Busy, busy.

While taking my walk today, I kept thinking about an incident that took place as we were leaving the Duke Cancer Center last Thursday.  I had just finished my 3rd day of chemotherapy and was looking forward, with much anticipation, to getting home and just relaxing for a few days.  We got on the 4th floor elevator with another couple, and got all the way to the 3rd floor before we stopped and the doors opened.  A woman in a wheel chair, probably about my age, came through the doors being pushed by her husband. The elevator was not overly spacious and conditions started getting a little crowded as we all moved back to make room.  She was obviously in the wheelchair for a reason, and though she did seem a bit weak and feeble in some ways, she was also reasonably alert and aware.  She smiled and make a comment about causing everyone else to have to get all squeezed and crunched.  We all tried to reassure her that it was perfectly all right and not to worry about it.  We made it all the way down to the 2nd floor before it was time to stop again and let her off.  As her husband began to pull her out, I think Holly said something like "...and have a nice day".  As she was backing away she looked up with a big smile on her face and said "I will.  I found out I'm going to live."  And the doors closed shut.

Forgetting her husband, the other four people on that elevator were thinking about other things.  Planning their weekend, trying to remember where they had parked the car, wondering whether they had called someone back.  Based on the way in which that woman said those words, I got the distinct impression that, at some point, there had been some serious doubts raised about her longer term prognosis.  And I sensed that she had just, a short time earlier, learned the results of additional tests that removed those doubts.  She was going to live!!  She didn't care where her husband had parked the car - she was going to live!!  She didn't even care if they had a car - she was going to live!!

All of us have our lives to live.  There are many details that we need to plan for and deal with.  We get busy with our families, and our jobs, and our bad hair days, and sometimes we forget about the simple fact that we have been granted more days in our lives.  There is no guarantee that any of us will see the sun rise tomorrow.  So while it is still necessary to pay attention to the many facets of life that pass us by each day, let us not forget to be thankful for just being alive.  That lady in the elevator is undoubtedly having a simply glorious weekend.  Take a moment to sit back, draw in a deep breath, and just think about it.

Drip, drip, drip.

Today I just finished up my third consecutive day of chemotherapy, the usual start to a new treatment cycle.  That involved about 8 total hours hooked up to an IV pump, actually 3 pumps to be precise, and infusing about 2 liters (+/- 2 quarts) of several poisionous chemicals.  Those drugs are designed to kill very active fast growing cells.  Those cells are cancer cells, but they are also include hair and beard type cells so there is some collateral damage, some seen and some unseen.  I sometimes wonder about what might be included in that unseen category, but I don't get too worked up about what I can't see or feel.  I'll just leave that aspect to the Lord, and let Him deal with it.

So that's 8 hours of chair time, plus 3 trips to Duke at 3 hours per trip, an appointment with the doctor, and a few hours in waiting rooms.  That adds up to 3 perfectly good days that could have been spent in far more interesting and pleaurable pursuits.  But we are where we are and we do what we have to do.  Or as they say, we just go with the flow.  The good news is that we now have 11 days with no further medical visits, a vacation of sorts.  So we will rest up from sitting in chairs, and sitting in doctors offices, and sitting in waiting rooms, and we will consider what other pursuits we might undertake to fill all our spare time.  Oh, the stresses and strains of being retired.

And the doctor said...

