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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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…and the adventure continues.

It’s Tuesday morning and today is supposed to be the second dose of my first round of Chemo.  That means that about 9:00 this morning Lisa and I will drive to San Antonio.  Except that it makes for a long day, it’s really not that big of a deal anymore.  I’m a little unsure about how today’s going to work though.  I have a cold.

When I check in to CTRC the first thing they do are blood tests.  The want to check everything and make sure that my blood counts are where they should be before they give me drugs that are going to totally knock them out of whack.  The problem is the Chemo drugs knock down your body’s resistance to infections.  Since I already have a cold, what are they going to do?

A cold is a virus, not an infection.  Maybe they proceed anyway?  Maybe they just pump me full of IV antibiotics to try and kill off all the germs.  Maybe they admit me to the hospital until they can safely give me chemo.  I just don’t know what the answer is.  I guess I’ll know in a few hours.

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!”

False Start!

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

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

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

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

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

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.

Excuse Me While I Freak Out…..

I try to allow myself this every so often….an opportunity to just let out all that pent-up stress and fear and anxiety that seems to build up every once in a while. Sometimes I tell the kids that I am going to take a bath and not to be scared if you hear mom crying…..that sometimes I just need to get it out and it’s ok and I will be alright……this is one of those nights….’cept there are no kids, no jacuzzi, it’s super late and I am mildly intoxicated so this should be interesting….

Our trip to see Paul’s Primary Care Physician here at the VA was uneventful…..I didn’t really care for him…..it seemed like we knew as much about this procedure as he did……he couldn’t answer a lot of the questions we had, which we anticipated, so no surprise there…..but he kept stressing the seriousness of this procedure….calling it “the mother of  all abdominal surgeries”…….saying we are looking at 7-10 days in the hospital….unless he develops pancreatitis…..

See, it’s NEVER a good idea to be poking around your pancreas. Never. It’s a very sensitive organ and if it’s disturbed too much it essentially releases a bunch of enzymes and toxins into your body and pretty much royally messes you up. Things like tremendous pain, nausea, vomiting and in some cases severe complications…..

Notice in the diagram this Whipple Procedure is pretty much right on top of the pancreas.

The clock is ticking down…..I know it’s coming and I think it’s going to be worse than I am prepared for. But how do you prepare for this? You can’t so…..whatever…..but it’s like this is all a bad dream…..sometimes I will go through my day and think…”I’m ready to wake up from this”…..but I never do….

My hair is thinning….it started back in the fall with some teenage drama but it really ramped up since the holidays. I clean massive amounts from my hair brushes……stress does that to me…always has…..but this is the worst it’s ever been. This is going to add 10 years to me I know it……this changes you…..something inside you changes when this happens.

We are talking about things I have been dreading……living wills….orders….things like that. Why are we discussing if I can afford to keep our house “if” …….and I don’t even want to say it out loud for fear of “putting it out there”, you know? I don’t even want to entertain the notion! But you can’t dodge it….you HAVE to face it……you HAVE to talk about it …. because it’s a possibility…..a REAL possibility….not one of these “I may walk out the door and get hit by a bus” fantasy conversations and everyone hugs and says “don’t worry, that will never happen”……

It does happen…..it may not be a bus but it sure feels like being hit by one. There is still a part of me that is in total denial. Total denial. How is it possible I just kissed and toasted the new year with my beautiful husband, watched him play in a smooth jazz band, watched dancers dance to his music and we tossed a shitty 2010 out on its ear and vowed 2011 would be better…..only to have him on an operating table 3 months later with a rare and aggressive form of cancer, being cut in half and having major abdominal surgery??? How does this happen to a man that is only 44 years old??? I just can’t wrap my head around the idea that this is EVEN HAPPENING!

But why should we be exempt from troubles? “This is life”…..blah, blah, blah……I know, I know………..

Tonight I wallow…..

There will be more unpleasantness tomorrow…..logistics is going to suck……thank God my mother in law is here. I know I can count on her to just come stay here with the kids while I am gone. Rachel is going to freak I know it. She has been very homesick on her mission trip with the church for Spring Break. If we are gone 10 days that is going to be hard on her. I don’t want them coming up…at least not at first. If he is recovering I will bring them up for a weekend but I can’t have them around during the critical parts of this…..I just can’t….

So we have to look into possible hotel rooms. Which we can’t afford of course. Thank God we have friends in the hotel industry and I know the Cancer Society has free rooms so we will look into that tomorrow.  I certainly raised enough money at all my Relay For Life events so time to use it! I just want something close….that’s all I care about….because I won’t be there much. Will I only be allowed in during visiting hours? I can’t imagine it….because they are going to have to drag me out of there…..I don’t even know….and that, I am sure, is the root of the fear….

I feel like I am preparing for a hurricane…..my yankee friends might not understand since I come from the land of twisters where you only have 20 seconds to hit the basement…..hurricanes are much different…..It’s almost like a sporting event….you start getting early reports so you begin paying close attention…then you begin preparations….make sure you have canned goods, propane, bottled water and plywood……days pass and you start making plans on where you are going to go….what you are going to pack up and what stays…..TV constantly giving updates…..the last one didn’t look too bad so we sent the children off with Grandma to some friends who were inland and we stayed to “ride it out”……….the part of all this I didn’t expect……was that eerie feeling you get the day before landfall…..when everything is boarded up and you know your chance to flee has passed…..and everything is quite and you have no idea what is going to happen next……it’s Impending Doom….that feeling….and this feels the same way.

A Prayer for Paul

We received this from a friend of a friend! I thought it was simply beautiful and a good prayer for people who might not know what to say to God. Sometimes it’s difficult to find the words but this one is perfect……Thank you Hilda!!

Compassionate Father, our brother Paul Klemm needs Your tender loving care as he has been diagnosed with cancer in the small intestine.  He will have further tests to determine treatment, however, he is sure he will have surgery to remove the cancer.  He has much in his favor, Father, as You well know, and he is young.  Father, I ask that You guide his surgical/medical team and give them the wisdom to find the proper treatment.  Father, I ask that You give him, Lisa, and the rest of his family comfort, strength and the courage they will need as Paul begins his treatments. May they find that the treatments be easy and not make him ill. Please fill them with Your grace and  give them Your wonderful peace that surpasses all understanding. In Jesus’ precious name I pray.  Amen.

Amen!
 
 

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