Monday, April 28, 2014

Chemotherapy Side Effects

This week I have finally realized simultaneously, several of the common side effects of the Vidaza injections that have invaded my body over the past three months. Frequent dizziness, blurred vision, loss of appetite, sleeplessness, extreme fatigue, memory loss and even some hair loss is happening, now. Some of these have been there all along but this has been a more difficult week compared to previously. A good way to look at it may be that something must be working for me to feel this way. The chemo has to be working if almost all known side effects are happening. This is certainly not a medical opinion but just my way of hoping.

My body also looks and feels like a pin cushion but with bruises and knots at many of the injection sites. That's 42 injections plus 1 injection with a broken syringe on Easter. Additionally, five blood tests were taken in the JOA clinic, two while in the hospital and the infusion of two units of Red blood cells, later the infusion of platelets. That's about 50 points of needle injections that at one time or the other have been very irritating. Probably the insertion of a big needle in my lower back/hip for the bone marrow aspiration and biopsy would have been the most painful had it not been for the excellent anesthesia I received. Once that wore off it was felt even now. If you didn't already know this about me, I don't do pain well.

On this 1st Sunday after Easter while I sit here struggling to type this, I'm reminded of my favorite Resurrection story in the Gospels. The Road to Emmaus story in Luke, like all the gospel accounts, tells not of the actual resurrection but of the witness to Christ appearing to his disciples, post resurrection. I'd guess the majority of the sermons preached on Easter Sunday use the stories from Matthew, Mark or John and the Road to Emmaus gets pushed back to the Sunday's after Easter. However, it remains for me the most appropriate one for us in the present time to hear and reflect upon. Frederick Buechner's sermon based on this text in his book, The Magnificent Defeat reminds us that  Christ appears to us within life's day to day struggles. 
"So for at least some of the followers of Jesus, maybe the worst day was the third one, Sunday, which for the Jews was like our Monday, with everything around them returning so completely to normal that it was impossible to believe that either his life or his death was going to make any difference to the world at all. When they were suddenly afraid that the whole business of his life had not really added up to much. He had made great promises and great claims, and a number of people had placed all their greatest hopes in him. But now he was dead. Of course there were rumors about the tomb's being empty. The women had come back just after sunrise full of wild stories. But rumors are only rumors, women are always telling wild stories, and for at least two of the people who had followed him, there was nothing left to do that Sunday but get out of town. And where did they go? They went to Emmaus. And where was Emmaus and why did they go there? It was no place in particular really, and the only reason that they went there was that it was some seven miles distant from a situation that had become unbearable. Do you understand what I mean when I say that there is not one of us who has not gone to Emmaus with them? Emmaus can be a trip to the movies just for the sake of seeing a movie or to a cocktail party just for the sake of the cocktails. Emmaus may be buying a new suit or a new car or smoking more cigarettes than you really want, or reading a second rate novel or even writing one. Emmaus may be going to church on Sunday. Emmaus is whatever we do or wherever we go to make ourselves forget that the world holds nothing sacred: that even the wisest and bravest and loveliest decay and die; that even the noblest ideas that men have had— ideas about love and freedom and justice—have always in time been twisted out of shape by selfish men for selfish ends. Emmaus is where we go, where these two went, to try to forget about Jesus and the great failure of his life.
It is a strange story. All the stories about how Jesus appeared to people after his death are strange, and the strangest thing about them is how unglamorous they are, how little fanfare there is about them. If you or I had written them, it would have been hard to resist giving them a little more drama. In the stories about how he was born, there is a whole choir of angels singing "Glory to God in the highest" and kings arriving from the East with precious gifts; the shepherds coming in out of the night to kneel at the manger; and the star. But here, for instance, all we have are two men walking along a dusty road to a town that nobody had heard of much, suddenly aware of footsteps approaching them from behind and being joined then by a stranger who was Jesus but whom they did not even recognize, perhaps because even when he was alive they had never really recognized him, had seen him not as he actually was but only as they had wanted him to be: a hero who would give them a lot of easy answers to all of life's hardest questions, questions about love and pain and goodness and death. So they were joined by this Jesus, whom they did not recognize, and when they reached the village of Emmaus, and because it was getting late, they persuaded him to stop and have supper with them. And it was only then, only as he took the bread and blessed it and broke it, that they knew who he was. And no sooner did they know who he was than he vanished from their sight. Much as they would have given to have had him stay there a minute or two more, they could not make him stay. They could not nail him down. And that is how it always is. We can never nail him down, not even if the nails we use are real ones and the thing we nail him to is a cross. He comes suddenly, out of nowhere, like the first clear light of the sun after a thunderstorm or maybe like the thunder itself; and maybe we recognize him, and maybe we do not, and our lives are never the same again either because we did not recognize him or because we did."
 So on this second week after Easter and second week after my treatments may I recognize him in the witness of the many who give us their abundant love and care.

