A Turn

It has been quite a while since my last communication.  But I have not been able to work on the computer at all until today.  That is because of a major turn.  I’ll share the highlights (if they can be called that!)

After the radiation I took a dramatic turn for the worse and was hospitalized.  Blood work showed serious liver blockage that would not allow the liver to do its work.  So a procedure was done to install a stint.  Happily it was a success and the liver is now doing its work.  Good news!

However, on the downside is the bone pain has dramatically increased.  The rest of hospital stay was work to get on top of the pain.  I am now at home because of a portable pump that administers the meds.  I've gotten a lot of relief but it is still a battle.

The doc has determined the chemo drugs will change to address the bone issues.  The main need is to gain strength and weight and begin chemo again.

Well, time for rest.  Thanks again for your prayers and acts of love and help.

Glen

It’s a Pain

I’ve been so impressed with the quality of care – and specifically from the line staff – that I have received every place I’ve gone.  I’ve had multi-CT scans, PET scans, MRIs and now daily radiation.  I really appreciate the professionalism and efficiency I’ve experienced.  Currently that is at Rush University, a large teaching hospital complex close to the Loop, downtown.

I’ve completed 3 of ten radiation treatments, finishing a week from Tuesday.  The procedure itself is quite manageable – the three visits to set it up, not so much.  But now it is a 20 minute in-and-out routine.  Thanks to Adam for driving me nearly every day, what a blessing!

The main purpose of radiation is to reduce the bone tumors’ size and hence the pain produced.  That seems to be happening in the lower back but my hip is very painful yet, now with pain radiating to the knee.  Last night was quite an ordeal as the morphine does not seem able to do much.  I’ll be talking with the doc on Monday to try to understand this more and see if other measures are needed.

I’ve determined that cancer is a lot like trying to repair very old plumbing – complications do easily arise that require significant interventions in all sorts of unexpected arenas. Both are messy and gross, too!  :-) 

So my current prayer request is simple – relief of pain in the hip, knee and leg.

Thanks friends.

Radiation Update

Lonni and I had our radiation consult and here is my layman’s report:

In cases like mine where tumors are numerous it is not practical to treat them all as a course of eradication.  However, treatment can be effective for those tumors that are creating pain.  Therefore, in a few hours I shall return to the scene of the crime to be scanned, measured, aliened and tattooed (honestly) in prep for radiation treatments.

The treatments will be daily but the in and out time of only 20 to 30 minutes, total of 10 sessions in all.  They are optimistic that this will bring pain relief but cannot venture to say to what extent.  There is a standard answer, which I completely understand, to the specificity people like me want: “Well, everyone is different.” – got it – but I still going to ask.

I very much want this procedure ASAP as the situation has made me far too sedentary.  Meds help quite a bit but do not enable me to get around without pain (mainly the hip is a problem.)  

So we shall see and hopefully in 2 or 3 weeks things will be improved.  So to my millions and millions of followers out there  (My dark side wants to be Rush L) – I’ll keep you posted.  So to those who find it tedious to follow along I’ll include pictures – but only if I end up glowing in the dark.

When the radiation is done my chemo treatments will include several more drugs and, as I said before, the doc is optimistic that there will be reduction in tumor size and make this a manageable complication over the long haul.  This cancer springing up in new places is to be expected -- the doc doesn't to say that, but that is kinda my sense.

Thanks for caring!

glen

An Elusive, Complicated Bugger!

In the interest of transparency this edition will share my current struggles and direction as we know it.  The last few weeks have been filled with medical consults and scans.  Cancer is an elusive and complicated bugger that morphs in more ways that Mitt Romney. 

The main issue is the spread to the bones --  the pain the lesions cause and the course of treatment.  This is not the worst pain I’ve experienced (chest surgery and a 6 month battle with mega kidney stone top it), but it is debilitating.  I move like a 100 year old.  So the issue is pain management.  We’ve ratcheted up to a morphine patch that I just put on 12 hours ago and will take another 12 to fully kick in.  I did have a pretty good night last night; slept more that I had in weeks.

Of course, the long term use of morphine is not attractive so, what’s up on the treatment side?  I’m starting two additional drugs.  One is to strengthen the bones because cancers invades and deteriorates them, the other is another chemo drug that will begin after radiation.  I saw a spine and a long bone orthopedic specialist.  Had my vertebrae and/or femur deteriorated and at risk of breakage?  -- Major complications!  If so, surgery with metal implants would be necessary.  So, as has been our experience traversing the dark trails, God’s grace is always active.  I am SOOOOOOOOOOOOO happy to say that in both of those places there is not yet bone deterioration!!  That is a tremendous thing to be thankful for, and we are.

