Just another WordPress.com site

Posts tagged ‘Health’

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

 

Advertisements

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

Roadblocks SUCK!

I knew it just seemed toooo easy……I called MD Anderson today and they made out like all I needed was a Referral and Authorization from the VA for Paul to get treatment…..I thought, “well, that was easy..” I have done that several times in the last year and a half….getting “vouchers” for his treatment….it’s a pain in the butt but not impossible to get….

however…..

I returned home to find that the VA contacted Paul and informed him they don’t cover “Experimental, non-FDA approved” treatment.

That was certainly something we didn’t expect. And the news hit him pretty hard…..

Again, we have exhausted the typical FDA approved protocol for his type of cancer.

Now I was a little taken back at the news….shed some tears….but it didn’t last long. I started sorting things out in my mind….

#1- fact is, the VA hasn’t wanted much to do with this from day 1 and it’s been  nothing but push and shove with them anyway….what’s ONE MORE THING?!? Seriously…this is me we are talking about here. If anyone knows how to make a stink in the VA system it’s me. Having spent our entire careers in sales we don’t accept “NO” very easily. We are beyond tenacious.  They didn’t call me “The Bulldog” for nothing….cause I just  won’t let go…..and I sure won’t let go here.

#2- We still have my insurance kicking in in about 6 weeks. The gal at the VA did tell Paul even if the VA DOES decide to cover it (and this gal made it very clear she would fight for us!) it would still take some time to get it approved. Because this request really has to go far up the chain of command. In the meantime, we are getting closer and closer to my insurance becoming valid….of course, I don’t know if MINE would cover it either. And that’s something I am going to check out tomorrow.

#3- There HAS to be some sort of drug company sponsored  grants available to pay expenses for patients willing to submit to drug trials. You can’t tell me we are the first POOR PEOPLE who have walked in the door saying “Please help us”. There has to be grants and funds available, ESPECIALLY for a young, otherwise healthy, willing to do ANYTHING ampullary cancer patient. He is a rare bird walking into the Research Center and I am confident someone is going to want to sign him up.

#4- if all else fails I will be standing in front of anyone who will put a microphone in my face so I can tell them the story on how the VA is going to allow a 45-year-old father of 2 die because of bullshit VA red tape. No one wants to see that, especially in an election year. I can make a LOT of noise people….we will not go away quietly. I don’t relish the idea but we will do what we have to do. And we know people who know people and we could quickly make this a potential national news story.

So what can you do? Right now, just PRAY. Pray for our strength and guidance while we navigate these stormy seas. Pray that God will intervene and show us the path we are supposed to take. Pray that the right people are put in our path so we may have assistance getting him to the people who are going to save his life. Pray that we remain strong in our faith. If you aren’t a praying person we ask for your good thoughts and well wishes. This is going to be a tough fight, made even tougher but with our God and our family and friends behind us we will persevere!!

–L

It was the best of times…..it was the worst of times……

Often times when I speak of our courtship I often say this quote. Carrying on a long distance romance for 10 months is an unusual thing for most couples. When Paul contacted me through Classmates.com after so many years my heart was just a flutter. We spent 2 days on the phone and I knew….I really KNEW that this was something incredible. I flew down to see him after 30 days and while packing to return home I said “you are going to marry me you know”. That’s how positive I was that this was the perfect time for us.

After that we traveled back and forth every 2 or 3 weeks. We would cram so much love and fun and adventure into a weekend. Seeing him walk town the tarmac, so tall and strong and handsome, it was like something out of a movie. People would stare and smile as we embraced like a year had passed rather than just a few weeks. Of course, those few weeks apart felt like a year. We talked of our past and planned our future together. We went to all our favorite hang outs as kids and  shared our hearts like no others before.

Sundays were the worst. So many tears were shed at the airport….embraces that were never long enough….crying as I went through security….the looks of sympathy from TSA agents. I would cry most of the way home or drive home to lay in bed and breath in his scent on my pillow…crying at the thought of a day without his hugs and kisses…..

it was the best of times….it was the worst of times…….

Now, almost 8 years later, we can look back on those days so fondly, knowing what a blessing they were to us. It was such a special and unique time.  Something not many people get to experience.

This experience with Paul’s illness has almost paralleled our courtship experience…..and it feels so strange to say that. Coming home today I was thinking of how many blessing we have received as a result of this experience. We have been surrounded by family and friends in a safe cocoon of love and support. From hugs and prayers to words of encouragement on Facebook, meals and financial support….it’s been incredible. We have seen and felt God’s love in a way few people experience. How many people go through their entire lives and never feel this? How incredible is that? and it’s all because of this journey ….as horrifying as it is….it’s still filled with blessings.

I spend my days thinking of my love constantly. I miss him every moment and can’t wait to come home so we can hold each other again. As our close friends and family know, we have always been “lovey dovey”. We have grossed out the children more than once with too much PDA for their liking and now it’s ramped up even more. We are connected on a level like no other…..we look in each others eyes and see directly into each others souls…..

Once again…it’s the best of times…it’s the worst of times…..

