on the operating table and didn’t think he was going to make it, my heart started to break.  I started to wonder how I was going to take care of my children by myself?  How was I going to live without my best friend?  How could I possibly go on without him?  I missed him. The pain was very intense.  For a brief moment, I experienced what it feels like to lose a spouse…I could feel his spirit around me.  I literally told him to go and get back in his body.  Obviously, he did.   He survived, but to this day I still remember the intense sadness at the thought of him being dead.

While my heart is sad and aching for my mom, my dad is suffering a much greater sorrow.  He has lost his best friend and soul mate.  Yes, he has us children, but it just isn’t quite the same. Sadly, my dad blamed himself for her death, because they figure she got the pneumonia from being at the hospital with him.  My sister even blamed herself...wondering if she had got my mom in to the hospital sooner.  It was no ones fault.  It was God's will.  God has a plan.  

My mom said a little while before she died to remember that families are eternal. I am so grateful that we know families are eternal.  But, even knowing that cannot eliminate missing loved ones who have passed on. It is a part of the mortal experience. 

My mom’s statement about speaking to us through the Holy Ghost really got me thinking.  In 2Nephi 32:3 it states that angels speak through the Holy Ghost.  It confirms to me what my mom had said.  My mom is watching out for us on the other side.  I feel that my mom is going to be able to help us more now than she could while she was alive. My mom was such an amazing person, I think she qualified as an angel on earth.

I had a friend attend a class about angels at education week at BYU this year.  She had talked about things she had learned.  I had another friend share this article with me from the class at education week. http://www.ldschurchnews.com/articles/62679/2012-BYU-Campus-Education-Week-Angels-co-workers-with-mortals-in-the-work-of-the-Lord.html  I feel like my mom is on the other side working hard to help me and my family… I love this statement from the article… Describing them as "co-workers with mortals" in the work of the Lord, Brother Parry said, "Their goals and objectives are the same as ours: to bring people to Christ, help people repent, save people, love people, minister to people and administer to people."

How beautiful to think that we are co-workers with angels.  We all want the same thing.  We want to be back in God’s presence and to be together again.  I just know I must do what it takes to make that happen someday!  I also know it is important to live each day and treasure the time here on earth with all our loved ones.  Make each day count! 

Paul is probably going to need his esophagus stretched again....things aren't going down as well.  This will make stretch number seven this year.  He still is exhausted a lot and has dumping syndrome problems.  We are just glad to have each moment we have together!!!

We know what its not...

As I mentioned in the last post, Paul has been suffering from lower back pain, into his hip and groin.  So, we have been working for the last three months to figure out what is causing it.

First, Paul had MRI’s of his back and both hips.  The back only showed some scar tissue forming around the area he had his spinal fusion.  The hips look pretty good except for some arthritis….so the good news no  avascular necrosis was seen.  The bad news still now answers.  So the next step was to go to a urologist.

After meeting with a urologist a couple of weeks ago, they thought Paul might have a kidney stone lodged in there somewhere.  They wanted to do an intravenous pyelogram (IVP) which is a special x-ray examination of the kidneys, bladder, and ureters (the tubes that carry urine from the kidneys to the bladder) to see if they could find anything.  The problem is you have to do a bowel prep before they do the IVP.  Since Paul has no stomach and already has problems with his bowels they weren’t sure it was a good thing for him to do.  They said they had never had a patient without a stomach before, so they called up Paul’s gastroenterologist to get an opinion.  They decided it was best not to do the bowel prep if it wasn’t really necessary because if they did find something, they would have to do a cystoscopy anyway.  A cystoscopy is a diagnostic procedure that uses a cystoscope, which is an endoscope especially designed for urological use to examine the bladder, lower urinary tract, and prostate gland. It can also be used to collect urine samples, perform biopsies, and remove small stones.

Paul had his cystoscopy yesterday.  The doctor said he did not find anything unusual…no kidney stones or strictures.  He was stumped.  As was I.  My first thought was Paul is going to be glad there is no apparent  problems with his kidney and other organs, but he is going to be discouraged because we still don’t know what is wrong.  I was right.  Paul was happy, but actually depressed at the same time.  

