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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

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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…..

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.

Some good news!

I know that last week Lisa posted about our delay in treatment.  I got an update on that as well as some very welcome news along with it!

The reason that we had the delay in the first part was because of the clinical trial that I agreed to participate in.  In this trial they are developing a vaccine for Pancreatic Cancer.  I won’t go into the specifics now, but the whole thing is fascinating. Apparently though this vaccine needs to be administered one week before Chemo starts.  So that pushed us back a little.  In addition to that this is phase 3 (of 3) of the study.  This is the one that is presented to the FDA for approval before commercialization of the drug. Because the FDA strictly scrutinizes this particular aspect of the study, they are very particular about whom the allow as a subject.

Yesterday I received a call from my Oncologist (He’s also the one leading this study).  He old me that they had done a thorough review of my medical records and have determined that I’m not a candidate for this study.  You see, they are developing a vaccine for pancreatic cancer.  I don’t have pancreatic cancer.  I have Ampullary Cancer.  Although they are similar, they are different.

The Ampulla is somewhat similar to your body’s bile duct.  Bile ducts come from the Gall Bladder and the Liver, the Ampulla comes from the Pancreas.  Because this particular type of cancer is so rare, it doesn’t get its own classification.  It simply just gets lumped in with the pancreatic type.  Biologically though the two type of tumors are very different.  The Ampullary tumor is far less aggressive than the Pancreatic tumor.

According to Devalingam Mahalingam, M.D., Ph.D, my new oncologist, the rate of recurrence for Amullary Cancer, without Chemo and Radiation is only about 30%.  In fact, there are no clinical studies on Ampullary Cancer to even suggest that Chemo and Radiation reduce the chance of reoccurrence.  In my mind, that all very good news.  I have to be honest, the odds the doctors were giving us prior to yesterday were not anywhere as good as this.

Dr. Mahalingam did say that the treatment for both Pancreatic and Apullary tumors are identical.  He went on to say that in his clinical opinion I should go ahead and submit to Chemo and Radiation.  I am in total agreement.  So I will begin on Monday afternoon.

From my perspective this is simply affirming what I’ve believed all along.  Once this treatment is over, I get to return to my regular life again!  There is definitely a light at the end of the tunnel.

I have said many times, “God isn’t done with me yet.  I’ve got way too much to do!”

Mom’s Home!!!

I made it back yesterday around 3pm……leaving him behind in that hospital…that just felt totally wrong…..we have a “no man left behind” kind of attitude here in our family and it just……let’s just say I am glad it’s only for 24 hours.

Of course there were lots of sloppy puppy kisses and hugs and a few tears when we all reunited. My home was clean and neat and there wasn’t even a DISH in the SINK! I was so proud of them and it appears everyone held up pretty well. I have some concerns about my daughter but I prefer to leave those private……I worry about her so much…..this sweet child loses her mother to cancer at age 9 and now she has to watch her father go through this too? My heart breaks for her every day…..over and over……but she is doing MUCH better than we expected but there are just a few things I am keeping a special watch over…..I am such the mother hen……

So we got to spend some time together, the children and I, until it was time for me to go to my first dance rehearsal for The Full Monty! I had missed the entire first week of rehearsals but am confident I can catch up! Since my character Jeanette doesn’t show up until the end of the first act it looks like I might also get to play a dancer getting a lesson early in the show! There will be random couples dancing while Debra sings “Life with Harold” , one of my favorite songs! Cyndi’s choreography is terrific and with some practice we are going to look GREAT! And it was so nice to see so many friends and get hugs and I didn’t break down and cry once! It really recharges my soul!

Even though the house looks great, we still have food (I am SHOCKED!) and I am forever grateful to my incredible mother in law for the kid care services, it’s easy to see “Mom’s HOME”. I was greeted with ride requests, $ requests (of course) “I need this from the store”, “Mom I forgot my band uniform!” at 7:30 AM….thanks Daniel!

 (-_-) …..*SIGH*………..Mom’s Home………

You know, the part I didn’t anticipate was how much my body would hurt…..physically……I mean, I feel like I have been run over by a truck….and this was BEFORE the dance lesson! ha ha ha! The dancing actually helped me feel BETTER! But I wasn’t really prepared for what spending 12-14 hours in a hospital room for 7 straight days would mean….they had a lot of construction at the hospital and I would thank God every morning for the gorgeous weather for my one mile hike thru barriers and fences to get to the hospital entrance….

