75 Pills a Day!

Four days since chemo and I decided to preserve energy and not go to church.  Lonni and Cy are in Northern Wisconsin with all those obnoxious Packer fans.  Looks like a winter storm will hold them another day.  It is hard to imagine a better wife and son than those two.

I’m often asked about side effects so here is the current update: cold reaction up quite a bit.  This means when I touch something cold or even room temp water or metal, my fingers and toes (cold floor) go numb and all tinglely.  However, this is a temporary condition that is manageable.  Weakness is clearly a side effect and we have timed the chemo to give me the weekend to recover.  On Monday I’ll work from home and hope to be in the swing of things by Tuesday.  Then the following week should be fine.  I have had zero nausea – is that not terrific?!  Another reason not to go to church is that chemo knocks down the white blood cells and hence my immune system is compromised.  Catching a cold that could get worse could be quite serious, so an ounce of prevention…  I am so happy to have been resistant so far.  My blood counts were very good prior to the last round.  My prayer is that this kind of cycle could be typical.  My only significant issue at this point is my appetite.  I simply do not have one.  I am never hungry and must force myself to eat.  When 50 lbs overweight this is the kind of thing I wished for.  As they say, be careful what you wish for.

When first looking into a course of treatment, I was glad to hear that the Block Center ‘s  methods were designed to reduce side effects; it was good news, but I wasn’t sure how much to believe.  I am becoming a believer and if things continue like this I’ll be so grateful.   Thanks for all your prayers, some friends have told me that they are praying specially against the side effects.  Thanks.

People marvel when they hear that I now take about 75 pills and capsules a day.  Ten are medications but the remainder are supplements.   What are they for?, is the next question.   My goal is to starve the cancer of nutrition while at the same time hitting it with the chemo to knock down (out) all the cancer cells.  Third,  feeding the body what it needs to prevent the cancer’s resurgence.  So the food I don’t eat, plus the food I do eat, plus the nutrient supplements is the formula.  Simple to say, harder to do.  Funny isn’t it that the thing that used to be the hardest – stay away from food, is now the easiest (could go from rise to rest without eating).  So eating right is a challenge – particularly not wasting away from lack of protein.  I continue to lose weight slowly.  Another funny reversal: in 62 years of living I’ve never before stepped on a scale wishing the weight to be up!    Never!!  This has been an effective weight loss plan.  Though, I would recommend eating right and exercising -- just as effective, a lot less bother.  Given my previous state of denial I wouldn’t have been reading this blog if a friend was writing it.  So, therefore, I am writing it, and in my ear I hear the voice of my dearly departed mother, “Well let that be a lesson to you.”  Yes Mom, it certainly is!  The lesson of a life-time, one could say.

So what are all those supplements, anyway?

Some replace what my diet limits.  I don’t eat dairy and meat because those fats feed cancer.  But the body needs fat but cancer loves bad fat (Omega 6).  So eight (the biggest 8) are omega 3 fish oil capsules. Inflammation aids cancer; some of my supplements are anti-inflammatory and also are antioxidants that fight damage to our cells caused by free radicals, others strength the body against fatigue and exhaustion, vitamin C & D are critical, (I was very low in both), others provide the essential daily nutrients needed for optimal health and aid immune support, others (probiotics) aid the digestive system – a big issue for me since surgery.

Anyway, it goes on and on and this is the simplest, most basic explanation – doesn’t rate high enough to call it a primer.  If you have reasons to do serious research I recommend Dr, Block's book, "Life over Cancer".  There are many others that address this topic in depth.

Well, I’m going to close cuz I have not taken my morning supplements – yum, yum.  Got to get crackin.

(I posted yesterday as well, including an upbeat story.)

Return on Investment

The feedback I get encourages thanks me for the positive nature of my reflections.  We all know of the value of being positive, but it is hard to "gen up", if it is not there.  I am so grateful to have so much to be positive about.  Having a potential fatal disease has brought many friends to my door who have said very kind and thankful things to Lonni and I.  These are the kinds of things usually reserved for the funeral service.