Paul felt pretty miserable after the procedure.  Let’s just say he was glad he was under anesthesia for the procedure because it is like getting catheterized only worse…  It was VERY uncomfortable to have to pee afterwards and still is today.  He puked several times yesterday and just felt really miserable.  His back was absolutely killing him yesterday…  By late last night his back had finally calmed down.

Amazingly, today Paul’s back feels the best it has felt in three months.  We don’t know if they dislodged something when they were in there and just didn’t see it or what.  We are just hoping this a permanent thing!  We don’t want to jinx it!

My heart has been full of sadness the last couple of days.  I have been following a blog about a guy named Trent who had Pleomorphic Spindle Cell Sarcoma.  His wife Holly, had been keeping this amazing blog  http://lookingupandkneelingdown.blogspot.com/.  I was very touched by her strength, honesty and spirituality.  I would talk to Paul about what was happening in their lives.  I could relate to so much of what she said.  I felt like she was my friend and I didn’t even know her.  I prayed for them.  I wanted Trent to live! 

Unfortunately (or fortunately for him because he had been through so much), Trent passed away early yesterday morning.  Strangely, the way I found out was not by their blog, but on facebook.  One of my dear friends (also a mission companion) had posted it on her wall.  I was schocked! I didn’t know that Cindy new Holly and Trent.  Evidently, they had become good friends in Nebraska.  Anyway, I called Cindy and cried and cried with her.  I told her that I have been wanting to meet Holly. Cindy told me what an amazing person she is.  I guess that now I will actually get to meet Holly.  I just wish it was under better circumstances.  I know that Holly’s heart is absolutely breaking right now!  Not to mention that there are five beautiful children that are going to be missing their daddy…sometimes life just doesn’t seem fair…

Paul will be officially retiring on disability in December.  His short term disability runs out in December and then we will be on retirement/LTD.  His health is not good enough to go back to work.  All the doctors have told us that he will always battle fatigue, dumping syndrome, and numerous other problems because of the lack of his stomach.  Obviously, retiring when you have a nine-year-old and six-year-old isn’t the ideal, but you do what you have to do.  We met with our financial planner today, if all goes as planned (won’t know for sure for a few months), I will not have to go back to work.  That in itself is a huge blessing!!!

I pray daily that Paul’s cancer will not return.  I pray daily that I will be strong enough to handle what comes our way.  I pray daily that Heavenly Father will forgive me for not always being as grateful as I should be. I do know that it is so important to be grateful for even the small things, but sometimes you just feel a little like having a pity party.  We really have been blessed throughout this whole ordeal.  God has given us amazing family and friends who constantly are supporting us and lifting us up.  

I think this post has gone on long enough…

Update...

Happy Birthday to Paul! What a blessing it is to have him here with us…well, he isn’t actually here with us right now…he is up having an MRI of his hip.  Yep, he is having hip problems…

Paul met with an orthopedic surgeon this week to discuss his hip.  The doctor is concerned that Paul has a condition called avascular necrosis.  Basically, it is bone death caused by poor blood supply to the area.  Most common places this occurs is in the hip and shoulder.  The doctor informed him that the chemotherapy he received along with the steroids can cause this problem.  It is amazing how many possible side effects can occur from treatment. 

Of course, it doesn’t help that when Paul was 15 years old, he grew 6 inches in 6 weeks!!!  Yep, you read that correctly.  Because of his amazing growth spurt, he experienced a slipped epiphysis (separation of the ball of the hip joint from the thigh bone (femur) at the upper growing end (growth plate) of the bone).  After he had his surgery his doctor informed him he would probably require an “early” hip replacement.   Another side effect of this happening can be avascular necrosis. 

Needless to say, we might be seeing another surgery in Paul’s near future.  We will deal with whatever it is when we find out more.

