Knotes from the Battlefield

I have safely arrived in Bethesda.  I have my wrist bracelet in place and we are underway!  I have a Room number now.  See below.  The bedside telephone is 301-451-3030.  My cell appears to have very good reception in the room as well.  I have mostly unpacked and am trying to chill out in order to give them a reasonable BP reading.  That is my report for Monday, Jan 5

One snail mail address format (many will work)

Well my bags are packed, I’m ready to go…  I’m leaving on a jet plane, don’t know when I’ll be back again

The next time I fire up a computer machine, I will be in whatever room they assign me on Wing 3NW at the National Cancer Institute.  I have already described the events of the next few days.  Almost like a little respite before the big guns roar to action on Friday.  I truly appreciate the huge outpouring of grace & generosity that has beeen coming from every direction since this all started.  Offers to keep our walks clear of snow this month, gift cards for restaurants after we get back home, transportation needs being met, general “call if you need ANYTHING” offers for Pam.

I have to release the myriad “To Do” lists that remain to God.  I have had “intentions” to complete so many things.  Our life is filled with all sorts of avenues that go in multiple directions, with rabbit trails leading to wormholes.  I sometimes think I can get it all sorted out and fully organized in a matter of a few days.

Wanna know a secret?  I can’t!

But I know the ONE who can!

The Lord Jesus Christ is King of Creation and Supreme Lord. He knows the number of hairs on my head and he has blessed man with the ability to make advancements in medical science.  I am off to play a cameo role in a MIRACLE!

Love to All!

Today we share a real life “Good News / Bad News” situation.  I was in Bethesda last Tuesday, receiving the long awaited news that I had been accepted into the study. Virtually simultaneously, adjusting for the time zone difference, Pam received a phone call from her District Manager notifying her that the company had reached a decision that morning to close her store.

Pam has worked for Waldenbooks since 1980.  Her love for literature as well as her caring attitude for people has led her through almost 3 decades of selling books.  For the past 12+ years she has been at the Regency Mall in Racine as General Manager of their store there.  In the process of ongoing changes in the retail industry, particularly in the area of Internet Sales competition, the Borders Group, Waldenbooks “parent company”, has experienced some devastating financial results.  As a result, many stores & corporate positions were trimmed last year. Now, with the 4th Quarter economic downturn, more cuts were needed in order to make it possible for them to survive long enough for any upturn to occur.  Those cuts affect us directly and personally.  Pam is also concerned for each member of her staff that has been together for so long.

What all this is to say is that on January 30th Pam’s job will cease to exist.  She has carried our health insurance for the past 10 or more years.  I have been on medical leave since September.  I am still in the “waiting period” to qualify for eventual SSDI.  Paperwork for a pension from my previous employer was also submitted in September, but has multiple layers of red tape to clear.  I leave for the hospital in 3 days and will be there at least 3 weeks.  4 days after I get back home on January 26th, we are both unemployed.

First I ask for prayer.  We understand and trust that God is not surprised at this.  He has a plan.  This is a “real life” test of faith.  Ask Him to reveal the details of this plan in His timing.  Second I ask for our “network” of friends, strangers and family to let us know of suitable job openings you may be aware of.  Not neccesarily in the retail field.  We have prayed & considered that this could be a “nudge” in a new direction.  Third I ask for wisdom how to be the Biblical “head of my household” through these next months.  I don’t believe that I should back away from this miraculous opportunity to participate in a medical treatment that has the potential to wipe every trace of cancer from my system.  God has orchestrated every step of the process of being accepted into this clinical study.  I am going to go to Washington DC in three days to prepare to receive my life saving cells on the 16th.  We trust in the Lord to attend to the many background details that are not clear to us today.  The next verse was already shared a few months ago on this website:

King Jehoshaphat cries out to God when facing a mighty army of the enemy in 2 Chronicles 20:12  ”…. We do not know what to do, but our eyes are upon you”

This battle too belongs to God  (20:15)

Lord show us!  We give You the honor & praise today for Your abundant provision tomorrow!

I landed back in cold & windy Milwaukee at 9PM Tuesday evening following two days of tests at the National Cancer Institute.  All systems are “GO!” and I will be heading back next Monday, this time for the “duration”  I have a few more tests Tuesday & Wednesday.  I will receive my central line on Thursday.  Sometime around noon on Friday January 9th I start two days of Chemo #1 (Cyclophosphamide)  Sunday we switch over to 5 days of Chemo #2 (Fludarabine)  These poisons do nothing for the cancer.  They are given to suppress my immune system so the treatment can work without interference from within.  On January 16th I will finally receive my Green Beret, Navy Seal trained killer cells to do battle with anything closely resembling melanoma.  5 days of Interleukin-2 to make things interesting and I am hoping to be released to come home around January 26th.  Lots of followup the first few months, returning for scans & tests every 4 to 6 weeks as progress is monitored.  Dr Udai Kammula is the head research doctor for this particular clinical trial.  I first met him this afternoon.  We had a fascinating discussion about what the theory behind this treatment involves.  I am a pioneer.  The legal documents indicate that they desire to test this treatment on 65 people between now and 2010.  I asked how many were already underway.  I am #1.  The pacesetter!  Some people instill confidence by their words & demeanor.  Dr Kammula is one such individual.  His energy & passion for his work were clearly evident during our conversation.  This is trench warfare.  And our side seems to be developing superior firepower.  Time to take it out to the firing range and confirm the academic theories of the lab.  KABOOM!

I have a bad attitude about this disease and will do a few ancient “Berserker type” war cries (skipping the blue paint & nakedness) as we wage battle on the very cutting edge of medical technology.

You guys can do your part by loudly cheering for the good guys in white hats!

