Labor day weekend

Hey all…enjoying the extended weekend here hope the same for you as I’ve just been horsing around with the kids.  Getting our swimming fix in as this is the weekend that the pools close.  This weekend has brought us the historic Gov. Palin VP selection, the hurricane Gustav watch, another college football season got underway and unfortunately my beloved STL Cardinals have dug a big enough hole that a small miracle might be necessary for them to see postseason action now. 

 My heart is heavy this weekend for the George Fleschner family with the passing of Irene.  As George told me ”Irene went home to be with Larry”.  The faith of their entire family is inspirational from George down to his grandchildren.  That family has definitely had more than their fair share of struggles recently, but yet it wouldn’t be evidenced in speaking to any one of them.  Except for the obvious “tough” circumstances with which we met last week, I especially enjoyed speaking with Paul and Kristin.  I was happy to hear the confidence in Kristin’s voice when discussing her own recovery.  Her outlook is inspirational and I can empathize with her struggle as she returns to Washington DC and returns to work.  She and her family remain in my prayers and I’m evermore confident in her pending success.

Don’t know much more today, just wanted to check in.  We have been enjoying the weekend….Rachel and I are going to make homemade pizzas tonight and its time for me to brown the sausage…Will talk to you all soon.

Joel

A new look

Hello –

It is funny how, on a daily basis, we receive so much information in this world, without really registering it until we experience some other event in our lives, which sheds a whole new light on the information we had already received.  (Whew — follow all that!?!)

I had known the Locks of Love program existed, in which you can donate hair to be made into wigs for children who are experiencing hair loss due to medical reasons.  (www.locksoflove.org)  But this past weekend, I suddenly felt ”the itch” to change my hair style, and I could not think of a better way to help someone else.

Quite honestly, I was nervous and still had doubts as I sat at the beauty salon this morning, waiting for my turn.  I was glancing at the magazines, trying to decide which short cut I would like.  All the pictures in the Vogue and People magazines had the women with long hair — no help!  As I sat down in the stylist’s chair, I explained to her that I wanted to donate my hair, but that I could not find a do that I wanted.  She handed me about three magazines, all with only short hair styles.   Reminiscent of my college days of cramming before exams, I quick flipped through the first magazine and picked a style.  She proceeded to part my hair down the middle and form two pigtails.  As she was cutting the first pigtail off, all I could think about was the small girl, about 9 years old, that Joel and I saw towards the end of his daily radiation treatments at the IU Cancer Pavilion.  She had lost all of her hair – most likely due to the radiation and chemotherapy that she was receiving.  Thinking of her, or perhaps another little girl, who will gain so much self-esteem and confidence by simply not walking around bald, made my small sacrifice easy.

So, I will not be shocked if you do not recognize me in passing (as already happened in the public library today as I passed a friend).  As this website emphasizes, it truly is wonderful to “pay it forward.”

April

Back to School

One week down and we’re settling into a groove.  I even think Vincent might be starting to like school now, although if it were an option I’m sure he’d still prefer playing the Wii as opposed to spelling tests.  But then again, who wouldn’t?

Technical Error

The website is experiencing a technical error that is preventing comments from posting.  It should be fixed later today.  Thanks all.

Joel

Whew!!

Hey all….Does anyone feel exhausted???  I actually slept better on Monday evening….I didn’t sleep a wink on Tuesday…finally laid down around 6am Wednesday…..I guess the adrenaline was pumping rather well.  Trying to get back into the swing of things today as I worked a little.