So, nice guys as they are, I was happy to say goodbye to the surgeons.  So now it is hello to the radiation oncologist with a consult next Wed.  With him we will determine how many of these lesions will be zapped with radiation.  Our hopes and prayers are that this treatment will reduce pain and that the new drugs will reduce the cancer tumors.

I continue to be more than pleased with the Block Center.  Such caring and knowledgeable professionals!  Yesterday was chemo day but those are not bleak days – in fact, another evidence of God’s grace is that these chemo days give me an uplift, not a downer.

Along that line my precious family and friends continue to be amazing blessings.  Susan found us a wheel chair to borrow and Sunday afternoon our little brood spent Sunday evening on the Lakefront from the 12 st beach to Millennium Park.  My wife -- she strong like bull!!  That was great fun.  It was great to be mobile but very strange to be in a wheel chair.  Man if I l only had a segway!! :-)   I do like having a handicapped parking permit though!!

You know the old saying, “Be careful what you wish for”?  I was reflecting with a nurse that I battled all my life with weight and often thought, “Man I wish I didn’t have a desire to eat.”  Well that wish came true!  I used to live to eat, now I only eat to live.  It is a chore and such a weird deal not to ever be hungry.   At the worst of my fatness I was 265 lbs years ago.  Yesterday I weighed in at 165.5lbs (40 lbs were intentional, the rest a spinoff of the battle.)  Think about that – I have.  So another prayer request is that I will eat more to get my weight up to 175 – 180.

I’ll finish with telling you of another joy in my life.  Cy (who will be 8 yrs old tomorrow) and I have developed a tradition.  We read a Harry Potter book together and BEFORE we see the movie (currently on book three.)  The reading times (averaging twice daily) are great times for cuddling and fun interaction.  BUT, of course, one thing leads to another so now the birthday Lego requests are HP centered.  Hogworts is not cheap!!

I lied, I’ll really finish with a request: do you know of a mobility scooter hanging around someplace getting dusty?  Circle is such a big facility that in my condition I can no longer transverse.  With a scooter I could get around a lot of it.  I pray this is a temporary condition so I don’t want to buy one, nor can we afford to.  I also figure that there are a lot of these things around.  If you know of a possibility please shoot me an email: glenk@circleurban.org.

Blessings and thanks for the support

glen

A Machine that Cheney Could Love

Well friends, today and yesterday were a day of scans and tests in preparation for next week.  One of those was with my friend and dentist, Mark Jacobs.  One possible (and remote) side effect of a med that I will begin next week can be jaw/gum inflections which can have very serious complications.  I was thankful that I cleared that hurdle but that stinker Mark found a cavity!! (I think there is a big conspiracy "FIND SOMETHING ON KEHREIN")  On Thursday and Friday I had MRI’s on my spin, chest and hips.  I had just watched an interview with Dick Cheney where he defended “enhanced interrogations”.  When I was in the enclosed MRI space for long periods of times I kept thinking – “Dick Cheney would like this machine.”

So now I’m all set for the appointment on Monday with the orthopedic oncologist at Rush University, following that on Wednesday (chemo day) we will begin the new course of treatment.  I’ll post the addition info on Thursday.

So how am I doing?  Yesterday I sat on a bench at Rush watching people bustle by, and thought “I used to able to walk like that.  They don't really know how great it is to do that!!”  So I look forward to getting that ability back and I will have another tremendous praise – walking without pain!!  So if you are having a tough day just think how blessed you  are to get out of a chair and walk/run at will!  That is just one of the many things I’ve taken for granted and now appreciate like never before.  There are many others like when Lonni and I lay in bed together we are so happy to have each other and another day.  I’m taking such pleasure in the fact that Cy is loving his new school – little things now mean so much.  I am so blessed – so are you, I bet J

  

So continue to pray for reduced pain and a good clear path of treatment to address this current challenge.

Thanks my friends.

This PET is not warm and cute.

Doctors have some great lines, like, “Let’s do this test and rule out any problem here.”  The problem with that is, that the results can also “Rule in” a problem.   Ignorance, however, might feel like bliss – its only trouble.