Our appointment with Dr. Beaven was at 12:00 noon today, but we had to feed the vampires in the lab at 11:00 so we left home at 9:45.  By the time we saw the doctor and completed the treatment, and then drove back home, we arrived at our little castle at 7:30.  A ten hour day.  But we have learned that when we have to head north to Duke, we just block off the whole day to allow for traffic, schedule changes, etc.  However long it may have taken today it was worth it to hear her say that the bone marrow biopsy came back clean and the official PET scan report indicated significant recovery, with the exception of one lymph node.  Good news to be sure. Back when I was diagnosed on June 6th, there was a bone marrow biopsy performed and the results indicated a 30% involvement of the marrow - not good.  But today's results, just 16 weeks later, indicate that the bone marrow is clean, indicating no evidence of cancer.  That is major!!  The PET scan, when compared to the one taken back in late May, shows significant improvement.  It does, however, show that one lymph node in my abdomen has not responded to any noticeable degree.  The doctor said that she sometimes sees this with T-Cell Lymphoma, and if it does not respond after 2 more cycles, we will consider other options.  I asked if that would be radiation and she said that it would most likely involve another chemo drug.  So we just need to concentrate our prayers on that stubborn node.  No need to drag this process out any longer than needed, and that remaining lymph node just has to go.  Our daughter Jill said some time back that in her mind she was picturing all of these little pacman heads scurrying around eating up all of the cancer cells.  Well, we still need some of them continuing their reconnaissance and attack operations, but our main force needs to be squarely focused on that remaining stronghold.  No time now to let down our guard.  We have the enemy on the run, and we're going to beat this.

Praise be to God for His faithfullness and His loving kindness.  He has heard our prayers and answered the petitions of our hearts. Praise His holy name.

Here we go again.

Tomorrow (Tuesday) we have an appointment with Dr. Beaven and will get the "official" results of my testing last Thursday.  At this point we don't have any feed back on the bone marrow biopsy but the preliminary report on the PET scan was favorable, so overall things look encouraging and hearing anything negative will be a great surprise.

Based on what we have heard so far, I expect to leave her office and go down to the treatment center to begin Cycle 3.  That means Tuesday, Wednesday and Thursday will be treatment days and I will get to bring home about 2 more quarts of chemo drugs, all sloshing around together in my bloodstream.  The beginning of Cycle 2, seven weeks ago, was harder on me than usual and I am a bit apprehensive about how I will react this time.  I may have been a little more run down when I started Cycle 2, and that could have contributed to my feeling it more.  But Holly has said recently that I seem to be as good as she has seen me in a while so maybe this time will be better.  Regardless, I don't really have anything to complain about.  My overall reaction to my treatments has been far better than what most people experience.  Just hair loss and some fatigue, and when you compare that to how bad things could be, I am a very blessed man.  But like someone said the other day, no one likes to feel poorly, even if it is just a little poorly, so I am entitled to some apprehension and maybe even a little complaining.  So far my spirits are very good, and I guess I can handle a little worry without going all to pieces.  The first 2 cycles (14 weeks) have gone well and the results have been encouraging, so 2 more cycles shouldn't be too much to handle in the overall scheme of things.  The ultimate goal is to be cancer free, and if the journey to achieve that goal includes a few bumps and bruises, so be it.  Praise the Lord, we're going to beat this.

Especially Heather

I was reading on the Internet today and I came across a blog, written by a young lady named Heather, who I am guessing is somewhere in her late 30's.  A wife and mother, Heather was diagnosed with a malignant brain tumor in 2007.  Her blog was started in 2006 and, though she is now cancer free, she continues with periodic postings.  As I read through Heather's blog, I came across one of her posts that just captivated me.  I have cancer living inside of me right now, and when I read her words, I immediately could relate to how she was feeling when she wrote what follows:

 "You have invaded my body without invitation.  You have robbed me of emotion, energy, and most of all time.  Time with my family.  Time wasted worrying over you and what you will do next, when will you strike next.  Time wasted worrying about the next scan, the next oncology appointment, the next .......  

I will not let you steal my joy and my self confidence (even though you stole my hair).  I will not let you touch my heart.  I will not let you steal the smile from my face or the beat in my step, though it has become weaker over the time I have known you.  You have taken too much from me, so much from me.  You are a shadow in my children's faces, they worry about their mom and it shows.  You are a shadow in my husband's eyes, he wonders how he can live alone, raise three kids alone.  In those quiet moments, when he and I are alone, I see fear in his eyes.  You are a shadow in my parents heart, wondering if/when they will have to bury their only child.