My cousin, Sheryl Marshall has battled illness her entire adult life with very little relief.  Her struggles have made her a very good reflective writer/reader.  She shared the following story with me that has take-aways for us all.   Out of his pain and struggle this author found a simple way to turn it around with gratitude:

I (Sheryl) am currently reading a wonderful book called "365 thank yous: The Year a Simple Act of Daily Gratitude Changed My Life" by John Kralik.  This guy is age 53 and his life is falling apart. Book Jacket blurb..."One recent December (2007), at age 53, J. K. found his life at a terrible, frightening low: his small law firm was failing: he was struggling through a painful second divorce: he had grown distant from his two older children and was afraid he might lose contact with his young daughter; he was living in a tiny apartment where he froze in the winter and baked in the summer; he was 40 pounds overweight: his girlfriend had just broken up with him; and overall, his dearest life dreams seemed to have slipped beyond his reach.  Then, during a desperate hike on New Year's Day, John was struck by the belief that his life might become at least tolerable if, instead of focusing on what he didn't have, he could find some way to be grateful for what he had.  Inspired by a beautiful, simple note his ex-girlfriend had sent to thank him for his Christmas gift, John imagined that he might find a way to feel grateful by writing thank-you notes.  He set the goal-come what may-of writing 365 thank-you notes in the coming year.  One by one, day after day, he began to hand write thank yous for gifts or kindnesses he'd received from loved ones and coworkers, from past business associates and current foes,from college friends and doctors and store clerks and handymen and neighbors and anyone, really, absolutely anyone, who'd done him a good turn, however, large or small.  Immediately after he'd sent his very first notes, significant and surprising benefits began to come John's way-financial gain, true friendship, weight loss and inner peace.  While John wrote his notes, the economy collapsed, the bank across the street from his office failed, but thank-notes by thank-you note, John's whole life turned around.  365 Thank Yous is a rare memoir: its touching, immediately accessible message -and benefits-come to readers from the plainspoken storytelling of an ordinary man. Kralik sets a believable, doable example of how to live a miraculously good life. End of blurb.  I have only read a quarter of the book but I am hooked.  I do see on jacket that...in 2009, he was appointed a judge of the Los Angeles Superior Court. SO...draw your own conclusions.

Round #3 and reflections on the dark valley

It’s 5am Thursday as I begin this.  My Chemo buddy pump hugs me on my left side, tethered by an IV tube to my chest.  The Block Center uses a delivery method called chrono-modulated.  Developed in France it uses the capacity of computer/pump to time the delivery of the chemo drugs.  They have found this to significantly reduce side effects.  Standard treatment would be to turn the pump on and it pumps a regular dose for 46 hours.  C-M method puts the pump to work at 10pm and takes advantage of the body at rest.  It even changes dosage through the night based upon sleep cycles, shuts down at 10am Thursday, back to work at 10pm then done by about 10am Friday.  Lonni will do the disconnect at home and then give me my standard $5000 shot (price is up)!

This is one of the approaches the BC uses in their very deliberate efforts to limit side effects.  Do these efforts work?  The antidotal reports from the other patients who have taken chemo elsewhere seem to clearly say yes.  Given this is my first experience; I have no comparison base personally.

This treatment trip my good friend, Jim Hallene, replaced my best friend, Lonni, as my driver and companion.  I've known Jim for years and we both are part of the Chicago Fellowship, a group of Christ-followers journeying together to include regular Friday am bible studies, trips to Honduras for work times at several orphanages, breaking bread, accountability, etc.  The group has fed my soul and blessed my life and ministry.

Jim has been a blessing in my life, but particularly now.  I don’t think he would mind if I share this email he sent me after I had received the diagnosis:

Glen:  You have been in my prayers a lot over the past years and daily over the last month.   I pray that the God of Comfort gives you comfort like you have never experienced before; that the God of Peace gives you His peace that passes any understanding you can fathom, and the God of Healing heals your body, mind and soul.