Life without out a stomach is very challenging.  Paul has problems daily.  Either the food doesn’t want to go down or he experiences dumping syndrome.  When he has dumping syndrome it is VERY painful.  He usually has to take a Lorazepam to calm things down, but when he does he is completely wiped out and has to lay down to sleep for awhile.  Actually, naps have become an important part of Paul’s everyday life.  He is exhausted a lot!  The doctors have informed us this is most likely his “new” life. 

Paul is maintaining his weight around 169 – 172 lbs.  He is quite thin for his height.  Realistically, he will always be thin.  We just hope to keep him where he is at right now.

I will update again when we know more.

CAT scan results

Paul’s CAT scan was on June 7^th.   He was scheduled to see his oncologist on June 12^th.  We were not too excited to wait through the weekend to find out the results.  Fortunately, or unfortunately, depending on the way you look at it…Paul had to go in to Huntsman on Friday, June 8^thbecause he has been having pain in his kidney area.   The pain also shoots down into his groin area…  There was concern of kidney problems  (one of his chemo drugs can cause kidney damage).   While Paul was being checked out by his doctor, he informed Paul that the CAT scan looked clean!  That was great news!  No evidence of cancer at the moment!  His doctor also said his blood work looked great, so they did not think it was kidney problems.  They scheduled Paul for an MRI on June 11^thbecause his doctor is thinking it is some back /spinal problems…

So, Paul had an MRI last Monday, that night his oncologist called and asked to speak with Paul.  My heart about flew out of my chest.  Every time you get a call from a doctor, especially the same day as you have had a test, you feel instant panic!   He called to tell Paul that the MRI showed some thickening around one of his nerves, but that they weren’t sure what was going on.  He said they were going to get his MRI from last year and compare the two.  Once they have compared the two scans, hopefully they will have more answers.  So, we meet with the doctor on June 22^nd to find out more information.   We are hoping that all he needs is some physical therapy.  Neither one of us want to deal with another surgery…

For those of you who don’t know, Paul has had three major surgeries in the last two years.  The first attempt to fix his back was a surgery that almost killed him…a ruptured iliac vein…he bled out on the table and had to have 15 units of blood, then 2 months later he had his spinal fusion, and then a year later he had his stomach removed. 

Paul has already had his esophagus stretched 5 times this year and is going to have it done again on June 26^th.  Poor guy is starting to “gack” more again.   He informed me yesterday that he is back to 169 pounds.  We were keeping him around 172 for quite awhile.   Yep, he is skinny at 6’ 3”.  

Paul’s hair is coming in a nice dark gray with some light gray.  At first it was all very light gray…We will see if it changes back to his brown color, but it’s not too likely.  He was really hoping it would come back in black and curly!  He wanted some chemo curls!  Somehow I just can’t picture him with black, curly hair… the thought of it makes me smile!

In the past two months, two more people in our family were diagnosed with cancer.  First, our daughter’s mother-in-law was diagnosed with pancreatic cancer.  She is currently undergoing chemotherapy in hopes to shrink her tumors enough to operate.  She is fighting with all she has to beat this nasty cancer! Second, Paul’s sister was diagnosed with a rare uterine cancer called Leiomyosarcoma.  Only about 1000 people in the U.S. are diagnosed with this type of cancer in a year.  She will start her chemotherapy tomorrow.  She is amazing like Paul.  I have no doubt she will kick the cancer to the curb! 

Cancer is mean and evil.  Paul and I know that we will be on pins and needles the next scan he has in four months.  Last week we found out one of our friends cancer has returned.  He had his scan the same week as Paul.  It was very heart-breaking news to us…and of course, to them.   We seriously thought he had beat his lymphoma.  He will start chemo again tomorrow and then have a stem cell transplant in a couple of months.   Our prayers and thoughts go out to them as well. 

