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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.

No more trips to San Antonio!!!!

We finally got things worked out with an Oncologist here in Corpus Christi!!  I will start receiving my treatments here on Tuesday.  That means no more commuting to San Antonio each week!

When I was originally diagnosed with Cancer, we immediately tried to get into M.D. Anderson in Houston.  If you’re not familiar with M.D. Anderson, it is the top rated Cancer Treatment and Research Facility in the U.S.   Unfortunately, because the V.A. was paying my way, M.D. Anderson said NO!  You see, the V.A. has such a terrible reputation for paying their bills that many facilities and doctors would prefer not to accept those patients at all.  Fortunately we found the Cancer Therapy and Research Center (CTRC) in San Antonio.  It is part of the University of Texas at San Antonio.  Best of all, it’s one of the top 3 rated Cancer centers in the State of Texas.

My surgeons came from CTRC.  I can tell you, I would not have changed a thing where that was concerned.  My surgeons were fantastic.  I can not say enough about them.  If every there comes a time again where I need some God-Awful abdominal surgery, those are the guys I want doing it!

After surgery, and while  was still in the hospital I met some of the Oncologists from CTRC.  We talked about treatment in very general terms.  I explained to them how I felt about treatment and what I wanted.  I told them that I am young (I’m 44 years old) and I’m otherwise healthy.  I want them to be as aggressive as they possibly can be to get rid of anything that was missed in surgery.  More than anything else I dont’ want to be back here in 2 years because something new has popped up.  Lets go after it now and get it the first time!  The Doctors smiled at me, with that “Oh boy!! This is going to be a fun one” look they get when they’re given free rein.  More than anything else, they agreed with everything I said and convinced me that CTRC was where I needed to get my treatment.

Now, let’s fast forward a month or so.  I actually go to CTRC to meet my Oncologist.  I’m asked to participate in a clinical study.  They’re trying to develop a vaccine for Pancreatic Cancer.  I’m thinking, “This is exactly why I decided to stay at CTRC!!!”  I did, however find a Radiation Oncologist in Corpus Christi.  Once those treatments start, they’re every day.  There is no way I’m going to commute or worse yet, live in San Antonio (away from my wife and kids!) for almost 2 months.

As many of you already know, I was disqualified for the study.  It was a little funny, it seemed to come as a great revelation to them that I don’t have Pancreatic Cancer.  I knew that.  My cancer is similar, but is actually Ampullary, not Pancreatic.  Once I was disqualified I started doing even more research.  I found that my course of treatment (without the vaccine) was exactly the same at CTRC as it would be anywhere else.  Even Bob’s Tire and Lube and Cancer Shop would treat it exactly the same way.  So with that in mind, why am I commuting 3 hours, each way once a week?

Friday I met my new Oncologist.  Dr. Aftab Mahmood.  He is at Cancer Specialists of South Texas (That’s the one on Rodd Field Road, for those of you in the area).  I really like this guy.  He’s young, I can understand everything he says.  Best off, he actually has a personality.  I genuinely feel that I’m in good hands.

Dr. Mahmood says that I can start my Chemo immediately.  That means that Tuesday, instead of getting up and packing up the car for any sort of contingency or emergency (That’s really Lisa’s doing.  I’m more “seat of the pants”, but that’s not really a surprise, is it?) then driving all day.  Instead of that, we’ll drive 20 – 25 minutes to the Cancer Center and be home within 2 hours!!!!!

One down!

It’s Friday Morning and I’m almost through my first week after starting Chemo.  It’s been a crazy ride this week!

Lets start with Monday Morning…  Lisa and I are driving to San Antonio so that I can start my chemo.  We were about 15 – 20 miles outside of San Antonio when my phone rang.  It’s CTRC (Cancer Therapy and Research Center) to tell me that I’m not going to be able to start Chemo this morning.  It turns out there’s a billing problem.