In 1992, my dad had an attack in his office.  He was rushed to the hospital and told he had stage 4 sarcoma of the kidney.  The doctors told us he had six months to live.  Well, almost 13 years later as he was in his final stages, he said cancer was the best thing that had ever happened to him...and he meant it.   He said he would not trade the spiritual truths he learned or the tangible examples of body of Christ in action.

Glen, you are starting a journey that I so very much want to be a part of with you.   I would love to come and see you when you have time.   I wish I could be at Fellowship with you tomorrow but I am traveling. Please know that I will be praying for you during your talk.

I love you, Brother Glen.  You are a more of a blessing than you will ever know!

Jim

I am beginning to understand the mystery in Jim’s Dad statement about cancer.  There is a “gift side” to affliction that one can receive no other way.  I’m sure many of you have experienced something similar, and we say things like, “I would never want to go through it again but I … (fill in the blank.)

For instance, and Jim/Lonni would amen this enthusiastically, it is an amazing thing to spend these Wednesdays in the company of people so committed to healing – while fighting against such long odds.  They simply do not submit to statistical diagnosis.  And often this hope shows much better results.  Everyone believes in the body’s ability of heal – not just "extend life" and hang on for a few more years or months.  If the goal is healing, then hope is promoted and we believe it is possible.  (I told Mrs. Block -- "You guys traffic in hope")  We believe it is again possible to dream of graduations and weddings for grandchildren, growing older with my life-long love, etc.  These dreams the dark early days of diagnosis stole away.  Those long hospital nights post surgery are fearful and very, very lonely.  The valley of the shadow of death… whew, well said a long time ago.

So there you have my low point!  And since then I’ve seen God’s grace woven throughout this journey in so many amazing ways.  Here is one:

As I said earlier our little guy, Cy 7yrs, was taking this hard.  He has lost five family members in four years.  He was in his own valley of death as he feared I would not come home from the hospital.  The glow on his face, the hugs and kisses when I did emerge, was a priceless gift.  But I was weak and fragile – hugs and touches were very light.  Ah, but the marvel of the healing body.  This Monday night when I put Cy to bed (a lengthy routine) he asked – “can we wrestle?” (a long established and beloved routine – and extended tickle match really – that had been suspended.)  My knee-jerk response was, “no, I’m not…”, then I stopped and took stock – “Yes we can, I’m recovered from surgery”, immediately going in for a fast take-down, tickle tackle and quick pin.  I cannot begin to describe the happiness, belly laughter and complete joy that emanated from that boy!  It is priceless.  Downstairs I told Lonni and she recounted Cy's prayer from the night before: "And God I pray that Daddy would get better so we could do the things we used to do."  My goodness, was God on time?  Did his spirit interrupt me and whisper (Yes you can!)   It is a gift I will treasure as long as my memory endures – how does it get better than that?  But, remember, is was a special gift that only affliction produced.

Well life is stirring around here and I will soon take Cy to school – back to Thursday routines!! Yay!  Chemo buddy and all.  I hope to post soon again to talk about the chemo day and integrative care as I am experiencing.

Blessings my faithful friends and family.

Round # 2 in the Books

Round two is complete, and Lonni is now trained to perform removals from this point forward.   It is a bit of a process to include giving me the shot that costs $4k!  She did it like a pro!  What this means is that we will not need to make a second trip up to the BC every two weeks.  It also means that I we be able to attend my beloved group, the Chicago Fellowship on Friday mornings.  It will save us the 3 hours in traffic, gas and give us a day back.

The only thing is, we will miss the time at BC!

This visit included a cooking class that Lonni attended while I got a massage!  It was my first one ever – boy what I have been missing!  My shoulders were quite tight and I had a knot in my back.  All that dissipated.  Really nice.  I hope to do this each infusion.  (now don’t be jealous!)