San Antonio reminds me so much of home….Cincinnati….and it comes with better weather! Here on the Gulf Coast it’s flat…now we have gorgeous palm trees and beautiful water but I always enjoy the rolling hills and huge oak trees of San Antonio. And I relished every walk to and from the truck…..because hospital air sucks……it makes me tired and it’s so artifical…it has to be of course….but it isn’t natural to be in that environment for so long without breathing in fresh air…..you just can’t believe the difference you feel sucking that into your lungs the minute you hit the doors….it’s like my body was desperate for it……but I have never been very comfortable in hospitals over all…..but that is changing….

So not only does the air suck but, for me anyway, I have muscle soreness all over. I have this habit of tensing up when I get nervous. After a few minutes I will realize it and relax but then minutes later I will be doing it again…..unconcious habit…..toss in the fact that I am handling IV’s and tubes and plugging things in and out and helping him in and out of bed has left me feeling like I fell down a flight of stairs…..missing 2 weeks of my Zumba class didn’t help either and a hotel with no workout facilities….I can’t imagine what I would have felt like if I hadn’t been taking those classes for the last two months…..

But I am home now and Paul is right behind me! Provided no fever shows up, he is scheduled to be released today!! He really progressed over the weekend and shaved 2 more days off his anticipated release date! Such the over achiever! Even better it looks like he is HITCHING a ride home to see his girl! My good friend Margot, who came and sat with me while Paul had his surgery, happens to be in the area today and said she would be happy to bring him home and save me the TRIP!! Can you believe? God is so good to send these wonderful people into our life to help us out! At almost $4/gal (WTH??!!) for gas we appreciate the ride!!

I will be really happy to get him home. He is going to heal even FASTER being able to sit on the back porch with his little dog by his side…..or working at his desk and listening to his music on his stereo……it’s just a better environment for healing…….and then I can relax……a little…….

Post Surgery Day 2

 Day 2 was GREAT! I came in and Paul was pretty bright-eyed and bushy-tailed. He was VERY happy I brought his laptop so he could do a little Facebooking and surfing. They had already moved him to a chair by the time I got there.

Dr. Halff came in with his trail of ducklings (residents!) and announced that Paul has the best lungs the ICU had ever seen! He checked him out and said his recovery is remarkable and to keep up the good work!

So we sat around and dozed and surfed and listened to some tunes today. Not much more than that though. Paul is still pretty tired and couldn’t concentrate very well. Paul insisted we did do a little work though with me returning some phone calls and taking dictation for some e-mails for Little Dog Entertainment…..can you believe?? It may have only been for 30 minutes but he WORKED the day after this surgery! lol! That’s my man!

He finally got moved into a private room out of ICU around 5pm. We shared our Skyline Chili recipe with our favorite ICU Nurse Juliana and we loaded Paul up for a chair ride to the other side of the 12th floor! See Ya! It’s much quieter so I am certain he will get a restful sleep tonight. I was there when they got him into bed and he is doing unbelievably well. The hardest thing about moving is all those tubes! But we got him in without incident and it felt great for him to stretch out again after a big day sitting up! So I tucked him all in, gave him lots of smooches and headed back to my temp homestead for some leftover Chinese food.

I know there have been some questions about all his tubes and wires and why can’t he have ice chips and things like that. Here is what he has:

tube down into his nose into his stomach– a surgery like this is pretty traumatic on the system and it essentially shuts down for a few days. unfortunately the body continues to produce acid so they use the tube to drain it out. This prevents ulcers, irritation of incision sites, etc.  Once there is evidence his system is up and running again (he passes gas) they will remove the tube and he may start with ice chips. Until then NO FLUIDS at all. He is burping and that is a sign things are starting to work again but we still need a good fart! Paul is pretty much a pro at farting so this shouldn’t take long! ha ha ha!

epidural-still has the epidural for pain control and will have that in until his system is up and running and he can take pain medication orally.

catheter-this will stay in as long as the epidural is in. We don’t need Paul peeing all over himself since he is pretty much numb from chest to knees.

Central Line-Paul has a central line in his neck with 3 ports on it. It’s temporarily stitched in and dressed with a bandage. The 3 ports hang out and they hook up his fluids, antibiotics or any other fun things they need to pour into him. Today he got a cocktail for protecting the lining of his stomach and small intestine!

Drain Lines- Paul has three drain tubes. One on either side of the incision and one towards the middle. This drains any blood and excess fluid from the incision area. They drain into bulbs (like a turkey baster! lol!). 