You are a shadow in my heart, whispering in my ear.  "I am still here." and quietly I whisper back "Not for long".  That whisper is getting louder and louder day by day, moment by moment.  And sometime, soon I hope, it will drown out your voice."

Heather is an amazing young lady and she has been through a lot.  But her faith and her strength shine through loud and clear. If you would like to read more of Heather's story, her blog is titled Especially Heather  -  it's not about the hair, it's about the heart and you can read it by clicking here.

Really good progress.

The unofficial report we got today from Dr. Beaven, after completing my testing, was that I am making really good progress. The bone marrow biopsy report won't be available until probably Monday, and the "official" PET scan report has not yet been received, but based on what she had received thus far she said things looked really good.  Since there is still definitive evidence of the cancer on the PET scan, I will probably continue with 2 more cycles of chemotherapy before proceeding to bone marrow transplant.  We will find out for sure next Tuesday.  That means that my last chemo treatment will probably be sometime in the middle of December and what a Christmas present that will be.  I suppose if I was having a bad time with the chemo, and dreading every time I had to get a treatment, the news that I will have 2 more cycles (12 treatments) would not be greeted as welcome news.  But since I am having almost no side effects thus far from the chemo drugs, I did not mind hearing about the additional treatments.  If that will get rid of the remaining cancer cells, lets get on with it.

All the way home, Holly and I kept saying "Praise the Lord.  Praise the Lord."  He is good and has answered our prayers by showing us that the cancer is responding.  To the many prayer warriors out there who have been lifting up both Holly and me, we say thank you.  We so appreciate your faithfulness and ask that you continue to keep us on your prayer lists.  We have made really good progress but we still have a lot of ground to cover before this is over.  But we are standing by our family motto "We're going to beat this".

Based on the good news we received the day could not have gone much better.  But shortly after we arrived at Duke we found there was a scheduling problem and we wound up with some extra time on our hands.  So since it was an absolutely gorgeous day, we took a walk through the Doris Duke Gardens, adjacent to the cancer center.  What a beautiful place and what a lovely start to a marvelous day.

Praise the Lord!!

Anxious times.

The next week will be a very significant period in my battle with Non Hodgkins Lymphoma.  On Thursday of this week I go to Duke for blood tests, a PET scan and a bone marrow biopsy.  The results of those tests will determine whether I continue with more chemotherapy cycles or if I begin preparations for a bone marrow transplant.  I believe it would be safe to say that represents a rather major fork in the road.  But aside from deciding whether I take the right fork or the left fork, it will also represent my first indication of how effective my treatments have been at impacting my cancer.  The tests will be completed on Thursday and I have an appointment with Dr. Beaven on Tuesday to discuss the results.  There is a chance that I may get some of the results before Tuesday, but the official review and the decision on the fork in the road won't happen until Tuesday.

So the 5 days from Thursday until Tuesday will probably seem more like a lifetime.  Has the cancer been profoundly diminished?  Will the bone marrow show no signs of the disease, given that the initial test showed both bone and bone marrow involvement?  Will I be re-staged from Stage 4 down to maybe a 2?  Or will she tell me that there is very little evidence of any improvement?  Do you remember waiting to get your first test back in Chemistry, or in Calculus, or maybe in that extra tough Political Science course?  You were confident that you had done everything you could to prepare for that first test.  Maybe you had even stayed up all night studying.  But until you saw that grade, written on the top of the exam paper or blue book, you just couldn't be sure.  While the stakes between that test and my test this week are quite a bit different, the principal is much the same.

My faith that God is in control is still as strong as ever.  I know that He is aware of the desires of my heart, and hears the many prayers that are lifted to Him on my behalf.  But my mind is still anxious about hearing the final report.  I don't believe that reflects a weakness in my faith.  It simply reflects the fact that I am human.  And in my mind it is OK to be a little anxious about things like this.  The key is not letting it get out of hand and having it begin to consume you.  So I'm going to be a LITTLE nervous until about next Tuesday :-).

