Monday, January 30, 2012

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 kind of looks like 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!!!!!!!!!!!!

Friday, January 27, 2012

Chemotherapy starts Monday...

We met with our oncologist today.  We were not totally prepared for what he told us about the chemotherapy that Paul will be receiving.  After we met with him last time, we were under the impression that Paul would be receiving three rounds of chemo (every 21 days).  He told us today that if he tolerates the first three rounds well, he will get another three rounds (six total).  We were not overly excited about that.

Paul will receive Epirubicin and Cisplatin via infusion on this Monday and will actually be going home with a continuous pump of 5-FU (chemotherapy) that runs for two weeks. Even though the 5-FU is a two week course, we have to go back once a week to have the needle changed because of his port.  We go back in 21 days to start the whole process over again (Epirubicin, Cipslatin, and two weeks of 5-FU).  We may be doing this for up to six sessions.  Paul will only have one week between each chemo session that he is not actually receiving chemotherapy.

It was a bit overwhelming to talk about all the possible side effects and what to watch for.  The doctor was very straightforward.  He told us it was going to be very rough.  He confirmed that Paul will lose his hair, but that really is the least of our concerns.  One of our big concerns is keeping the nausea at bay.  It is already hard enough to get food in him.  In addition, he has to make sure he gets at least two liters a day of liquid because of the chemo drugs.  One of the drugs can cause kidney problems.  The doctor gave us several prescriptions to help with nausea...I really hope they work! They will be monitoring his blood levels throughout the whole process.  We will be going to Huntsman at least once a week...

This too shall pass...we are dreaming of taking the girls to Disneyland in October.  For now, we will take things day by day and enjoy each moment we have!

Tuesday, January 24, 2012

Cancer is a teacher...

I remember the phone call we received almost two months ago (November 28, 2011).  It was the scariest thing to hear that your husband has stomach cancer (aka gastric cancer).  I felt this sudden rush of panic and horror.  My mind started to race…What is going to happen? Why him? How bad is it?  Is he going to live and for how long?  I cannot adequately describe the feelings of shock and fear.  I, like most everyone else, thought that cancer happened to other people.  While I am not the one with cancer, I most certainly did not expect my husband to get it. 

One of the first things I did was start to research stomach cancer on the internet (actually, the first thing I did was cry).  I could not believe what I was reading… According to the American Cancer Society, the overall 5-year survival rate for people with stomach cancer is 28%.  What? Are you kidding me?  Everything I read indicated one reason for the poor outcome is because most stomach cancers are found at an advanced stage (approximately 80% are found at stage IV). 

Fortunately for us, they got the  “testing” process rolling quickly.  We knew within two weeks of finding out that Paul had cancer, it had not metastasized.   However, we did discover, after the surgery, that it was more invasive in his stomach than originally thought.  This meant he would be staged as IIa  rather than 1b.  If you look at the statistics, there is less survival for IIa, but it is still considered curable/treatable.

The doctors originally thought that Paul got stomach cancer due to the Helicobacter Pylori bacteria he had a few years back.  It is known to cause cancer.  He was treated for it and appeared to have gotten rid of the nasty bug.   However, the type of cancer Paul has is linitis plastica, which is NOT caused by H-pylori.  His stomach cancer is a “rareish” form.  It could be genetic.  We will be investigating that further, so if it is, our children can also be tested.

I have come to the realization that statistics don’t necessarily mean much.  The statistics don’t take into account age, the will to live, and most likely other health problems that could affect outcome.   According to the American Cancer Society, the average age of people diagnosed with stomach cancer is about 70 years old.  They indicate that almost two thirds of the people with stomach cancer are 65 or older except for people with linitis plastica (this tends to affect the younger people).   While the statistics are grim for Paul, he was diagnosed at 51 years old; he has a huge will to live; and is otherwise very healthy!

I am not going to lie…cancer sucks!  It turns your life completely upside down.  The terror you feel when you hear that your loved one has cancer is something I never dreamed I would experience.   It is so very hard to watch the one you love so much, suffer so much…but…

Cancer can also be a blessing.  Cancer is a teacher.  It teaches you patience, love, compassion, humility, charity, gratitude, and many other things. 

One of the most important things that cancer is teaching us is to rely on our Heavenly Father.   We have had some very spiritual experiences while going through this trial.  I cannot adequately explain in it words, but I can actually “feel” the prayers of others.    It carries us through the tough times. 