This past year has been such a learning experience for our family.   One of many things I have learned about is the power of prayer.   Prayer works.  At times in the past, I used to wonder why we needed to pray.  Seriously, why pray?   Why didn’t God just fix things, he “knows” what I want?    When we were born on this earth, we were given a thing called agency…the right to choose for ourselves.   I have come to realize it would be contradictory for God to do things without our asking.   We must ask and it is through prayer that we ask for help.  I have also realized that what I think is best may not really be what is best.  Only God knows what is best for us…even if we think we know best.  Often times, God answers our prayers through others. We have been helped through some very tough times.  Our problems did not necessarily vanish, but we were helped.  We literally could feel the prayers of others. We have received such kindness and loving acts of service.

There have been times lately, I have thought a lot about the statement that we will not be given more than we can handle.  For those of you who have watched the movie, “The Christmas Story” (Red-rider BB Gun), I have felt like shouting  “uncle, uncle, uncle” numerous times.  What that means is, I have felt like I have been pushed to my limit.  But I guess God disagrees…I am finding I am stronger than I thought.  At the end of each day, I feel happy that I made it through… Trust me there are days I am not sure that I am strong enough to handle everything…

Life is about one day at a time.  Each day we need to find something we are grateful for.  I made a gratitude board for my family.  The theory is we will all write something we are grateful for everyday and post it on the board.  The reality is I see the board every day and it reminds me to think about something I am grateful for.  Some days you might just be grateful for toothpaste or toilet paper, but I can guarantee you will always be able to find things you are grateful for!  Just for the record, it is still my goal to get us all to write something and post it everyday!!!

Our gratitude board...this was taken before I put it out to use...

On June 4-6th,  Paul had the opportunity to go on a cancer retreat sponsored by http://reelrecovery.org/ What an amazing experience for him!  I will let him write a post telling about it.  I just want to thank all the "angels" who made this possible!

Today I feel so blessed and am grateful for a wonderful husband.  He is an amazing father and friend.  I love you Paul! 

Happy, Happy, Happy!!!!

Paul finished his chemotherapy on Tuesday, April 3rd!  We go to his oncologist next week for blood work and a check-up.  The plan, as of now, is to get another CT scan in June and see if anything is  growing...we are hoping that this nasty cancer is gone!

Paul is having some lingering side effects this time from the chemo.  In addition to the "normal" fatigue and feeling like crap, he has an annoying ringing in his ears and a slight hearing loss.  This is a side effect from the Cisplatin.  He will have his hearing checked next week...they are hoping the damage is not permanent...  His kidneys seemed to be a little unhappy this go around as well (also side effect of Cisplatin).  We will see what the blood results show next week.

Here are pictures of Paul having his chemotherapy removed.  He will probably be leaving his port in for an additional three months...until the next scan...

The nurse flushing out port...

Taking apart the tubing...

You can see the look of pleasure knowing it is coming out!

The needle still in the port...

Removing the needle...

Checking out the port...

One happy man!!!

Close-up of port...

Chemotherapy #3 started yesterday...

Let me just say, round two of chemotherapy was no fun!  Paul was so tired he could hardly move... In addition, he had more nausea and no desire to eat.  We called the doctor the second week of chemo and asked for Marinol.   Marinol is a synthetic (man-made) pill form of marijuana (the THC portion) that is approved by the FDA.  I definitely have my opinions about legalizing medical marijuana instead of using Marinol.  Yes, I am for it.   It is legal to use marijuana in 16 states for medicinal purposes.  This is a topic that I never thought about until my husband had cancer. Now, I think about a lot of things I never thought about before...

Fortunately, the Marinol has helped.  Paul actually gets the munchies!  I have learned it is not a good idea to send him to the store...last night he came home with two bags of potato chips, three boxes of Creamies, and some other little goodies.  Yes, he needs the calories, but I sure don't!  We have had more potato chips in our house the last couple of weeks then we have had our whole married life! Unfortunately, with no stomach it is hard to get much in him at a time...his esophageal problems do not help either.  At least he has the desire to eat...

