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 (2nd
hospital 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 tried 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!
We are praying for the MIRICLE you all deserve! Keep fighting!!!
ReplyDeleteThank you for following my blog and your comment. I wish you the best in your journey. Feel free to connect with me on Facebook. Are you apart of the Stomach cancer caregiver group?
ReplyDeleteSandra, would it be ok to visit Paul during his chemo? Is it at Huntsman? What time? Love to all, Gary.
ReplyDeleteHugs to you all!!! It breaks my heart to read what you are going through and be so far away. You are all in my prayers. Sandra, Paul, you are much loved
ReplyDelete