We feel very blessed.  The love and support of our family and friends has been so amazing.  I received a phone call a few weeks back from a dear friend.  I was having a very tough day.  I felt like my faith was completely depleted.  I wanted to know why Paul had to suffer so much.   He had been throwing up non-stop for several days after his surgery to remove his stomach, and was so miserable.  Was God not listening to my prayers?  I felt like I was exerting all the faith necessary to heal my poor husband (not to mention all the faith and prayers of everyone around me).  She told me that I needed to remember, faith is believing in the process.   At first, I thought what does that mean.  I knew it sounded right.  I also knew there was something very profound in what she had just said.   The first thing I did when I got off the phone with my friend was drop to my knees and say another prayer (she told me she would do the same after we hung up the phone).  I immediately started to feel better.  Then, I felt like I wanted to research what my friend had said…So, I started to research it…

I found several articles that had a profound affect on me.  Here are links to two of the articles that really affected me:

As I read the message from Richard G. Scott, I felt as if he were talking directly to me.  When he said, "Even if you exercise your strongest faith, God will not always reward you immediately according to your desires. Rather, God will respond with what in His eternal plan is best for you. He loves you to a depth and completeness you cannot conceive of in your mortal state. Indeed, were you to know His entire plan, you would never ask for that which is contrary to it even though your feelings tempt you to do so. Sincere faith gives understanding and strength to accept the will of our Heavenly Father when it differs from our own. We can accept His will with peace and assurance, confident that His infinite wisdom surpasses our own ability to comprehend fully His plan as it unfolds a piece at a time," I knew that this was a direct answer to my prayer.  I was seriously wondering why my prayers had not been answered.  I now realize that what Paul has been enduring has been strengthening us both.  

While we were at Huntsman yesterday getting Paul's port placed, I was amazed at all the people with cancer.  As I looked around the waiting room I could see fear, sadness, love and compassion.  So many people, so many stories.  I had the opportunity to meet a woman from Montana named Sue.  Her husband was undergoing his fourth surgery due to throat cancer.  Paul and I had noticed them when we first got there.  He had a tracheotomy, and just plain looked miserable.  Paul and I agreed that you can always find someone who has it worse than you.  

Anyway, she told me that they had been in a motorcycle accident back in the 70's which had caused them both to lose a leg.  So, they both had a prosthetic leg.  She said other than that, they had both always been very healthy.  They discovered he had stage 4 throat cancer in 2010...long story short, he was still getting surgeries to try and improve his quality of life.  

As Sue and I sat and chatted, we discovered that although our husbands had different types of cancers, we still had similar issues to deal with.  Her husband was struggling with eating even though he still had his stomach.  It was very hard for him to swallow.  We shared ideas and thoughts...we discussed how much cancer changes your view on life...It was really nice to get to know her.

Before we had gone to Huntsman yesterday, I had been wishing Paul had a different type of cancer, with better statistics.  I was thinking it must be easier with other types of cancer... After going yesterday, I realized that it doesn't matter.  It doesn't matter what type of cancer he has or the statistics.  You will always find someone who you think has it better or find someone who has it worse.  What matters is how you deal with what you have been given.  Life is about finding joy in the journey, even when life gets tough.

As I am typing this, my poor husband has what we call "the gacks" (we learned that term from another cancer patient who, like Paul, had a gastrectomy).  Basically, the food gets stuck and doesn't want to go down.  Sometimes there is no rhyme or reason to it.  He can eat something one day, and then the next it won't work.  He gets these lovely, huge, spit balls that he has to spit up and then he starts to make this "gacking" noise.  Usually, he ends up throwing up after all the heaving.  It is not a fun deal.  It makes him very tired.   It kind of reminds me when a cat gets a fur-ball stuck in its throat and is trying to get it out...

Some of our kids friends have been here when the "gacks" start.  They aren't quite sure what to make of it!  Obviously, I am not too concerned because I am still sitting here typing.  The first few times, it really freaked me out.  Now, I know he will work through it.   I still hate it when it happens, but I don't panic like I did.  I feel sorry for him!  I wish that he didn't get the "gacks"!

I have faith that Paul will be healed from this cancer.  I also know that it must be God's will.  I  know that I must remember to have faith in the process...Paul is going to start chemotherapy on Monday, January 30, 2012.   We have a rough road ahead of us.  I am not looking forward to it (obviously, he isn't either), but I know that we will learn something from the entire journey.  

Sunday, January 22, 2012

Paul gets his port tomorrow...

We have to be at Huntsman tomorrow at 6:00 a.m. for Paul to get his port installed.  They said the procedure takes about 45 minutes.  He will be under mild anesthesia.   I found this website that explains how the port is used for chemotherapy.   Unfortunately, this man did not survive his pancreatic cancer... I wanted to link to this because it helped me to understand how the port was going to be used.

The port needs about a week to heal and then the chemotherapy begins.  We want to get the chemo started to get it over with, but at the same time are not looking forward to it at all!  Paul is just starting to get some energy back and feeling somewhat decent, so we hope the chemo doesn't totally knock him off his feet...

Thursday, January 12, 2012

Met with oncologist today...

Our oncologist told us today that Paul will not be having radiation, just chemotherapy.  He said that they discussed Paul's case with the tumor board, and they feel with his type of cancer that radiation would not be beneficial.  He told us the plan is to do three rounds of ECF (epirubicin, cisplatin and fluorouracil 5FU).  He will need to go for chemo every 21 days.   He indicated that this is a "tough" regime and that we may only make it through a couple of rounds...I guess the side effects can be brutal.