Friday, April 25, 2014

Random Thoughts

  • This has been the most difficult few days post treatment as far as how I have felt and taking me far longer to rebound. Fatigue continues to be my biggest issue.
  • Yesterday afternoon I watched Janine mow, edge and weed eat the entire yard, front and back. Now that was a humbling experience. She has always been a "yard" girl for as long as I have known her, so it's no big deal for her to mow the lawn. In fact, some would say that's why I married her. For the record, we had no yard when we got married. For her to do the edging and weed eating is a stretch. She hates doing that, so I am the one who handled stuff she hates. That is why she married me. Janine is also hard on equipment, though. She can go through more lawn mowers than a yard service, but who'se complaining? Like I said, it's humbling to see her do the yard work without me. Maybe I should get her a riding mower.
  • Major League Baseball (MLB). Are you kidding me!? Rules? It's hard to believe how much I hate something, now that I loved for so long in my youth. The NFL is almost as bad, too. So did those sports change or was it me who changed with the passage of time?
  • Speaking of "time", now there's a great four letter word. I'd guess that word appears in more songs, poems, speeches, books, essays or other writings than any four letter word in the English language. Google it. I didn't, yet. What makes me love that word is how many definitions and connotations it has. Look it up in more traditional reference books, like a dictionary or thesaurus and you may be amazed at what you will find. 
  • Congratulations Tony Yarber, newly elected Mayor of the City of Jackson! We now have the potential to have a great city once again under his leadership. I noticed one of the greatest elected officials in the history of Mississippi was in attendance at his inauguration offering his support. Guess who? We will be just fine, Jackson.
  • Have you ever noticed that the people who push for "Prayer in Public Schools" do not attend public schools, nor do their children attend public schools. I guess that's why they don't attend because they want to go to schools that allow prayer. Strange how people like that are so inclined to speak out on issues they don't get.

Tuesday, April 22, 2014

Tuesdays After Treatment

Another bad day following my week of treatment has become the norm. Specifically, it seems like Tuesday is the worse day so far.  This is the third consecutive Tuesday after my rounds of  treatments when I feel worse than any other day.  It actually started out as a great Monday (yesterday) until about 1:30 pm. Then I started going down hill very fast. By 5:00 pm it was as if I was a walking drunk. I was shaky, almost to the point of total exhaustion, such that my body started shutting down. We made it about three more hours past supper and by 8:00 pm I was in bed.

This morning, if there is such a thing as morning, I got out of bed at 2:00 am.  Mind you, if I did sleep at all between 8:00 pm and 2:00 am, I don't remember it.  So maybe I did sleep some, at lease my brain thinks so. My body, on the other had, is still whipped. I know this will pass because every month for three months, Tuesday after treatment week sucks. Usually by Wednesday or Thursday I bounce back, pretty well.

The reason I was having a very good Monday was because I had my weekly blood tests (CBC) that morning, the results of which were the most encouraging since I was diagnosed with MDS. For the first time in four months my White Cell counts fell within the acceptable range, just barely.  Also, my Platelets more than doubled from the prior week, still low but as high as ever since treatment started. My Red Cells were about the same as before, but at least not any worse. That means I do not have to have any blood transfusions this week, the Vidaza (Chemo) may be working and we are making some measurable progress.

Sunday, April 20, 2014

Happy Easter - April 20, 2014

Today I had my last treatment in my third round of the chemo injections. Yes, even Easter Sunday morning is not immune from the necessary treatments prescribed by my Doctor. While God's healing touch knows no days off , I suppose his medical disciples must do the same.  On Resurrection Sunday we pray that the one who came for us, served us, taught us, died for us and was raised for our salvation will grant me the healing touch of his grace.

