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Posts tagged ‘Positron emission tomography’

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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Meh :/

Underwhelmed…that pretty much describes our trip to see the research oncologist at CTRC (Cancer Therapy and Research Center) in San Antonio. We met with Dr. Lu last year after Paul had his Whipple procedure. We actually started his first go round of chemo with CTRC but moved it to the Corpus Christi Cancer Center when it was determined both facilities would do the identical treatment. It just wasn’t worth the drive 2.5 hours each way when we could do the same thing at home.

So we caught Dr.Lu up on all the treatments and surgeries Paul has had to date and answered all his questions. We also provided him the slides and reports from his baseline PET scan and the one he had on May 25th. Dr. Lu took all that info to the study coordinator. After about a 10-15 minute wait he returned with 2 packets in his hand. Apparently there were only 2 Phase 1 studies he would be eligible for and we should take them home and read them and decide if we wanted to participate. He recommended one over the other but he really didn’t “sell” either of them to us. It was sort of like “meh…we can try one of these….I guess…” so we weren’t exactly left with the warm and fuzzies. He encouraged us to investigate other hospitals and even recommended another research facility right down the street. He also said it would be a good idea to contact MD Anderson and other large cancer hospitals and they may have other clinical trials we would like to try.

The first clinical trial, the one he recommended, was the testing of a drug that is currently being used to treat patients with prostate cancer. After reading the details of the study it appears they are simply looking for people with incurable cancer to submit to testing to see how much medication they can tolerate. There was nothing about the possibility of this drug improving his chances of survival. So yea, no thanks.

The second trial was a little more interesting in that there was a possibility it could shrink tumors and increase life span. That drug required 21 days of administration and 7 days off. Total test time was 6 mos. Paul and I are totally prepared for the possibility of his having to relocate during a clinical trial but this one just didn’t blow our skirt up so we are going to continue looking.

Maybe it’s unrealistic to expect someone to be happy to see us as a potential clinical trial subject. We were hoping someone would say “Oh yea! This one is perfect for you!” or “This one is going to be your best shot”…..something other than “lets throw this against the wall and see if it sticks”….that just didn’t inspire confidence.  So again, the search continues.

After our appointment we got to meet with financial advisers. That wasn’t fun. Very nice ladies  but it became very clear our lack of insurance was going to be a problem. In their experience the VA won’t cover this and sadly, my insurance won’t either since Paul falls under “pre-existing condition”. Some of it, like the actual experimental drugs are usually covered by the drug company but other things, like pre-trial testing (blood work, PET or CT scans, office visits, etc) will NOT be covered…..and they are incredibly expensive. I assured them I know how to make noise with the VA and they also gave us a few resources on how to obtain insurance for the uninsurable. As of right now we are considered a “self pay”. I am considering asking if they will accept one of my kidneys in exchange…..probably not…..

So that’s pretty much the scoop. We are exhausted and are looking forward to a good nights sleep so we can start again tomorrow. We continue to pray God will lead us to where we need to go to find Paul a cure.

–L

When you think there are no words….

well, after a year and a half of battling this horrible, horrible disease it looks like we are ending back right where we started from…. CTRC (Cancer Therapy and Research Center) in San Antonio. This is where we went after Paul’s whipple procedure in April of last year. Instead of going to SA for treatment, we went to the Corpus Christi Cancer Center where they followed the protocol that was recommended by CTRC. So we haven’t done any less than they would have done in San Antonio…..the problem is none of it is working.

The 6 month treatment of Gymsar and radiation didn’t work as evident from his bowel obstruction with evidence of cancer cells….then we tried 6 weeks of a 4 chemo cocktail and the results of his PET scan last week show that is doing nothing to slow down what appears to be the Attila the Hun of cancers. Several new “hotspots” showed up in the PET scan including lymph nodes in his chest, something on his ribs and a spot on his hip bone. We were told today there is nothing more available in Corpus for us to do and we need to investigate experimental treatments at a larger cancer center.

what do you do with that kind of news?

“I’m sorry but there is nothing more we can do for you here….”

This ordeal is exhausting. I always need about 24 hours to absorb news like this. I fall to pieces, cry, freak out, sob in my husbands arms about how I can’t bear the thought of even a day with out him, how I can’t believe this is even happening and losing him will be a TRAGEDY…..I mean really….I know so many people are vested in us…..I mean, our story alone tugs at the heart strings…..getting back together after 20 years…..people KNOW how in love we are and how perfect together we are….and to even THINK about a tragic end…..I just can’t….I just can’t….

We are far from being done. We both know there are trials going on at CTRC that he could do very well with. He is young, healthy and has a great attitude. They will be happy to try something new and progressive on a candidate like him, I know it. I refuse to believe there isn’t more we can do. Fighting to the finish is the only way we know how…..but the possibility of the “end” is looming larger and larger…..

I can be as positive as I want but I also have to be realistic. This thing is a monster and it isn’t going down any time soon. Knowing that this thing is continuing to wreak havoc on my husband with no sign of slowing down is disturbing on a whole other level. I can’t even fathom that nothing can stop this….how is that possible?

This much I do know….the level of my devastation at losing him will be immeasurable. I even felt some anger today….not at him of course, not at God…..but at the prospect of being left behind. I told him today if this doesn’t work he gets to go to heaven with Jesus and I’ll be stuck here in this shit hole for the rest of my days…..a life that won’t hardly be worth living. But I will be forced to live it because of my children. The concept of abandoning them in my grief simply is not an option. But the idea of spending 30 years without the love of my life is just……no words can describe……I can’t even imagine it. He goes on an overnight trip and I can’t wait for him to come home. My favorite part of my day is snuggling in bed with him and our little dogs watching food network or swamp people or some other silly show. When I get frightened during this fight he holds me close and knows exactly what to say to make me feel better. How will I survive my most devastating loss with out him?

I wish I could just live in denial…..that it just isn’t going to happen…..but that isn’t me. In fact, sadly, I have known this would be my destiny for the last 20 years. In my early 20’s I lost my step father tragically and suddenly. Being the love of my mother’s life, her devastation was beyond measure. In truth, she has never been the same. I spent 2 years in therapy dealing with abandonment issues and my intense fear of loss and my insistence that I was going to find the love of my life and I would lose him tragically just as she had done. Over the years I was finally able to let go of my “death thing” and not worry so much about losing my loved ones. So of course, this all seems an incredible premonition or cosmic joke.

even if it doesn’t come to fruition and he manages to beat this thing the damage is already done. Every ache and pain is cause for alarm and will be even if there is a complete cure and he lives another 30 years. Is this a lesson in faith? I don’t believe God works that way. He didn’t give Paul cancer so we could learn lessons. He didn’t give it to him at all. Things like this just happen but lessons can be learned through the suffering. My faith is the only thing that is going to get me through this ordeal. My husband will take me as far as he can but eventually it will be down to me and God. He will not let me down…..the question will be if I can put all my trust in Him.

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