The doctor told us that the CT scan we had done yesterday (yep, we were down at Huntsman yesterday too) looked good.  There was no evidence of cancer at the moment.  He also said the tumor board felt like Paul was at a low risk for having peritoneal seeding because all of his lymph nodes (31) were cancer free.  That was encouraging news. 

Anyway, Paul will be going to Huntsman next week to have an echocardiogram to make sure his heart is up to the chemo.  He will also be getting his port put in for the chemotherapy and blood draws. The port needs to be in place for at least a week and then the chemotherapy starts.

We are feeling a bit apprehensive about the chemo...not looking forward to it...hoping that all will go well.  There are times I wonder if he should do it...but then he reminds me that he wants to do all he can to ensure that the cancer is gone.  Especially since this particular kind of cancer has a very high recurrence rate.  

Paul made me promise him that I won't shave my head to make him feel better if he loses his hair.  I told him that would be an easy promise for me to keep!  

We also met with a nutritionist and a genetic counselor at Huntsman today.  The nutritionist gave me a few more helpful hints...trying to get more calories in Paul, without all the fat...I can't believe how hard it is to get healthy high calorie foods in him.  Most high calorie foods are loaded in saturated fats!  The last thing I want to do is clog my poor husbands heart!

We have discovered (thanks to cousin Pat) that there is a huge amount of cancer on Paul's dads side of the family.  Basically, all of Paul's great aunts had breast, uterine, or ovarian cancer.  In addition, there is some pancreatic cancer and breast cancer in 1st cousins as well.  Anyway, long story short...there is a genetic mutation that can cause certain types of cancer.  If you have a BRCA1 or BRCA2 mutation you may be at higher risk for breast, ovarian, stomach, pancreatic, and a couple other cancers.  The counselors told us that Paul's insurance will not cover the test for us because he is male and has never had breast cancer.  We don't exactly have $3,500 sitting around to cover the cost.  We are going to talk to our family members about some other things they suggested.  Bottom line, it would be nice to know if Paul is a carrier for our children's sake.  We will see what develops with this. 

Sunday, January 8, 2012

Pictures after the J-tube

Picture taken day after J-tube was removed...

Looks a little halloweenish...
PICC line

The lovely, milky white, TPN that provided nourishment through his PICC line...

Thursday, January 5, 2012

We went to Huntsman Cancer Institute today...

We met with Paul's oncologist today.  Paul has a rare diffuse type cancer called linitus plastica.  It is a tough cancer to treat because it is very aggressive.  It also does not respond as well to chemoradiation as other gastric cancers might.  Our oncologist is leaning towards just doing chemotherapy.

Long story short, we don't know a game plan yet.  Our oncologist is meeting with the board of doctors (Gastrointestinal Department) on Tuesday to discuss Paul's case.  Evidently, the board consists of other oncologists, surgeons, and gastroenterologists. 

For now, Paul has no evidence of cancer.  It was all located in his stomach as far as they know, but this particular cancer is notorious for peritoneal seeding, which can cause peritoneal carcinoma.  Peritoneal seeding is not visible on PET/CT scans.  You don't know it's a problem, unless it begins to grow.

We are just going to remain positive!  Paul is doing well.  He had his PICC line removed this morning.  He is so happy that he is not attached to his TPN bag and that he no longer has the J-tube causing him pain!

By the way, I must say, Huntsman was a pretty impressive place.  They have already set up an appointment for us to meet with a nutritionist and to go for genetic counseling.  Because of Paul's family history of cancers, they are going to be doing some research to see if our children need to be aware of potential problems.

Tuesday, January 3, 2012

Great news!

We went to Paul's doctors appointment today and they removed the J-tube!  He was so happy to have that tube gone!  I think I am almost as glad as he is...Now I don't have to flush it anymore or clean it! 

Paul is eating around 1,800 - 2,000 calories a day by mouth now.  Because he is doing so well, the doctor said that after tomorrow he will no longer need the TPN!  He will probably lose some weight that he has gained back, unless I can get him up to about 3,000 calories a day.  We will keep working on that!

Anyway, because they are going to discontinue the TPN, the PICC line will be coming out in the next day or so!  The plan for now is to put in a port for the chemotherapy (this can also be used for TPN if it becomes necessary again).

The doctor is very pleased with Paul's progress.  He is such a trooper!  I am so proud of him!  He truly is an amazing person...

The doctor heard about the fiasco last Friday with Paul's blood labs.  He said that it was someone from the lab who called us.  He said when he got home Sunday (from his cruise), he had a message from the lab with Paul's info...he said he was surprised they did not call his office to speak to the on-call physician.  Anyway, he said they are working to find out who it was that called us.  They are going to make sure the individual gets some training.  That would be a great idea!

We are going to Huntsman Cancer Institute on Thursday for a doctors appointment.  Hopefully, we will find out what is going to be happening with his chemo and radiation.  It will be nice to have a game plan in place.