I immediately see red!  First off, I’ve been going to CTRC since April.  Surely they could have worked this our before.  On top of that, I had already been driving for a little over 2 hours when they called me.  I was pretty sure I was going to try to find an Oncologist in Corpus Christi, but this really sealed it for me.  Lisa immediately got on the phone with the VA.  I got on the phone with CTRC and within an hour we had the two of them talking and got things worked out.  In the mean time Lisa and I were sitting in a Burger King not sure if we should go home or proceed to San Antonio.

Once we got to CTRC it was fairly uneventful.  Once they start giving me Chemo, it only takes half an hour.  I wait longer for the blood tests results to come back than anything.  It’s all very comfortable though.  The people are wonderful ,the recliners we sit in are very comfortable.  Best of all, in my mind we’re moving forward.

The ride back to Corpus Christi was uneventful too.  I was just about ready to chalk this whole Chemo thing up as a piece of cake when it hit me (about 8:30 or 9:00 that night).  I’m not sure I can describe the feeling..The sensation was as if the whole room were spinning.  It only lasted about 15 – 20 minutes, but I was sure that if this continued for a while it was not going to end well.

The next morning I felt OK, just weak.  I managed to be a productive member of society, I just moved a little slower than usual.  That night I even managed to run a music rehearsal for the cast of The Producers.  I’ll admit, I was wiped out afterwards.

Wednesday Morning I woke up relatively early because I had to see my Radiation Oncologist.  Wednesday was my “Fitting”.  They create this form-fitting pillow that will cause you to lie on the machine the exact same way each time.  They also marked up most of my body with black magic marker.  That way they can line me up in the machine a little easier.  Then top it all off, I got three little tattoos.  The tattoos are in case the magic marker comes off.  That way they will always be able to tell how I should line up.

I had a talk with Dr. Stewart (My radiation oncologist), I explained to her that I really needed to find a medical oncologist in Corpus Christi.  She agreed to help me find one.  I’ll tell you, this is one of the reasons I really love Dr. Stewart:  Once she found a Doctor for me, she didn’t have one of her nurses call me.  Dr. Stewart actually called me herself.

Wednesday afternoon I developed a fever.  Now Lisa and Rachel and the entire cast of “Full Monty” as well as the cast of “The Producers” have all been sick.  I’ve done everything I could to avoid it, but you can’t forever.  I wasn’t too worried, but my instructions were to call if I ever develop a fever of over 101.  I was at 101.6.  I called several numbers at CTRC and kept getting voice mail.  Eventually I just went ahead and called Dr. Mahalingham’s cell phone.

The doctor told me that he didn’t actually believe that my blood counts would drop that quickly.  After all, I only had one treatment so far.  He did think that this was worth watching.  He told me to take 2 Tylenol and see if the fever dropped.  If it didn’t then I had to got to the emergency room.  Fortunately it did drop and I didn’t have to go to the hospital.  It spiked once or twice more during the night, but then it was over.  In the morning I got a call from my nurse at CTRC.  She also told me that if it came back at all during the day I was to go directly to the Emergency Room.  Fortunately it never did.

I did really feel run down all day yesterday.  I attributed that to the fevers and general crud.  At the end of the day, I finally forced myself to sit down and have a meal.  I had really lost my appetite all day.  Strangely, once I was done eating I felt better.  That’s when it occurred to me that my blood sugar had bottomed out.

You know, between the surgery, the chemo, the crud, the emotional anxiety involved with all of this; it’s really hard to tell sometimes what the causes are for feeling poorly.  As it turns out, this was a lesson I learned (or thought I had) right after surgery.  I’ve got to keep eating or I’ll feel bad.

Well it’s Friday Morning and it’s time to get ready for work.  This weekend, as all of them are, is really busy.  That’s why I’m taking Chemo early in the week.  So that I can make it through the weekends.

If you’re in town, come see the Full Monty at the Aurora Arts Theater.  The show it terrific and we still have plenty of seats left this weekend.  Don’t wait though, there are only 3 more weeks to see this show!!  Let me know if you need tickets.

…And the adventure begins!