Paul had his esophagus stretched again last Friday.  The doctor said it had shrunk back down from 13.5 mm to 8.5 mm (he was 7.5mm the first time it was stretched).  The goal is to get his esophagus stretched to at least 18mm.  The doctor managed to get his esophagus to 15mm this time.  He told us to plan on at least two or three more visits to get his esophagus stretched where it needs to be.   We are hoping that it will start to stay stretched...According to the doctor, this is common and eventually it will stay...we sure hope so!

The good news is that this is the last round of chemo!  Paul will be finished on April 3rd! They gave him a fleece blanket and sang to him at Huntsman yesterday because he will be "graduating" from chemo! He will see his oncologist on April 10th and then they will schedule Paul to have a scan in three months.

After we see his oncologist in April, we will start working on getting his esophageal issues worked out.  Paul is very thin and needs to gain some weight.  He is hoping to be back to work by the middle of May!

Chemo round #2 is kickin Paul in the bootie...

This is Paul's second week of chemo round two.  I must say, this has been a lot harder than round one.  Poor guy has been so completely exhausted...some days he hardly gets off the bed...but he still manages to get at least one walk in a day (sometimes two) and then he lays down and takes a nap when he gets home. 

Paul has had more nausea this time.  He has not thrown up from it, but it has not been much fun.  He was just starting to gain weight when he started chemo again.  He started to put on weight right after he got his esophagus stretched....but now he is losing again...he hasn't gacked much, but he has no appetite.  He is now down to 168 lbs.  He said everything has a metallic taste to it.  I feel like a nag because I am constantly asking him if he has eaten.

Recently, Paul's friends from work gave him a care package with hats, books, and dvd's.  We had a great time looking at all the different hats!  It was just what he or should I say we needed!

Paul is such a thoughtful person.  He decided to make cookies the day before we went to Huntsman so he could share with the nurses and other patients.  He makes very yummy cookies! Paul took one of the hats and wore it while he was getting his chemo at Huntsman....He made the people smile as he walked around sharing his cookies...Here's why...

This is one of the hats his friends sent...Yep, you are seeing it correctly...it has a crocheted mustache and beard attached to it (they are buttoned to it so you can remove)! I think he totally looks like a lumberjack!

Paul will end this round of chemo of March 12th and then he will have one week off.  His third round of chemo is scheduled to be on March 20th.  We are hoping he only has to do three rounds....I guess we will see...

It's the small things...

Paul ate a half of a pancake for breakfast this morning!  To many, this may seem like nothing.  To us, this is a miracle.  He has not been able to eat any "real" food for quite awhile now.  He only had to stop eating this morning because he was full...not because he was "gacking".  This gives us hope!  Hope that was starting to diminish the harder it became to eat.

Without a stomach, Paul will never be able to eat a lot at one time, but if he can actually eat food, he can eat a lot of small meals in a day.  He will always need to have high calorie smoothies to increase his caloric intake, but just the fact that he might be able to eat again makes us both really happy!

Had endoscopy today...

Fortunately, Paul's blood work looked good yesterday so they were able to do his endoscopy today.  The doctor discovered a stricture where his esophagus and small intestines were attached.  They were able to dilate his esophagus which should help him be able to eat better.  He will have to have this procedure done again in a few weeks because they weren't able to dilate it as large as it needs to be  (they didn't want to tear anything).  They wanted to do this procedure again in 2 weeks, but because of chemo, we will have to wait a little longer.  Paul starts chemo again on Feb. 27th.

The doctor was shocked that Paul had been able to get any type of food through his esophagus because the stricture had created an extremely tiny opening... He said that the reason he was "gacking" most things back up was because the esophagus was too small to allow anything to pass.  I guess that explains why Paul even started to "gack" on smoothies...things were just dripping through slowly.  The doctor also said the reason Paul was having so many problems with golf-size spit balls forming was because the body was producing more saliva to help with this problem (food not getting through).  But, it actually was causing more problems because there was nowhere for the spit to go...so it was just sitting there forming big blobs!