We finally were able to get to a church worship service this morning, our annual Sunrise Service at Briarwood Presbyterian Church. This was the first time in three months to make it back to the church, so this was a wonderful blessing to join our friends and neighbors in Worship. We met outside at 6:30 am and saw the sun rise on a nice, cool Easter morning. Afterward, we enjoyed a good breakfast hosted by the church, as well. I was uplifted, enjoyed the fellowship, message and seeing the Rising Sun along with the Risen Son.

So far our journey has been a blessing to behold. Oh it has not been without a few rough spots but we have been filled with so many acts of kindness, love and prayers that it sustains us every day. We continue to meet amazing medical care givers at the Jackson Oncology Associates clinic and at the Baptist Hospital here in Jackson. They are truly special people who provide the most uplifting, compassionate care I have ever encountered by medical professionals. I may elaborate more on these fine people in a later post.

Saturday, April 19, 2014

April 19, 2014 - Third Round of Treatments - Song

"There's a darkness upon me that's flooded in light.
In the fine print they tell me what's wrong and what's right.
And it comes in black and it comes in white
And I'm frightened by those who don't see it."

This quote from the Avett Brothers describes my mood and attitude these days of reflection on my condition. The song is entitled "Head Full of Doubt/Road Full of Promise".

Sometimes Song is what moves me to reflect on the good and not so good that I may be feeling.  I guess you could say I'm a spiritual person. Yes, much of that comes from my religious up bringing and passion for knowing more about God.  Much of this came about by my love of Bible study, my constant need to be with faith partners from my local church and from my family and friends.  Yet I have discovered a much greater sense of my spiritual being through so much of what God is doing in my life now, yesterday and in my past life over the years of my time on his great creation.

I'm so grateful for my children James and Sarah who have become remarkable persons in their lives. James and his wife turned me onto the Avett Brothers about 10 years ago. Sarah and her husband Ryan played the song "I Will Wait" by Mumford and Sons one day last year because they wanted to show us how their 3 year old son,  Cason would start dancing as soon as he heard it played in their home. I listened to it several times and enjoyed watching how it moved a 3 year old.  So I became hooked  by Mumford and Sons. Song must be many things to move me.  These two groups move me to tears of sadness and great joy.  I commend their music to your list of wonderment and, if like me, you will see the "Spirit" in them, too.
Thanks James and Sarah and Cason. Just don't expect me to dance like y'all.

Their is great beauty in Song. While watching the recent TV presentation of  "Another Day/Another Time: Celebrating The Music of Inside Llewyn Davis" I discovered several more musicians and artist who I had never heard before and a few that I knew but now saw in new collaborations and harmony with other artists from past and present. Jack White just blew me away. The Punch Brothers were so amazing. I discovered a group called "Lake Street Dive" and fell in love with the power of  Rachel Price in her soulful Songs from their Album: "Bad Self Portraits" and specifically the cut "You Go Down Smooth".

Even Jason Maraz has become one of my favorite artists because he writes great lyrics, has a beautiful performing voice and he reminds me of James in so many ways. So as much as I love and still enjoy lots of old music from my youth and younger adult days, these contemporary artists speak to me in powerful new ways, as well.  So what does any of this rambling about Song have to do with my treatments and my health issues?

"There's a darkness upon me that's flooded in light".  The flood of light is the goodness that comes to me in times of darkness.  People I know and now many that I never knew before have entered our lives and bring great light,  flood me with light in their care, compassion, love and goodness. It's because they know about my darkness in the experience of having an incurable illness. They, like me, were "frightened by those who don't see it". When someone surrounds you with their love it shows like the brightest light you will ever see or experience. It is the great light of God, the Spirit, Force or whatever you call it that provides me great comfort and Joy these days of difficulty.

Above all, Janine my loving wife for all times in my life has been the great Song in my life.  She sings of hope, constant abiding love and is always there for my every mood or need. She is my Great Light and she knows about my darkness and set gets it and want let me forget her great bright light in my life.

Last night we were watching the season finale of "Parenthood" on TV. We had actually recorded it on our DVR previously in the week. While it was a moving finale to a season or even the end of a good TV show, as it may be, the final scene of the show had the great Bob Dylan song performed by the even greater performer, Richie Havens playing in the background "The Times They Are-A Changin". Those lyrics now taken in light of our struggles moved me to tears. It was not the TV show as much as it was the love I enjoyed in that moment sitting in our chairs watching a good show and hearing great music with my loving wife.

Thanks to you all!