As April indicated, we still have an uphill climb in this battle.  Surgery is ultimately the only cure for my type of cancer.  Whereas 3 months ago, the doctors were a split decision on my fate between “not eligible” for surgery and a “long shot” for surgery as the disease seemed to be much too advanced and beginning to metastisize.  As of the great news on Tuesday, as long as the disease doesn’t spread into other areas of my body between now and say 3 months, I am now a candidate for surgery.  I know people are asking why wait??  I asked it too and it is a valid question.  Why wait and see if this spreads if we can cut it out now??  There really is only one reason…and that is to spare me and my body from going through an uneccesary surgery and the recovery from it if there is no ultimate payoff at the end.  The form of cancer that I have is very aggressive and spreads quickly and ultimately claims the life of many of the people infected by it.  There are no crystal balls and I don’t have an expiration date stamped on my back, however, the best guess of survival rate without surgery would be in the 12-18 month range barring miracles (of which I believe in).  So the theory would be to wait for 3 months check again to make sure it hasn’t returned in other areas prior to having the surgery as opposed to having a very difficult surgery and recovery time in what might be my last year.  Nobody wants to spend their last days recovering from a procedure that didn’t help anyways.  I lose nothing by waiting.  If we find out in November that I’m not eligible for surgery…then in reality, I’m not eligible for surgery today.  The wait also allows my body more healing time from the radiation treatments and allows me to be better prepared physically when the surgery does take place.  The doctor gave me 3 treatment options but in inspecting them I believe there really is only 1 option for my situation.  My body won’t handle anymore radiation so we can’t go that route.  Chemotherapy is an option but really….that’s just drinking poison when you get right down to it and not a long term solution.  Doing nothing was an option presented but the science says 18 months on average and I’m greedy enough to want more than that.  So therefore surgery is the only option if we can do it.  When I asked my oncologist to define survival in the arena of 10, 15 or 50 years and how do I get there…He stated quite quickly that there is no way he can get me there without surgery in my future.  So irregardless in my mind if the success rate printed in books is less than 15% or so it really doesn’t matter as I’m playing the stakes all in.  My children require that of me and quite frankly that’s the only route I can conceive of in my mind.  I don’t believe in transferring the statistics to my situation anyways.  Unfortunately, that is the present situation.  The one good thing about having so few options is that it makes it easy to render a decision and begin to work the plan.

Now, the good news in this whole dialogue is how well we performed on Tuesday.  As Rachel told me, she was happy that I passed my test.  3 months ago I was considered the worst of the worst as far as staging my disease.  Level 4 is as far as they go and the median survival rate from there is 8 months.  Our previous stated goal was just to backstage this disease to be able to bring me into a state of surgical candidacy.  I have since learned that the Thoracic surgeons saw my first scan results 3 months ago and stated “absolutely no way…talk to the patient about quality of life as opposed to quantity”.  However, I will say that my radiologist was always optimistic…I really, really like her a lot too…She felt she could beat it down and she certainly did.  It is not unprecedented for patients to go into remission after radiation and chemotherapy treatments.  My oncologist stated that it happens about 20% of the time for this cancer.  I don’t know how many of those people would have been stage 4 at onset of treatments but would imagine that the remission % would be much smaller for those people.  The one thing that my doctor stated that did make me rare in his mind was that not only could they find no trace of the disease but that they also could not see any traces of damage from the radiation treatments that they had given me.  He stated in other remission cases that they always could see this and this was odd to him.  That would indicate to me that my body is strong and has healed well and I would think this bodes well for my future.

This is the map of where we’re going.  It won’t be easy but nothing worth having ever is.  While we are not out of the woods by any means…at least the path we are now traveling does lead us out of the woods as opposed to being a dead end.  I’m up for the challenge and ready to roll.  I’ve never quit anything in my life and don’t plan on starting now.  Irregardless of the outcome, I believe all will be fine.  I will talk to you all soon.

Joel

More details

Hi again –

First of all, thank you for all the phone calls, emails, blog messages, high-fives, hugs……  It is all the love and support we have received from friends and family that has helped us tremendously as we fight this battle.