Ironically, the doctor told us what everyone has been saying...Paul needs to gain weight. He told us to try and get 4000 calories a day...Yeah, right!  We have been lucky to get 1300 to 1500 calories a day the last couple of weeks.   I would be happy if we could 2500 calories a day... He now weighs 169 lbs.  At 6' 3" that is a tad bit underweight!  He is looking very thin.  We are hoping that it will be a bit easier now to get food in him.  I have also figured out another way to get more calories in his smoothies, so hopefully that will help!

The doctor also told us there were no signs of cancer in his esophagus.  They did biopsies just to make sure, but it looked good from what they could tell. The doctor that did his endoscopy today is the same doctor who discovered his cancer.  He told Paul, that God had definitely had a hand in them finding Paul's cancer when they did.  Often times, Paul's type of cancer is not discovered through endoscopy and rarely is it discovered before it has metastasized.  We do feel very blessed that it was discovered before it had progressed further.  At this point there are no signs of cancer, but they need to do the chemotherapy because this type of cancer has a very high recurrence rate. 

We are feeling optimistic that today's procedure will help Paul!  I guess time will tell...

Hair today...gone tomorrow...

Paul's hair in the shower...

This is only some of the hair... quite a bit had already gone down the drain!

Paul's hair decided to start falling out yesterday.   It was minimal yesterday, compared to today.  These pictures were taken this morning.  I must say it was a bit freaky for both of us watching his hair come out.  It reminded me of when we shower our dog and all her fur is coming out...you know how dogs shed...

 It is not so fun finding hair everywhere.  Paul said it was especially nasty when it was going in to his mouth while he was showering!  Anyway, I guess it is time to pull out the clippers and shave his head!

Before...

Had to have some fun...never had a mohawk before!

Hair is buzzed off...

Now Paul's head is bicked!

 He is still so handsome! I love my man!  Now he is off to find some new sportin' beanies!

Chemo round #1 complete!

After being hooked to an IV bag for 2 weeks, Paul completed the bag of chemo last night.  He will go in on Feb. 21st and have his blood checked.  If his blood is at acceptable levels, he will have his endoscopy on Feb. 22nd.  If all goes as planned, his second round of chemo is scheduled to start on Feb. 27th. 

I really hope that they are able to do his endoscopy.  He is struggling to get food down, even liquids.  He is still losing weight... TPN is just around the corner if his weight loss does not stop.  It is not like he isn't trying to eat...his darn esophagus is just one big spasm!!!!

I am so grateful that I have my Valentine here with me to celebrate today!  We have been through a lot this past two years with his health.  I treasure everyday I have with him....and hope to have many more Valentine Days to share!

Chemo brain...

So, last week we listed our king (solid pine canopy) bed on KSL.  We were asking $475 which was a good deal because it included the mattress set (in great shape).  Anyway, a guy comes to buy it and asks if we are set on the price.  Paul asked him if he had cash.  He said yes.  Paul said, "Okay, how about $350?"  My mouth dropped open.  When he looked at me, he knew that he had said something wrong.  The guy even looked at him funny and said sure!  Then it hit Paul, he said, "Weren't we asking $375?"  Both the guy and I told him that we had listed it for $475. Ironically, Paul is the one that told me to list it for that price.  Paul asked the guy if he knew what chemo brain was.  They guy just shook his head no.  In fact, he didn't even care to know what chemo brain is. 

In all honesty, I was a little bugged that the guy didn't show more compassion.  Especially since we told him we were using the money from the bed to pay for medical bills.  He was just pleased that he had gotten a GREAT deal!  I guess I could have said, sorry we can't sell it for that...but, Paul was so embarrassed and he felt really bad.  I told Paul it was okay... I wasn't mad...Who knows, maybe the guy had a greater need than us.  Needless to say, I still love my Paul!  I just need to make sure I handle all the "important" things!

On Monday, the Home Health nurse came out to change Paul's needle and chemo bag. What a fiasco!  Paul called and talked to the pharmacist that morning to make sure everything was set up.  The pharmacist told him he had Paul's order there and was going to get it completed that morning.  He gave Paul the number to call the nurses to make sure we were on their rotation.  He called and had to leave a voicemail.  They called us back and told me that they would be out around 6:30.