Lonni & I also had some long talks with the medical team -- the oncologist and the medical assistant.  We got educated on how we will be judging progress and effectiveness of the treatment (through blood work and scans.)  Every three months or so will be blood work and scans.  I’m sure this is very familiar for any of you that have gone this route yourself or with loved ones.

I didn’t have much time to chat with others at the BC but Lonni and I did meet a young women who had been treated at Mayo and is now at the BC.  I think everyone we have met so far comes to BC after a round or two or more elsewhere.  She talked of how stronger she is this time around.  Before she couldn’t walk three stairs without a rest and now her friends tell her that she is more healthy than they!  (She has, of course, embraced the whole diet and nutrition program.)  It is obvious that the effort the BC puts into reducing side effects pays off.

I went for both a CT scan and MRI to establish a post surgical baseline.  I had been wondering what was going on inside since the surgeon looked it all over and said that he could see no remaining tumors or lesions.  (Spreading to the liver and lungs is the malignancy pathway.)  The other concern is the abdomen wall where the surgeon was not able to get “clean margins”  -- and, of course, any reoccurrence on the bowel.  Finally, the lymph nodes (32 or 37 removed showed cancer.)  I’m so thankful to report that the abdomen seems clear – liver, bowel, etc. at this point.  There is some enlargement of several lymph nodes.  So those become points to watch.So in three months we will check in again and look for changes.

Side Effects?  Still quite manageable – I am so fortunate.  I was pretty wiped yesterday after a very rough bought with constipation (I’ve got to figure out how to combat the meds that cause this).  But this morning, Sunday, I feel stronger and plan to attend church – another place I get a lot of love.  I'll probably sleep through much of the Super Bowl!

Lonni continues to be amazing and is really taking to this healthy shopping and cooking.  It is amazing the healthy and creative alternatives are out there.  But I can’t imagine doing this whole routine without her help and support.  I am a very blessed man.

Cy is doing well and has not had any dark expressions.  Thanks for praying for him.

Continue to pray for my immune system in these compromised states after chemo.  An infection can be life threatening.

(PS I exercised every day this week -- did you?)

Another Terrific Chemo Day ( #2 of 12 more or less)

Tuesday at 3 pm, all three of us, (to include Cy) crowded into our old faithful 4 wheel drive Ford Ranger pickup just after the storm began in earnest.  We prayed for a successful trip north anticipating an adventure.  Cy’s school was due to close the next day so it presented a great opportunity to introduce Cy to what Daddy was doing every two weeks.  We were driving up the night before to stay over close by.  Four hours through the blizzard including a supper stop and we were thrilled to settle in and watch the blizzard blow.

The day before we had secured a commitment that the BC would be open, two other patients did the same.  They had a skeletal medical crew to serve the three patients that did not want to get knocked off schedule – one walked a mile and half to the el train and the other is from the east coast.

We had the run of the place!  It was terrific time for Cy because there were so few – and not the usual number of those that are and look very sick.

Now here is something that you aren’t going to find in traditional treatment:  I walk down the hall to the kitchen and smell food – what is this?  Jackie, dietitian director (5 dietitians on staff) came in on her own – didn’t need to – but she wanted to cook for the patients and staff cuz she knew no restaurants were open!

Another person joining us for her very first day at work was the new Oncologist, Dr. Thomas.  Without the normal patient load we sat and talked along with Sheila, another patient, around the kitchen table.  Are you starting to get the feeling that the BC is like a big family?  I am asking the Doc (who is Indian) about eastern vs western medicine and integrative care, and particularly why is it that traditional medicine is so resistant to alternative (i.e. diet and nutrition, etc.).  Before she says much Sheila jumps in.  She is a fountain of knowledge and I am saying to myself, “This is one heck of a knowledgeable patient.”  At one point she slips in “I do research.”  Turns out she is a PhD and the Research Director of Judith Nan Joy Integrative Medicine Initiative, Children's Memorial Hospital in Chicago.

