Thursday, January 24, 2013

More on the home front...

Where to begin…January 14th, I went in to the doctor with lovely pains in my left side.  Unfortunately, I know those pains all to well…my diverticulitis was back…actually, it was probably never completely healed from my episode in December. 

At my appointment, the doctor agreed we would use a different type of antibiotic (I had used this previously and it worked well).  The reason they don’t give this antibiotic on a regular basis is because it comes in IV form or via injection.  There are no pills available to take.  He suggested I do the IV, because even though I would have to come in daily for a 15-minute IV drip, the shot was quite painful.

I elected to do the IV.  The nurse attempted to put a peripheral venous catheter (tube used to get IV’s) in place.  She tried to put it in my forearm…completely missed the vein…then she attempted to place it in my left hand…after much digging around and causing me great pain, she realized that she had just blown my vein…she then moved on to my right hand…the same thing happened…all of the sudden I felt very woozy and light headed…I told her I didn’t feel right…the next thing I know I was waking up…evidently, I passed out…I have never passed out before…that was a strange experience…fortunately, she caught me as I started to fall forward and she laid me back on the exam table.

Needless to say, after having no success at getting the catheter in place, I was given an injection.  Yep, it hurt!  Because I had to have six doses, I had to go in daily to receive an injection…I was so glad to have that over with…thank goodness it seems to have worked…I am feeling better.  In all honesty, I would probably elect to do the injections again if I had to, because it only hurt for about an hour afterward.  It beats taking six antibiotic pills a day and it is more effective!

Because I felt woozy for a while, I called my friend to come and get me.  I was in no condition to drive home.  I am so grateful for amazing friends who help me all the time! She even got to be there to support me while I got my injection…lucky her!

Paul had chemo number two on Tuesday, January 15th.  Because I was not feeling very good, our neighbor took him up to Huntsman and our daughter, Sheila, met him there.  She stayed with him and then brought him home.  Once again, feeling so grateful for the help we received.

Paul actually had been having a few good days…then Wednesday night hit…it was so strange all of the sudden he was so sick…he was so nauseous and started vomiting…he vomited so hard that he yelled out because he said he felt like someone was stabbing him in the right eye.  He could hardly open it.  He said it was very painful…I called our friend who is a doctor…he had me check on some things and we determined that it was something just to keep an eye on…no pun intended!

With time, Paul’s eye didn’t hurt as bad...when we awoke the next morning I noticed that something looked really funky about his eye…well, not actually the eye itself…it was not bloodshot or anything…his eyelid and the area around his eye was really swollen and droopy…evidently the force from vomiting did something to the tissues around his eye…the doctors don’t seem to concerned about it…it is starting to get better.

Paul continued to be violently ill on Thursday, January 17th.  What a sad day to be sick…let me explain why.  Our daughter, Katie, has some friends, Justin and Emily, who wanted to help us by getting a fundraiser set up.  They had arranged for Peter Breinholt, Ryan Shupe, and Nancy Hanson to perform at a private concert for our friends and family.  It was to be held that evening at 7:00, at The Castle Reception Center (which was also donated for the cause).  What an amazing fundraiser!

The fundraiser was a surprise for Paul until a couple days before it happened…then we had to tell him about it.  He was so excited…he couldn’t believe that they were willing to do this for him.  Needless to say, we were both very sad that we were unable to attend this special event…we both cried….we so desperately wanted to be there.

The fundraiser was a huge success.  We heard that it was absolutely amazing!  We are grateful for friends who recorded it for us and for family who took pictures!  A huge thank you to Justin and Emily for getting this arranged!  Also, a huge thank you to the performers!  What amazing people they are to take time to do a private concert in our behalf! And of course, a big thank you to all our wonderful family and friends who came out to support us!

Paul was not doing much better on Friday, so he ended up at the Acute Care Clinic at Huntsman.   Because I had to get one of my lovely injections that afternoon, a friend took him down for me.  Another friend took me to get my injection and then drove me down to be with Paul.  I was still not feeling 100%. 

Paul received a couple liters of IV fluids and was given larger doses of pain meds and anti-nausea medication.  He slept peacefully.  I was relieved to see him so comfortable.  It was determined they are going to put a vent in to Paul’s abdomen to release the pressure from the gasses caused by his bowel obstruction.  This vent should help with his nausea and pain.  The only problem is we are still waiting for it to be placed.  We meet with the doctor who is doing the procedure tomorrow…which means more waiting until it gets placed.  Obviously, if we had our way it would have been placed by now!

Paul has been doing better now that we increased the anti-nausea and pain medications.  He had his third round of chemotherapy yesterday.  Interestingly, last night he started to feel really yucky again and throwing up…now we are thinking maybe this is a result of the chemotherapy…the same time frame as last week…

I am happy to say that Paul only had the one episode last night.  He has done fairly well today.  He has been very tired because of a new medication they started, but other than that he did better than usual today.

Paul is scheduled to do three more rounds of chemotherapy and then have a scan.  If the tumors are shrinking then we will continue…if they are not shrinking…well, I just don’t want to go there right now…

We have been so blessed. My girls have been off track for two weeks with one week to go.  My friend coordinated a sign up sheet to have the girls go somewhere every day while they are off track. Thank you to all the wonderful people who have taken our girls for us while they have been off track.  I have the best friends ever.  This has helped us out tremendously!