Truthfully, that’s been the theme of our entire marriage! lol! We have had some wonderful highs….successful business working together….raising 2 wonderful children….building our dream home from scratch….. living our lives surrounded by family, wonderful friends and the most adorable dogs a person could ask for……a closeness to our God gained through faith, trust and service.  We have also experienced some terrible lows as well….the crash of the real estate market meant the end of a business we treasured, struggles raising teenagers, financial disaster, the pending loss of our home and of course cancer…..

But you know,  I wouldn’t trade it for the world. Often you hear the saying, “It’s better to have love and lost than to never have loved at all”. Even though we still have lots of fighting left to do I won’t lie and say I haven’t thought of life without the love of my life….and I can honestly say it IS better to have loved….I wouldn’t opt out of this for anything. The thought of spending my life without ever having experienced a love like this would be much more tragic than losing him to this disease.

It is the best of times…..it’s the worst of times…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

Bingo Balls…..

Paul had his 3rd chemo treatment and the side effects are getting weirder and weirder. Neuropathy is a new one of course. That’s cold sensitivity in the extremities.  Pain and tingling in his hands when he reaches into the freezer. Taking things out for dinner is no longer an option without using a cloth to pick it up. No more ice in drinks since it causes a sensation like his throat is closing up. Never a moment without socks and slippers on our tile floors. At the moment it only lasts about a week. That may change since chemo has a cumulative effect so we expect it will eventually last from treatment to treatment. There is a chance this could become permanent….a big fear for Paul, especially since he is a musician. Tingling fingers do not make for easy flute or saxophone playing.

A new one this week is cramping in his hands. It doesn’t hurt apparently but his hands will start to curl up on themselves. It happened while one of the chemo drugs were being administered and happened once more when he got home. All normal side effects according to his nurses. Just another interesting adventure in chemotherapy….

You wonder where it’s going to end. I spent some time last night searching Ampullary Cancer and found some sites with some survivor stories. It was good to hear some people in their 60’s and 70’s (since that is the median age for this type of cancer) speak of having their Whipple Procedure and chemo/radiation 3 years, 5 years, 7 years ago and how well they are doing. Sadly there are more stories of loss and suffering….being told you have 6-8 mos. to live…..burying your father 6 mos after his “life saving” surgery….

Even the long-term survivors spoke of the long and slow recovery. Taking a year to regain 10 lbs. another year to get to 15 lbs. back. Paul’s weight loss is difficult for me to see. My once robust strong husband is a shadow of his former self. But his eyes are bright and his life force is strong……and of course, I wonder how long he can hold on to that.

I KNOW he will hold on to that until the bitter end….there is no doubt….but sometimes that “will to live” just isn’t enough. If it was, a lot more people would have defeated cancer…especially pancreatic cancer….and Ampullary is so rare they treat it and lump it in with Pancreatic. So I browsed through support sites among pictures of Steve Jobs and Patrick Swayze….knowing those guys didn’t give up either but…..they still lost….

I’m sure I will have a change of heart when I hear the doctor tells us Paul is responding to the chemotherapy. I know that is the catalyst for all of these thoughts…negative thinking?….I don’t know if I would call it that….but I am even more consumed than usual with Paul’s health.  Getting the PET scan results next week is all I can think about. Like a marble tumbling around in my head…cancer still growing? looks like it’s improving? “I’m sorry Mr. Klemm there is nothing else we can do.”? Like a head full of Bingo balls each with a different result. So until next week those balls will keep tumbling around, keeping me up at night…keeping me occupied…..

More tears…..

More tears today….came out of the blue to be honest. Paul and I were talking about the physical effects his treatment has been having on his body and he says, “not to mention the psychological aspects. I’ll confess, I’m a little worried about Friday” ….Friday? What’s Friday?……his first PET scan. This is where we find out if the new treatment is working.

Paul and I were both surprised when he didn’t have regular scans with his first treatment but his doctor insisted it was ok not to. I’m sure they take everything like his age, health into consideration when making these decisions…..but it did seem strange not to get regular updates on how this was going. Sadly it took a medical complication like a bowel obstruction to show us it wasn’t working.

Anyway, this” before church conversation” of course set the wheels in motion…..almost like pre test jitters……is all this working? Are they even going to really be able to tell from this scan? and of course the one question that weighs the heaviest….what if it isn’t working?

That question alone is enough to send me spinning out of control into this incredibly vivid scene of life without my husband. The awfulness of it is unbearable. And let’s face facts…..it’s a distinct possibility.  Looking at him, standing at the podium at church reading the opening prayer with the congregation…..I am overcome with emotion. Eyes keep welling up and spilling over. It got embarrassing after a while since I sit in front of our entire church in the choir loft. My friend’s hand me tissues but I just can’t seem to get myself under control. Wave after wave of grief, fear, uncertainty…….sigh…..it was a rough service. But I made it through, gathering myself together when Paul went up to sing a jazzy little number about Jesus being the rock in the storm……

But even after a nice lunch with Paul and Daniel and my traditional retreat to the bedroom for my Sunday nap….I still can’t shake it. A little more crying then finally…sleep…..where I wake up with a little more perspective on things. I look around my home, noticeably empty after a successful pre-moving yard sale, and there is no time for tears. There is much to do and time is running short to do them. Packing, organizing children before they leave for summer adventures, more packing, more selling of unnecessary things, home hunting and of course, cancer fighting……always fighting……

 

Tag Cloud