Though the news from Joel’s PET scan could not have been better, we remain cautiously optimistic as we await the next step of our battle.  In about three months, Joel will have another PET scan done.  Even though his PET scan from Monday did not show any cancer present, there are cancer seedlings that exist.  Modern technology has not discovered a test to show where these seedlings are.  Therefore, we wait the three months to give Joel more time to rest up from the daily radiation treatments and chemotherapy.  It also is an educated guess as far as a time frame goes to see if any of the seedlings grow.  The November PET scan will reveal if cancer has spread to any other areas of Joel’s body.  As long as cancer is not detected elsewhere (such as the lungs or liver), Joel will be scheduled for surgery approximately two weeks later.  So we are hoping that surgery will take place around Thanksgiving, or shortly thereafter.

The surgery will be far from a walk in the park.  The surgeon’s goal will be to remove a portion of Joel’s esophagus, stomach and surrounding affected lymph nodes.  Joel will expect to be hospitalized for seven to ten days, with a recovery period of four to six months.  We are ecstatic to be at this stage, since surgery is the only way to completely remove the cancer and win the battle.

Please continue the wonderful support, thoughts and prayers.  We feel we have aced all the tests we have encountered thus far, but we have many more tests to go.

April

Remission

Hey all. Today is the day we’ve all been waiting on…I can report that it went as well as expected….scratch that…as well as hoped for….I am currently in total remission and the doctors are pleasantly surprised.  I am going to make this blog entry short and sweet.  I wanted to get the information out and spread the good news as I know many are curious, but am having trouble controlling my thoughts and range of emotions as we ride this roller coaster today.  Read it again….Remission…not synonymous with cured but nonetheless, the best technology in the world could find no trace of the cancer as recently as yesterday….We still have a ways to travel before we can say we’ve beat this disease, but today is definitely a step in the right direction.  I will check in soon….Thanks for the thoughts and prayers….they obviously work.

Joel

Quick update

Hi all –

Just a brief update to let you know that Joel had his PET scan this morning.  It went fine and we will know the results tomorrow when we meet with his doctors.  Joel continues to feel well so that should be a good sign!

Thank you for the continuing support and prayers. 

April

Tom Petty was right

When he sang ”the waiting is the hardest part”…I’ve just been hanging out pondering the reality to come next Monday-Tuesday when we return to see the radiology and oncology departments at IU.  Even though I’ll admit that it doesn’t consume all of my time as I truly understand that there isn’t anything that I can do to alter the reality that we’ll face next week, I will say that it is difficult to not let those thoughts creep into my head on occasion.  Somehow, knowing that I can’t change nor affect the outcome of the information that is to be received, while it leaves me feeling powerless in one sense…it really is the only comfort that I take in this waiting period.  I’m cautious not to be too anxious and miss the good times that are staring me directly in the face presently.  During this summer, I have truly enjoyed all of the visits with family and friends.  Not that I didn’t enjoy previous visits, its just the reality that has accompanied me with this illness that has allowed me to appreciate these times to a much larger degree.  Its the difference between catching a whiff of a flower or inhaling deeply into the same bouquet.  The first gives you the same scent but you don’t know what you’ve been missing unless you’ve truly experienced the latter.  Unlike Bill Clinton, I have been inhaling deeply since May 20th and experiencing life on a much different scale than ever before and it’s been pretty great.  Never again will I fail to stop and smell the roses as these are the true experiences worth remembering.  Talk to you soon 

Joel

Gearing up for school again

Hey all…we’ve got the kids back and life is getting back to normal…house is loud as ever and it really is nice as the silence is deafening when they’re gone.  All three kids are excited for the ice cream social tonight and to learn who their teacher will be this year…School starts in two days and it’s time to get back into the swing of having a scheduled routine..ie bedtimes and such…Daylight savings and the eastern time zone are no help in putting kids to bed as it is still light out at 9:30…Since Vincent will be in 1st grade, this marks the first year that April will not have anyone home with her for a full day…the summer seems to have flown by although in reality I always think summers go by too quick as does time in general…hard to believe that Vincent is going into 1st grade as it seems we just brought him home not that long ago…I reckon I’m no different than any other parent as they all seem to grow up rather quick.  Will talk to you soon

Joel