We got a call from the nurse about 4:30 letting us know she was planning on coming.  Paul asked her about the chemo drug because it had not arrived yet.  She explained that someone had let the ball drop and it wasn't ready.  The story about the delay had something to do with the pharmacist not having the information he needed to fill the prescription.  He sure seemed to know all about it when Paul talked to him that morning.  Anyway, she told them they needed to expedite it, because they weren't planning on sending it until their 6:30 p.m. run.  She told them Paul's chemo was going to run out at 6:30 and they needed to get here by then...They told her they would get it here by then. 

Well, needless to say, she got here at 6:15 and there was no drug.  She called them and they told her they had sent it out at 6:30.  So, we waited...the girl arrived at about 7:15.  She brings in the box...only it wasn't Paul's chemo drugs.  She goes back out to her car and discovers that she did not bring his box of chemo with her.  She had grabbed the wrong box to bring.  They placed another phone call.  They said they would get it out as soon as possible...

In the meantime, our nurse had disconnected Paul from his chemo bag and had replaced his needle in the port.  She tried to get the IV bag disconnected from the pump, but it was stuck!  Paul needs a pump to infuse his drugs, so she called and asked for them to send us a new pump.  They told her it would take a couple of hours. WHAT?  She decided to mess with the other pump while we were waiting.  She took a screwdriver and successfully knocked the tubing (cassette) out without causing damage to the pump. 

Now we were waiting for the chemo drug and a new pump.  Amazingly, we got the chemo and new pump at about 8:15.  The nurse hooked him up to the new bag of chemo, inserted it into the bag (looks like a fanny pack) and started the pump.  Within a few minutes the pump started beeping.  She kept messing with it. It said that there was a problem with the tubing.  After examining it, she thought the problem was because of a kink.  So she fixed the kink and restarted the pump.  Within a couple of minutes the beeping started again.  She looked at it again and it had the same message.  She tried the same approach again and the pump started working again.  Then after a couple of minutes the beeping started again...

After looking at the IV bag, we figured that it must be because the attachment on the chemo bag was too large for this kind of holding bag (fanny pack).  It appeared to get kinked in the bag.  The previous IV bag had a lot smaller attachment and a shorter length of tubing.  So, the nurse took some scissors and cut the IV bag and pump out of the holding bag.  She had to cut it out because we couldn't get it out any other way without totally disconnecting Paul from the IV.  So, Paul had to say good-bye to his nice small bag to carry around his IV bag.

We placed the IV bag and pump in a big back pack that we had used for Paul when he was getting his TPN.  Ironically, within a few minutes the pump started to beep!  The nurse was very frustrated at this point, so she took the IV bag out of this pump and put it back in the old pump.  It worked just fine in the old pump.  The only problem is that you have to use a screwdriver to get the bag out of the pump.  We will worry about that next Monday. 

Anyway, by the time we were done it was 9:00.  The nurse had been at our house for two and a half hours just to change out a chemo bag! 

Paul is struggling to keep on weight.  Most foods get stuck in his throat.  We talked to his oncologist and gastroenterologist on Tuesday about the situation.  The game plan now is to bump his next chemo round back by a week and attempt to get his esophagus scoped (and dilated if needed).  He will have his blood tested on Feb. 21st.  If his blood looks acceptable, they will do the endoscopy on Feb. 22nd.  He will start his second round of chemo on Feb. 27th. 

Paul will finish his first round of chemotherapy on Feb. 13th.  He is still on chemo 24/7.  It will be nice to have a two week break without any chemo (normally it will only be a week).

Paul is very tired!  He got his B12 shot yesterday so maybe that will help a little...  He gets some nausea, but for the most part can keep it under control with his meds.  We put some peppermint oil on his wrist for him to smell and it really helps with the nausea!

Paul is still walking daily and trying to remain positive.  We know that things could always be worse!