Thank you to everyone for all your kindness and concern…the plates of food, the phone calls, the notes, etc.  We consider you our angels!

Thursday, January 10, 2013

And the saga continues...

I was so glad when the holidays were over!  Last year we brought Paul home on December 23rd, after a painful 11-day hospital stay (had his stomach removed).  This year we brought him home from the hospital on December 24th, after another painful 4-day stay (2ndhospital stay in December due to bowel blockage). 

As I type this, I feel so many different emotions.   I feel a lot of sadness, some anger, some jealousy, some gratitude, some self-pity, some fear, tiny bit of hope…but mostly I just feel depleted!  As I watched people go to parties…enjoy the holidays…I felt envious…I wanted to have just one normal day…just one day without anyone sick…one day without having to be a caregiver…one day to really enjoy the holidays…just one day…that day never came.   I am not inside Paul’s body, but I think it is very safe to say that he feels the same and then some…he would love to have even a little bit of his old life back.

Unfortunately, cancer doesn’t take a holiday…it doesn’t care…it is like a hurricane or tornado trying to rip apart your very soul.   Not only for the person who has it, but the person who loves the one suffering.  Cancer is painful both physically and emotionally. 

A word to the wise, do not get sick over the holidays!!!  We experienced a lot of “falling through the cracks” again this year.  It really is a catch 22 because it is important for people to have time with their families over the holidays…but what about those people who are ill and in need of assistance?  Don’t know the answer…I can see it both ways…it is just really frustrating!

On Friday, January 4th, we met with Paul’s oncologist to discuss the “new” chemotherapy treatment they wanted to try.  Our doctor was very frustrated as he explained to us that Pfizer (drug manufacturer) was not willing to let us use the drug.  We were shocked…what...this makes no since…how can they not allow us to try the drug…it is our last hope.  He said he was going to try to get it approved a different way….could take at least 4 weeks…felt like Paul didn’t have 4 weeks to wait….decided we would start on palliative chemotherapy on Tuesday, January 8th.  We both were shocked and saddened.  Needless to say we also felt very angry!

As we left the office, I kept thinking this just does not make since.  I knew this drug, Torisel, was FDA approved to be used in kidney cancer, but I didn’t think they could stop us from using it just because it was not approved for gastric cancer specifically. 

Well, it turns out I was right.  I had a voicemail when I got home, from someone at Huntsman.  I called her back and she told me that she was not able to get the drug approved through my insurance because according to my new insurance company (as of January 1st) we were not enrolled with them.  What??? First off, why were they still trying to get my insurance to pay for it and secondly, why didn’t I have insurance? I asked her why were they trying to get approval through my insurance company if Pfizer said we could not use the drug?  She explained to me that Pfizer can not tell the doctors how to use the drug.  To me that was great news!  There was still hope…we can still use the drug. 

I quickly got on the phone with Paul’s former employer (retired December 17th) and asked them what was going on. Why did we not have insurance? They said their system had not been updated yet.  I told them our situation and they gave me to a manager. She said she would get it fixed as quickly as possible and then call me back (it finally got in the system yesterday).

After I talked with Huntsman and called about our insurance problems, I called my sister back (she texted me that she had important information). My sister had sent an e-mail to Pfizer and they quickly called her back and told her that the doctor can use it…there must have been some confusion…they can not tell a doctor how to use medications.  Basically, the same thing I was told from the rep at Huntsman. 

My sister had also started calling Mexico and Canada, before she spoke with Pfizer, to see if it was available there…just in case we had to go out of the country to get treated.  We appreciated the help…fortunately, we won’t have to go out of the country!

Our oncologist must have been confused.  He is from Spain…obviously they do things differently there with regards to medication and payment issues…
After doing more research, we discovered the issue was not whether we can use the drug, but rather who is going to pay for it.   It is a bit on the pricey side…but we knew we needed to start treatment.  Fortunately, my father-in-law was able to help us get started.  We are still working with the insurance company to try and get them to pay for the drug, but because it is not listed as a treatment for gastric cancer, it is not very likely they will pay…

I called the doctors office after we got this all figured out ( about 3:45 p.m.) to let them know everything we found out.  Our doctor was very excited when I told them we were willing to pay for the drug to get started…

Paul had his first round last Tuesday, January 8th.  He will receive chemo every Tuesday for the next 5 weeks.  When he has completed his six-week cycle, they will do a CT scan to see if the tumors are shrinking.  If they are shrinking, we will continue with more treatments.  We do not know if this drug will work, but it is our last option…there is research that shows it could work.   

Paul is not feeling well.  He is in pain and nauseous most of the day.  He is very tired most of the time and feeling quite depressed at the moment.  It is hard to see him depressed…he has always been so positive and upbeat.  He has just been through more than anyone can imagine…I only know because I see him all the time.  My heart truly aches for him. We are working to get him in the pain management clinic as soon as possible.  My hope is that the tumors will start to shrink and will lessen his pain. 
Thank you so much to everyone for all the help, love and support we have received.  We have truly been blessed! We feel your prayers!