A rubber raft.

I have never been much of a reader.  Aside from college text books, you could probably stack all of the books I have read since then on the dash board of your car and still have a clear view to drive.  Holly, on the other hand, has an insatiable appetite for books of all kinds and is never far from her Kindle.  But since I was diagnosed, I have spent a significant amount of time online reading about Non-Hodgkins Lymphoma and searching out blogs written by others going through their own battles with cancer, or survivors who no longer battle the disease but struggle with their thoughts about recurrence.  Since May we have also spent a lot of time sitting in doctors' waiting rooms, and I have actually been reading a hardback book (proof that cancer does cause significant changes in your life).

I am reading a book titled Unbroken by Laura Hillenbrand.  If you enjoy reading and have not read this one, I highly recommend you add it to your list, acknowledging that my recommendation does not come with a lot of credibility.  It is the true story of a WWII air force bombardier, Louis Zamperini, whose plane was shot down over the Pacific in 1943.  Louie and two of his crew mates, Phil and Mac, survived the crash and spent 46 days drifting in a life raft before eventually being rescued.  It is an amazing and captivating story of their determination to survive, and their physical, mental and emotional struggles along the way.  As I sat in my local oncologist's waiting room last week, waiting to get my Neulasta shot, I read a description of these three soldiers, who were probably at about day 30 of their ordeal, and how they were coping, both individually and collectively.  As I read, I was struck by the similarities between their struggles and those of someone faced with a cancer diagnosis, and their subsequent ordeal as they strive to confront and deal with their situation.  The book's author is far more talented than I, in her ability to describe what is going on in the bodies and minds of these young men.  And what follows is an excerpt from her excellent writings:

Given the dismal record of raft-bound men, Mac's despair was reasonable.  What is remarkable is that the two men who shared Mac's plight didn't share his hopelessness.  Though Phil was constantly wondering how long this would go on, it had not yet occurred to him that he might die.  The same was true for Louie.  Though they both knew that they were in an extremely serious situation, they both had the ability to warn fear away from their thoughts, focusing instead on how to survive and reassuring themselves that things would work out.

It remains a mystery why these three young men, veterans of the same training and the same crash, differed so radically in their perceptions of their plight.  Maybe the difference was biological: some men may be wired for optimism, others for doubt.  As a toddler, Louie had leaped from a train and watched it bear his family away, yet had remained cheerfully unconcerned about his safety, suggesting that he may have been born an optimist.  Perhaps the men's histories had given them opposing convictions about their capacity to overcome adversity.

For Phil there was another source of strength, one of which even Louie was unaware.  According to his family, in his quiet, private way, Phil was a deeply religious man, carrying his faith instilled in him by his parents.  "I had told Phil several times before to always do his best as he knew how to do it," Phil's father once wrote, "and when things get beyond his skill and ability to ask the Lord to step in and help out."  Phil never spoke of his faith, but as he sang hymns over the ocean, conjuring up a protective God, perhaps rescue felt closer, despair more distant.

From earliest childhood, Louie had regarded every limitation placed on him as a challenge to his wits, his resourcefulness, and his determination to rebel.  The result had been a mutinous youth.  As maddening as his exploits had been for his parents and his town, Louie's success in carrying them off had given him the conviction that he could think his way around any boundary.  Now, as he was cast into extremity, despair and death became the focus of his defiance.  The same attributes that had made him the boy terror of Torrance were keeping him alive in the greatest struggle of his life.

Though all three men faced the same hardship, their differing perceptions of it appeared to be shaping their fates.  Louie and Phil's hope displaced their fear and inspired them to work toward their survival, and each success renewed their physical and emotional vigor.  Mac's resignation seemed to paralyze him, and the less he participated in their efforts to survive, the more he slipped.  Though he did the least, as the days passed, it was he who faded the most.  Louie and Phil's optimism, and Mac's hopelessness, were becoming self-fulfilling.