A PET scan works by “lighting up” fast multiplying cells (radioactive particles suspended in glucose are drawn to the tumors.)  The test revealed that the cancer has spread to bones in my spine, ribs and pelvis.  I have also deteriorated physically with pain in those areas, especially my hip.  I’m walking with a cane at times to garner sympathy.  I’m thinking about a tin cup and a cardboard sign – but I’m not pitiful enough yet.

As I’m sure you feel, this was a blow.  Cancer in the bones sounds fatal.  So we’ve (esp me) been very emotional as I look at Cy and my dear, dear wife with the thought of leaving them alone.  It seemed our course of recovery was remarkable and that the trajectory would continue.  This is yet another form of denial – battling cancer is peaks and valleys.  That is just the way it is.

Now you are thinking – where from here?  While we got this news over a week ago I wanted to wait to post until we had a consult with our doc – that happened today.   The week in between  I shared with a number of close friends, family and colleagues only because I wanted to have this confab first and share the course of treatment more broadly.

Actually, the news starts to get better from here forward.  The doc, then the Phys Asst and the RN wanted to assure us that is not fatal news.  This is not an uncommon direction this disease takes and the doc said it does not change his diagnosis that we can get on top and manage this disease for years to come.  As our Jewish friends say, “From your mouth to God’s ears!”

I know it is counter intuitive but the doc would rather see this metastasis (to the bone) than in the soft tissue (that compromises organ function.)

These things were encouraging and helped calm the fears.  It is another battle to be fought in this war, but it is not, apparently, Waterloo.

Beginning next treatment I will be getting a bone strengthening injection to prevent breaking and associated complications.  They also add another colon chemo drug.  I’ve being referred to an orthopedic oncologist at Rush University – one of the top guys in the field – who will help us decide on radiation treatment.  They actually call the tumor zapping  “spot welding”  cuz it not only shrinks the tumor but strengthens the bone.  This is a likely course with my hip.  But I will keep you posted.   Looking forward to increased mobility.

Also counter-intuitive is that it has also been a powerful time of feeling drawn to the comfort and peace of God’s arms in the middle of a lot of tears and fears.  He wants us, not for what we can accomplish, but because his love is so total.  In case you might not have noticed, I am a doer and not much of a mystic.  End of life issues sensitize and heighten our senses.  I am feeling God’s love in new, powerful and peace-creating ways.  Words don’t suffice, but you get the drift.

Thanks for your thoughts, prayers and expressions of love.  I am a blessed man.

Glen

PS: a dear, dear friend gave us four seats behind the visitor’s dugout (5^th row).  It was a beautiful day, perfect setting for Cy’s first Cubs game.  In every way the day was perfect and created precious memories.  Can you believe Cty walked out the park with two balls!!

Like I said, I am a blessed man.  Thank you my brother Jim.

Catching up a Lucky #13

If you are reading this you are indeed a faithful friend, as I am rarely posting these days.  The reason being, things have settled into a boring routine.  This is, of course, good news.  There have been no major turns, no dramatic developments.

As I write I’m in the final hour of my 13^th treatment, with my portable pump slung around my waste.  Since dropping the most toxic drug my energy levels have risen and my mind is clearer.  I’m excited about new developments at our ministry and the role I can yet play and feel energized by it.

You might be surprised to hear that I am working every day, full days.  Yesterday that included an evening meeting until 10pm (Lonni was at my side to monitor, in case you wondered)!   I’m even back to by hobby – a construction/rehab project, this one is a concrete garage slab and patio at our River House I’m getting to on weekends now and then.

How can a guy with stage 4 colon cancer be more blessed than me?!?  Friends tell me I look better than before – this, of course is cuz is down 75lbs!  Hey, if you used to be a medium shirt but are now an XL we ought to do a shirt swap!!  J

Last week I had CT scans and the tumor marker blood test.  I’d love to report that the TM number plunged to normal – but that did not happen.  But it did come down some (114 to 92; normal = 0.)  So, microscopic cancer still exists in my body.  The doc cautions that the TM alone is not definitive.  That brings up the CT scans.  In brief, there is no evidence of new tumor growth but there is a spot on my hip that the radiologist thought needed a closer look.  Late next week I’ll go for a PET scan.  Stay tuned.

My family, particularly my wife, is amazing.  She keeps me on target with diet et al.  She tells me I’m being a good boy; I tell her, and anyone who listens, that she is saving my life!  What a woman!!

Thanks to you all for your encouragement and prayers.  We remain hopeful and diligent in the quest to stay living!!