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Posts tagged ‘Pancreatic Cancer’

3 Times a Charm

I have been struggling the last week or so with the notion that we are heading back into battle. The “Summer of Love and Fishing” is over with the return of our son Daniel from time spent with his father. It went pretty fast and the move ate up a lot of our time and energy but it was still a fun time spent together. We certainly haven’t stopped the Love and Fishing with us taking kayak excursions at least once a week if not more. We have enjoyed these things more than I can say. It lifts my heavy heart to see Paul enjoying the outdoors and communing with nature. I would enjoy it more if he actually caught some fish but hey, that seems to be MY job! lol! And what a good sport he is when I smoke him! I know he likes to hear me squeal every time I bring one in!

But these last several days I really fell into a funk. It seems when I get really scared I just clam up. I hardly speak and that is so not “me”. It’s almost like a rabbit hoping if it’s quiet enough the scary thing will just go away…but in our case it’s not. Even with all the challenges these last 10 weeks Paul has enjoyed a renewed energy and good health. He has been eating well, maintaining his fabulous 200 lb. frame and his color is amazing. He looks so healthy! But the fears of what has been going on with no treatments the last 10 weeks terrify me….us…..

He had his baseline PET scan yesterday. We are bracing ourselves for the worst. My biggest fear of course is they are going to say the disease progression is too far gone……but I have serious doubts that’s realistic. If it were at that point he would feel like crap right? He certainly wouldn’t look or feel as good as he does. He keeps telling me “you know, the results ARE going to say it’s spread. But the NEXT PET scan, after I receive some of this treatment,  will show improvement.” Forever the fighter…..

So after a few anxiety attacks, lots of thought, tears and prayer I managed to pull myself out of it. The thing that really did it for me was walking into my church. We are very involved with our church and just love it. Our church families have been such an incredible support to us. The choir takes the month of July off and I usually miss a few church services during that month. I spent a few Sundays working on the new house, unpacking and arranging things. That really didn’t help me emotionally though. I got so caught up in “other stuff” I really suffered. When Daniel came back we attended as a family last Sunday and it felt so good to be back. We have a little Children’s part during the service where Amy, our Youth Ministry Director, sits up front with the kids and does a little bible lesson. She talked about how sometimes we get busy over the summer and miss church and that’s ok but keeping your relationship with God alive is sort of like riding a bike. You may fall off but you pick yourself back up and start again and just keep on pedaling! I am always so amazed to go to church and hear a message that seems to be custom-made for ME.

So when Paul asked me if I wanted to sing the solo he had picked out for me this week and to sing a duet at our fundraiser on Sunday I was all…..Meh  :/  ……….I was pretty deep in my hole, not even wanting to emerge to do something I enjoy so much like singing……and he said he would handle it if I wasn’t up for it but I said no and that we would practice with Kay and Courtney on Wednesday night. Something about walking back into that choir room and working on these 2 beautiful songs did it for me. My spirit was renewed and I left that night much more back to normal that I thought I could possibly be at this point. Music can be such a healing medium.

I am slowly getting built up again for Mondays start of round 3 of treatment. For those that don’t know, Paul will be starting an “off label” study. It includes 3 chemo drugs. It is FDA approved for breast cancer and lung cancer and has shown to be about 33% effective in trials for people with pancreatic cancer. That 33% went into partial or complete remission. The rest of the patients in the trial also showed some improvements (slowing of growth, etc). Those stats may not seem good but with this type of cancer they are GREAT! Paul has done a lot of research on clinical trials and he is very pumped for this one as are his doctors. The VA has approved this treatment and also said they have available clinical trials at Audie Murphy hospital in San Antonio in the event we are not satisfied with the results of this one. As we have said from the beginning, we just want OPTIONS and after many weeks of scrapping and fighting we have them.

I just have to keep giving this to God and trusting that he is going to lead us to the place we need to be. It’s so easy to misinterpret His path. I thought for SURE MD Anderson was the way to go but it just wasn’t. So I just need to trust that this is where we are supposed to be. With all the calls I made and that were made on our behalf, all the pushing and shoving and begging and pleading, screaming and shouting to political figures….it just didn’t happen. I will forever be disappointed and shocked at how all that went down. How the best cancer research hospital in the country wouldn’t help us at all….no recommendation….no assistance financially…..no nothing.

But I just have to trust this is the way it’s supposed to be. That this off label treatment, the 3rd time, will be the charm. We are as ready as we will even be and with so many people standing behind us in prayer, with good thoughts and positive energy we know we can make it.

Peace,

Lisa

 

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Update on where we are now

Keep this moving around. Eventually it’s going to fall on the right ears.

False Start!

I am reminded of my days in competitive swimming when you are on the starting blocks and one swimmer inevitably dives in before the buzzer resulting in a “false start”. That’s kind of what happened at CTRC today.

Paul had shown interest in participating in the clinical trials for a Pancreatic Cancer Vaccine and that is what delayed todays chemo appointment. Apparently, we were supposed to have some blood work done and one injection of the vaccine BEFORE starting chemo. So we got him to apply to the study officially, signed all the consent forms and did the blood work to make sure he qualifies. They will call early next week to see if he qualifies and he will either get chosen to receive the vaccine or be a test subject who will NOT receive the vaccine. If he is selected to receive the vaccine we will drive up to S.A. next week and get the shot then go the following week for the first round of chemo. So miscommunication resulted in a two-week delay….but we are good with that. If there is ANY shot he can get this experimental vaccine we want in on it.

Other than that Paul also got his last small tube removed. He didn’t feel a thing……I thought I was going to BARF! I am sorry, but I can’t get used to watching a doctor pull a 2 foot long tube that looks like a huge worm out of my hubby’s insides! UGH! I am NOT cut out for the medical field OBVIOUSLY!

Paul also got a prescription for some enzymes to help digest food better….especially if he indulges in something with more fat or cholesterol than usual. I really thought they would have given him those by now, as recommended by our friend who is 5 years into his whipple/cancer fight…..but they wouldn’t give them up until today. Paul hasn’t had a diet snafoo in a while….he has gotten pretty good at regulating his food consumption along with appropriate rest and exercise….but this will be another tool in the arsenal to make sure he continues doing well.

So the trip wasn’t a total loss although the chemo was delayed……but he has a couple more weeks to feel good and play some music and have some fun……..

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