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!