Edits & enhancements to follow!

Kurt

Busy day! Flew halfway across the country, checked into my hotel, caught the shuttle to the NIH and straight into the medical vortex. 9 tubes of blood and a little plastic cup were left behind at Door #1. I then reported to the radiology department and had another needle poke and was given a bottle of barium contrast to chug-a-lug. ONLY ONE! The hospital at home makes you drink TWO! After a brief wait, it was into the scanner. Hold your breath… An injectable contrast was given through the needle, and another pass through the scanner. Again, hold your breath…

Next to the MRI department. The needle was thoughtfully left in my arm for a second use. I am generally ambivalent regarding recycling, but this was a fine decision! Earplugs AND headphones. Buzzzxx, ZAP!!, hammer, siren… I have no clue how those noises become pictures, but they do somehow.

Now I wait, but only for a day.  I am supposed to see the doctor right after lunch Tuesday and hope to know real soon when the actual treatment will occur.  Until that time, keep praying!  Happy New Year to one & all reading this message on the www.  God is in control!

Take everything I wrote in my previous post and make it 2 weeks sooner!  I just received this news from the friendly folks at NIH-

Merry Christmas!  Your cells passed check point #3.  Dr. Kammula thinks your cells may be ready earlier so he wants you come back for clinic earlier.

MRI and CT scans on 12/29 starting at 4pm but have to be here a little earlier for blood work.  Then I would see you in clinic on 12/30 at 1pm.

I will be going to Maryland this coming MONDAY!

Rejoice!!

This morning I wrote the following note to my “research fellow” at the National Cancer Institute-

Like an anxious child waiting for Christmas morning, I have been checking my “inbox” quite often to see if there might be news.  When we were young, we were hoping to find the latest toy or gadget under the tree. All the Atari and Sony and DAK electronic marvels, now long past obsolete.  As we grew older, the concept of “treasuring the simple complexity of craftsmanship” led to gifts of a more artful nature.  Carvings and sculptures, images, both wildly abstract & sharply focused.  Gifts with personal meaning, gifts of time and beauty.

Today I am hoping for something that crosses both ends of this gift spectrum-

That the high tech realm of cloning and immunology might be able to engineer specific cells taken from my blood.  Cells to halt the growth of the melanoma that has entered my system, cells that have the potential to keep me alive.

In the perfect scripted “happily ever after” fairy tale, this news would come on Christmas Eve, delivered by a rotund man in red.  I will be equally thrilled to learn the results of “Checkpoint #2” once known, via an email or cell phone call from the NIH.  Even later today?

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TRUE STORY- Within 10 minutes my cell phone rang.  It was Dr Inchauste!  She had just left a meeting with Dr Kammula. She had NOT read my email at the time of this call…

My cells have passed “Checkpoint #2″.  They face yet one more test that will be completed later this week.  I should hear back regarding that final detail next Monday.

THEN-  I will be returning to Bethesda on January 14 & 15 for CT scans and a MRI of the brain.  After those images are reviewed, we will begin final preparation for the actual treatment!

Praise the Lord!

Here is the email that was sent from the NIH at 9:10 this morning!  

Good news, but with another two week “waiting time”

Hello Mr. Knudtzon,

Greetings from our Nations Capital.  Dr. Kammula just let me know the initial screening has good gp100 clones.  The next step in the process is to grow the gp100 clones in the lab over the next two weeks.  If they grow well the lab will retest them. The cells made it past checkpoint number one.  In about two weeks I will give you an update if they get past check point number 2. 

Hopefully you are staying warm in The Frozen Tundra. 

Dr. Inchauste

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No news yet from NIH.  The testing to verify the genetic marker is supposed to take “two to three” weeks.  December 9th will be 3 weeks since the cell harvest.  I would rather have the test done right than rush and receive a potentially innaccurate result! The waiting is the most difficult aspect of all this.  I can deal with discomfort.  Occasional lapses into fear are normal.  Ignoring it all and hoping it might go away is another common technique. Finding that elusive quality of patience during periods of anticipation is a challenge for someone who is “wired” to fix problems.

Dat’s me folks!

The procedure I had on Tuesday is officially known as a “Cell Harvest”.  I was connected via 2 needles, one in each arm,  to a serum cell separator machine and 20,000cc’s of my blood was passed through the processor.  A small bag, containing about 12 to 16oz of an amber colored liquid, was the result.  That liquid is a concentrated subset of my white blood cells.  They hope to verify reaction of these cells to one of two melanoma antigens, either gp100 or MART-1.  

Based on this reaction, they will process the cells and grow them in the laboratory with a special tumor fighting ability.  The result will be the cells that are ultimately given back to me when they have grown in sufficient numbers. 

Tissue samples from my lung biopsy in July indicate that there is a good possibility that I will be a “match” on the gp100 antigen.  I have been given information on a study that they will be suggesting & discussing with me once the above is all competed up to 40 days from now.  (Early 2009)

NOTE: This may or may not be the treatment that I will ultimately receive, but is the avenue being explored by the doctors right now.

The Study Number is 08-C-0104

The Study Title is “Phase II Study in Patients with Metastatic Melanoma Using a Non-Myeloablative Lymphocyte Depleting Regimen of Chemotherapy Followed by Infusion of gp100 Reactive Perpheral Blood Lymphocytes (PBL) and High Dose or Low Dose Aldesleukin”

Now it is time to take a “break” from cancer and celebrate Thanksgiving.  Pam & I are grateful for the prayers of friends & strangers.  Almost daily we hear encouragement from people across this land.  We are humbled by this outpouring of love.

Thanks be to God!  For the awesome and abundant gift of Eternal Life that You freely offer through Your Son, Jesus Christ!