He also has one more small IV in his hand and is taking oxygen. That’s a lot of tubes! They are constantly monitoring these fluids and have reported everything looks exactly like it’s supposed to!

The plan for tomorrow is to get him up and walking some. Paul did mention when he got out of bed and into the chair this morning he could feel things moving around in there. Getting him up and moving around will help get his system started again.  Once we do that they will take out the tube in his nose and he can start on some clear liquids. And that’s all this poor man wants is some water! Those that know Paul well rarely see him without a big tumbler of water with lots of ice and lemon! That’s been the hardest part according to him! So hopefully he will get that reward after a good show tomorrow!

thank you again for all the prayers and well wishes!

Paul’s Surgery 4/12/11

First off, I can’t start this blog post without give a HUGE shout out to my best pal….GOD…..for getting me through this ordeal!! Yes, we all received the results we had hoped and prayed for…..but the most IMPORTANT thing I received was the STRENGTH to make it through this so far. I was able to kiss Paul goodbye and KNOW that he was safe in God’s hands….no matter what the outcome. So I got a big “Thank you Jesus!” on my lips because I was sure I would sob all morning and I was as cool as a cucumber.

So we got up at 4 and had a 5:30 check in. Paul was in the surgery ward by 7:30, processed and prepped and wheeled back by 8:30. My wonderful friend and pastor’s wife Margot drove up to sit with me and it made such a difference! I was really prepared to go it alone….I didn’t want to inconvenience anyone….and I just thought I could handle it….but I was so glad I listened to my husband, my mother, my mother-in-law and some friends…when they all said I should have someone there with me because it made a HUGE difference. So I am forever grateful for my blessings of wonderful, caring friends!

The wait really wasn’t too bad….we both started getting a little antsy at the end but that was after 4 hours. Fortunately, there was a phone in the waiting room so the O R nurses would call periodically to inform the families on how their loved one was doing.  We spent time with a woman whose husband was having some metal put in his shoulder and a pair of sisters who were there with their brother who was having a bottom lobe of his lung removed. All the phone calls we received were very positive. (Praise God!) I was notified when the surgery began, when they removed the head of the pancreas and when they were sewing him up. It was so fantastic and I wished ever hospital in the world did that. But this is part of the reason UTSA was named the Best Hospital in San Antonio.

I also need to mention how revered Dr. Glen Halff is. First off, I got a personal recommendation from a friend of mine who has known him for many years and says he is a wonderful person and very dedicated to his craft. All the staff and doctors we spoke with kept saying how lucky we were to get Dr. Halff. One resident said he did Whipples textbook and the other said “BETTER than textbook!”. Those are the kinds of thing you want to hear about the surgeon who is going to have his knife in the love of your life!

So after he was done they took him up a floor to ICU. Nurses came and escorted us to the ICU Waiting Room and we waited less than 30 minutes before I got to see him. Margot and I had the pleasure of talking with a large family  from the Valley whose father was receiving a liver transplant. They had gone to another hospital first (In Seattle) and said they were treated horribly. They said UTSA has been a MIRACLE for their family!

Then I finally got called back to see him, Paul was still pretty groggy but I was shocked to see how GOOD he looked! I mean, he had a nice color and didn’t look like he just had major surgery. His anesthesiologist tells me he was “better than perfect!”  Dr. Halff tells me everything went just like we had discussed. They did take a little of his stomach only because he had some scar tissue from a surgery he had as an infant. Other than that, removal of the gall bladder, the bile duct, some of the small intestine and the head of the pancreas (40%). fortunately, the 60% that is left is the part that produces insulin. There is some risk of developing diabetes with this operation but Lord willing, we will dodge that bullet.  He also said he saw NO EVIDENCE that it had spread to outlying tissue and that the definitive pathology report would be back in about a week.

So he is resting comfortably in ICU with an epidural for pain and several drain tubes and other gross things we won’t talk about here. They did already remove one of the IV’s and the chief resident remarked that Paul is already progressing much faster than the typical patient. I told him my husband is an overachiever! Ha ha ha!

I have been asked to bring the score to The Producers and his laptop tomorrow……can you believe? And of course I will…..I wouldn’t dream of denying him…….but I will make sure he doesn’t over do…….his nurse, a lover of theatre and Skyline Chili (!), is excited as well!

So I thank you all….your feverent prayers and good thoughts were felt and helped carry us through! But we aren’t done yet! So keep ’em coming and keep checking with us for updates here or on our Facebo0ok pages! Peace!

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