Much like Louie and his two comrades, we are all faced at times with uncertain and sometimes perilous journeys.  And almost always these journeys involve some members of our family and/or our circle of friends, so our little rubber raft may include several other passengers.  Each of us will weather the storms and turmoil in our own unique and individual way.  No two of us will respond in quite the same manner.  Some will be strong and resilient while others will require more care and support.  As I read the above account, I couldn't help but see a parallel to my own unwanted voyage on the sea of lymphoma.  Louie and Phil had the attitude and outlook of survivors and I hope to emulate them as my journey continues to unfold.

My diagnosis.

For some time now I have been thinking that I needed to do a post on how I found out that I had cancer in the first place.  As I read through many other blogs, written by cancer patients or survivors, they almost all start off by saying that they found a lump in their breast, or had a swollen lymph node in their neck, or had pain here or there, or bad headaches, or some other type of symptom that led them to go see their doctor.  In my case there was nothing.  Absolutely nothing.  I was feeling as "normal" as ever.  But God, in His infinite wisdom, knew that it was time for me to get my unknown problem identified and dealt with.

Keeping in mind that I was diagnosed June 6th, Holly and I had spent much of April and early May with our daughter and her family in western North Carolina.  Jill was expecting her third child, and with very active 2 and 5 year boys already around the house, we figured she could use the help getting ready for the delivery and for a week or two after the baby came home.  All went according to plan.  We returned home on May 5th and began settling back into our routine at home.  The next morning I got up and took a shower and Holly started some ironing.  After my shower I sat down in a chair and started talking to her, but she noticed I was acting strangely.  There was a period of about an hour there where I don't really have any recall of what was said or what I did.  So how does all of this relate to my cancer diagnosis?  It was just God tapping me on the shoulder.

Being somewhat concerned about the possibility that I had experienced a stroke, we went to the emergency room for a checkup.  After answering a seemingly endless list of questions, I began getting various tests - CAT scans, MRI's, ultrasounds of my neck and chest x-rays.  Knowing that they were looking for any evidence of possible damage in my brain, I was a bit puzzled by the chest x-ray.  In fact the first x-ray was not quite right so they had to take another one.  The tests were then followed by a long period of waiting, while the results were evaluated.  Finally, the doctor came in and indicated that they could find no evidence of any type of stroke or brain damage, and indicated that I could have experienced a TIA (Transient Ischemic Attack) or mini stroke.  I needed to check with my family doctor to discuss this further.  And, OH BY THE WAY, the chest x-ray showed some evidence of enlarged lymph nodes in my chest/abdomen so they sent me back for still another test, a full chest and abdominal CAT scan.  Then more waiting until the doctor returned and confirmed there was evidence of enlarged lymph nodes and that I needed to followup with my family doctor.  Tap tap.

Two days later my family doctor referred me to a neurologist for further TIA evaluation, and also scheduled me for a full body PET scan and an appointment with an oncologist.  After further tests and studies, the neurologist indicated he could find no evidence of any brain or circulatory abnormalities, nor any evidence of brain damage.  He said that no further followup was needed and that I should call him if I ever experienced any future problems.  So the reason that I went to the hospital in the first place was totally unexplainable.  But, OH BY THE WAY, look what else we found.  Tap tap.

The PET scan showed an enlarged lymph node in my neck, so it was decided that would be the source for the biopsy.  After the biopsy was taken, but before the results were available, my local oncologist indicated that he suspected that the results would show some type of early stage non aggressive low grade lymphoma, which would be easily treatable.  His reasoning: I was totally asymptomatic, not showing any signs or symptoms of any type of cancer.  You can imagine how surprised we all were when the diagnosis indicated stage 4 (very advanced) Non-Hodgkins Peripheral T-Cell Lymphoma, a very aggressive and rare form of cancer.  It was the fact that it is so rare (only 340 cases reported world wide in 2011) that caused us to pursue treatment at Duke as part of a clinical trial.  How we wound up at Duke with Dr. Beaven is still another story about God's guiding hand.