This is NOT a picture of Paul's bags for carrying his IV, but his look similar.  I think his larger bag is actually a little bigger than the one shown here.  He enjoyed carrying the smaller one.  The plan is to make sure he gets a new small one again with the next round of chemo.

This is the kind of pump Paul uses on his IV bag.

The honeymoon is over...

Chemotherapy is starting to change our lives.  The night that I wrote my last post, Paul had a very bad night.  The chemo is wreaking havoc on his GI tract.  No, he is not puking,  let's just say that his intestines are not very happy at the moment. I finally had to call the on-call oncologist last night to get permission to give him some additional meds to stop his bowels.  The doctor told me it is imperative to get things under control, so that he doesn't get dehydrated (didn't tell me anything I didn't already know).  Evidently, this can be a big problem with chemotherapy.

Paul's esophagus is NOT happy either.  He is not able to eat very many things without them getting stuck...thus, he has a whole lot of "gacking" going on.  In addition, nothing really tastes very good either. I bought him a banana cream pie from Marie Calendars yesterday.  He was able to eat some (without "gacking") and said it tasted really good.

Fortunately, Paul can still get liquids in, but he is so sick of liquids (including shakes and smoothies)!  He is losing weight rapidly at the moment.  Unfortunately, he is going to have to eat more smoothies...that is the only way I can see to keep his weight more stable.  Even at that, he said it is getting harder not to "gack" on smoothies.  The frustration is starting to set in.  He so desperately wants to eat "real" food, but I think he would be happy if he could get his smoothies down smoothly (no pun intended).  I guess we'll be trying some more pie today!

Life is about opposition.  You have to experience the bad to understand and appreciate the good.  That is the journey we are on now.  We have good days, but we also have the bad.  I would love to say that we always feel strong, optimistic, and full of gratitude, but that is not always the case.  Sometimes, I just want to scream and yell stop!  Obviously, Paul feels this...I am sure a lot more so than I do.  He is the one suffering...  It is through suffering that we learn the most...

We are going to be calling the doctor on Monday to see if we can get him in to have his esophagus dilated.  His surgeon said that he has had enough time to heal, but we don't know what they will do while he is on chemotherapy.  We need to do something or he will most likely be going back on TPN.

Just a quick update on Paul...

We are now on day four after the initial chemotherapy...Paul still has one chemotherapy drug (5-FU) running 24/7.  So far, he is tolerating it pretty well.  He is not nauseated or vomiting.  Mind you, they have him on some anti-nausea meds.  He has a few mild symptoms (dizziness, red face), but mostly he is just VERY tired. 

Paul is out for one of his daily walks right now.  He enjoys getting out and walking the dog.  He is so amazing!  I love him more than words can say!

Long day at Huntsman...

Paul awaiting his first round of chemo...

First the nurse cleaned his port...

The port before the needle is inserted...

The needle is now inserted into the port...

The nurse covers the port with protective tape and writes the date on it...

Paul is now ready to be attached to his chemo...

Paul making his nurse laugh while she is giving him his Epirubicin...what a lovely red color it is...it kind of looks like kool-aid...it even makes your pee red!

One of the nurses moms makes these hats...she was measuring Paul's head to see what would fit...doesn't he just look beautiful in this hat! They didn't have any manly hats...her mom is going to make him one... I really think the flower gives him character!  I was kinda hoping he wanted to keep this one!

We were at Huntsman for 8 hours today!  Paul managed to survive his first day of chemo.  We have been given 3 different drugs to use for nausea.  We are hoping to keep him hydrated and happy!

He received his doses of Cisplatin and Epirubicin and is now attached to a pump that will continue giving him chemotherapy (5-FU) for two weeks.  We have a Home Health nurse coming next week to change the needle and the IV bag.

I must admit it was a little freaky seeing the nurses attach bags to my husband that said toxic on them...They told us if he gets a leak in his chemo bag (while we are at home) to call them immediately, so they can tell us what to do, because they have a special way of cleaning up the chemo spills (you know because they are so toxic). 

Here's to hoping for little to no side effects!!!!!!!!!!!!