This morning Lisa and I are on our way to San Antonio.  Today is my very first round (with many more to come) of Chemo.  I can’t say that I’m looking forward to this.  I will say though that I’m looking forward to getting this whole thing started.

Today we’re going to CTRC (Cancer Therapy and Research Center) in San Antonio.  There they will put a drug called Gemcitabine into me.  The whole thing should only last about a hour (at most).  As soon as I’m done receiving the juice, then I’m going to meet with my surgeon who is going to remove the last of the tube remaining from my surgery.  That, I’m very excited about!!

One of the things I’m going to ask my surgeon and oncologist this morning is, can I have a drink?  I have not had a single drink since I originally got sick back before Christmas.  If you remember we originally thought that my liver was the problem.  As it turns out they didn’t even touch my liver during my surgery!

I’m not a big drinker, but occasionally I’d like to have a beer or a glass of wine.  Take last night for instance.  I was at the Theater last night working with the Cast of The Producers on some of their music.  It was a great rehearsal and the cast sounded terrific!  In addition I got some great news from Mary and Charlie Chapa.  I would have really like to have a beer or a glass of scotch last night to celebrate, but since I’ve never actually got the green light for that, I abstained.

Well, looking at the clock it’s time to get my shoes on and start heading to San Antonio.  Once again I’m reminded of Frank’s line (from Rocky Horror).  I want to walk into CTRC, hold my arm out and say, “Do your best inferior ones!!!!”

Road Trip!

And today we are off to see the Oncologist……which is good……Paul has been doing GREAT….incision is healing nicely….no problems other than a few diet snafoos (No chocolate milkshakes EVER…and 2 cheeseburgers from McD’s is ONE too MANY) it’s been pretty uneventful.

Paul has also been getting out and about which really helps…..Paul does much better in life when he is productive. He just isn’t a “sit around and do nothing” kind of guy…..so after a few shopping, errands and trips to church he came with me to Full Monty rehearsal last night!

This is a really big cast with a LOT of music and dance numbers so Paul came in to work with some of the men’s songs and help them tighten it up a bit. Everyone seemed to have a lot of fun and from what I heard, there was definite improvement!! So it was a great evening out having fun at the theatre….he will go back and work with them again on Monday….

So I know I am ready to see the Oncologist……I feel like we are really over the hump where “surgery recovery” is concerned and it’s time to start moving forward again. Today he will probably get a physical exam and a consultation. The Pancreatic Tumor Board already met about 2 weeks ago so they have already seen the pathology and surgical reports so I am hoping this is the meeting where we will learn “how much, what type, how often,how sick am I going to get” answers……

We met with the Oncologists briefly when Paul was in the hospital. They were very clear he would need BOTH Chemo and Radiation. We were a bit surprised about the radiation since the tumor was removed, but according to the docs, radiation stimulates the cancer cells and makes them more receptive to what the chemo is there to do….kill them. That was a good enough answer for us. Bottom line is we are prepared to do whatever it takes…..and we are open to experimental treatments if that becomes necessary. And UTSA is the place for us to be.

We gave a lot of thought and consideration to WHERE Paul will receive his treatment. Since he is covered by his VA benefits we are really shackled to the system. But we do have options……We can have it done at the VA…..um, NO……we can have it done with a local Oncologist if we transfer the case to him and he accepts VA Benefits…..(Paul wanted to see Dr. Saloum but he doesn’t accept VA so we just stopped looking since he is the GO TO Oncologist in Corpus…..I don’t want second-rate handling my husbands treatment……period…..) or we can continue to go up to San Antonio with UTSA and CTRC (Cancer Treatment Research Center) handling his treatment. It’s pretty much a no brainer…..plus let’s face it….this is a rare and aggressive form of cancer…..we want the” latest and greatest” at our disposal IF necessary.

I am looking forward to answers……how often……how much…..those kinds of mysterious questions that have been BANGING around in my head since February 28th (D Day). 

And the truth is…….I need some straight answers……prognosis answers…….just for my own sanity…..

Please say a prayer or send a food thought our way and we will keep you posted.

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