The thread of God’s grace runs continually through all of life --  the ups and the downs -- and it shows itself like this: a casual, extended conversation with two brilliant people – that would never have happened without the snow storm (when does an on-duty Doc have an hour + just to chat?)  BTW many of you know I had the painting “forgiveness” tattooed upon my inner left forward running from wrist to elbow bend such as Nate had.  I did this in memory of my son (see www. http://circleurban.org/newsletters/Eulogy-web.pdf if you want the full story from the eulogy I wrote a delivered.)  I have a lot of blood taken and my left arm has got the good accessible veins.  Almost everyone is struck by the tat.  Same around the table.  Shelia (father was Chinese doc) expressed herself like Gandi:  I would like Christianity except for the Christians!  From innuendos and classic Asian indirectness I am guess that the oncologist is a believer.  Opened some great talk.

So, once again the time flew by with numerous great conversations and interactions.  This is such a place of peace!

 When we headed home and hit the main streets and expressways they were open.  We wondered if our alley would be passable.  Not to worry.  Our long held friends Nita and Jon Beran joined by neighbors gathered together to help each other and us, shoveling it to an acceptable condition.  We drove right in!  What a blessing!!  Andre Hinton our faithful house sitter shoveled the front walks – wow.  Nita (a nurse practitioner) was one half of the founder staff team of Circle Christian Health Center and Jon has been a MD with Circle Family Health Care Network (current name) since 1978.  Jon delivered our son Nathan in the height of the blizzard of 1979.  But will all the medical love and care over the years – to include many visits to our home – this house call set all records!!  I’m just glad they didn’t have a heart attack!!  “You are old people!”  I jokingly reminded them.  BTW JB and Nita are also Cy’s surrogate grandparents.  He and us are lovin' it. 

Chemo creates a reaction to cold so I was a bit worried, yet with the way cleared I could zoom right into our attached garage and carry in all our stuff right into our warm house.

What a blessing to have such friends!  And so many more.  Others will be taking me to treatment and relieving Lonni of that all day burden.

What about side effects?

I’m picking up the writing of this Thursday morning.  Going through the morning routine reminds me that I’m on Chemo.  My hands and feet can take NO COLD, even a glass of tap water.  If I forget and reach into the refrig to remove a jar the reaction is like grabbing a plate you did not know was hot.  It is likened to the instant tingling of when your foot falls asleep with heat-type burning and loss of feeling.  The cold floor does the same to my feet – slippers are an easy fix.

I awoke with a scratchy/hoarse throat.  If we talk I will sound weak, I have not experienced a lot of fatigue yet.  Yet it is early.  We will see, especially over the week end.

Time for Feedback

Okay now I’d like you to weigh in and give me feed back.  Do you want me to blog more about the nutrition piece of my treatment?  Like why isn’t taking 70 pills a day just nuts!?  Only weird people do that.  Glen, are you so desperate to live that you have weirded out on us?  Glen and health-food-nut don’t go together.  Ya you was fat but a comfortable fat, you make me look skinny, now you make me look fat, Glen and the way you are eating you will stay that way!  Besides how the heck can you have a Super Bowl Party with tofu and seaweed.  That is un-American! – and weird.  So will you ever return to normalcy?  You are making me feel guilty for eating my potatoe chips, they taste good, I feel like a better American with a bag of chips and a coke.  The big question: What makes you think all this hocus pocus will work?

This would have been my reaction if a friend of mine got cancer and went down this path, so it might be yours.  So I’d like feedback on whether I should explain this more.  On the serious side, will all have friends and family that get cancer.  Should I use my experience to describe how this skeptic is becoming a true believer and why?  Or will that turn your interest away?  BTW I mean to do this occasionally especially howthe dots connect for me.

You can use the comment feature if you want your comments public or you can mail me:  glenk@circleurban.org

Be Blessed, I sure am,

glen