Some might say that the whole episode that led to my diagnosis is just coincidence.  I choose to view it as just another example of how God can and will guide and direct our steps and the events that surround our everyday lives.  He is not a distant God, sitting way up in heaven looking down at us like a spectator at a football game.  Rather, He is actively involved in every aspect of our comings and our goings and has a perfect plan for each of us.  We may not understand the how's and the why's, but all He asks is that we trust Him and surrender to His will.  It is my sincere belief that if God had not sent us to the emergency room that morning, and my very aggressive cancer had stayed undetected, it would not have been found until it was so far advanced that any treatment would have been pointless.

PRAISE GOD!

Bye bye beard.

Back in the middle of July, after the first 4 or 5 chemo treatments, I began to lose some of my hair and my beard started to thin. Since I didn't have a lot of hair to start with, I didn't view this development as being all that significant.  But then it stopped about as fast as it started.  I figured that if I lost half my hair towards the end of Cycle 1, it was reasonable to expect that the other half would probably disappear sometime during Cycle 2.  Well I was partially right.  About 10 days ago I noticed that I was starting to shed more hair and my beard was getting even thinner.  I had been pretty much shaving my head after the first phase but the beard was just trimmed short.  Then the beard finally reached the point where it got so thin that it started looking scraggly, so out came the razor and shave cream.  Now there is just a little stubble on both my head and my chin.

 The shaver.

The shaved.

Maybe I should see if I can find a nice wig to wear, with a beard attached that would hang down around my jaw.  Sounds scary doesn't it.  Maybe I will just stick with the close shaved look.

Bye bye beach.

Yesterday morning we had to get up early to leave Emerald Isle and drive up to Duke for another treatment.  It seems like no matter where we are we need to drive to Duke for something, and the beach was no exception.  It was sad having to leave the beach and our family but 4 days of fun in the ocean and eating lots of fresh seafood gave us some memories that we can take home with us.

Emerald Isle at sunset.

The appointment at Duke was my last treatment for Cycle 2.  I now have 2 weeks off and then return to Duke again on Sept 20 for some testing; bloodwork, a PET scan and a bone marrow biopsy.  Then on Sept 25 we have an appointment to see the doctor and review the test results, which will determine whether we continue with more treatment cycles or proceed with preparing for a bone marrow transplant.  My gut feeling is that we will find there has been good progress in treating and reducing the cancer but more treatment time is needed, so we will start Cycle 3 and check back with more tests later on.  But maybe that feeling in my gut is just yesterday's chemo doing it's thing.  One suprise from yesterday's visit was the finding that my blood is quite thin.  I have taken coumadin, a blood thinner, for years and never had any real problems maintaining a proper clotting level.  But all of a sudden it has spiked way up, most likely the interaction with another drug I have started taking as part of my treatments. So the next few weeks will be spent trying to get things stabalized and back to normal.  My regular family doctor said I was not allowed to ride my skateboard for the next 3 weeks.  Bummer.

Beautiful morning.

I woke up this morning and looked out at the Atlantic ocean, the waves washing up on shore with that wonderful crashing sound and the sea gulls soaring above the blue seas looking for some breakfast.   We are at Emerald Isle on the North Carolina coast.  Our daughter Jill and her family rented an ocean front condo for 4 days and asked us to join them, and we just couldn't disappoint the grandkids now could we.  The sunset last night was absolutely gorgeous, with an orange moon sitting high above the deep blue waters, against a fading pale blue sky.  Holly and I took a walk along the beach and marveled at all of God's beauty and grandeur.  Today should be lots of fun looking for shells, swimming and building sand castles.  I still don't do very well in the heat of the day and will probably stay indoors with the 4 month old, but everyone else will surely get lots more sun and sand today.  I was reading a blog the other day and the writer said "I truly believe that life is a gift.  As cancer survivors and patients we simply see it more clearly than many others".  Well said.

Emerald Isle at sunrise.