On Signs and Changes

On Signs and Changes

Ok, so far it has been pretty easy dealing with my MDS (other than the scare factor).  I mean the MDS only has been indicated in some clinical numbers, low blood counts, some cells that in my bone marrow that are slightly more than what they should be, etc.  Just some numbers on a clinical chart.  Well, I think that the clinical diagnosis only is coming to an end; I believe that I am now seeing signs that indicate that I have MDS, not bad signs, but definite indications that something is now changing. 

Sign number one – I’ve had a rash on my legs. It is not bad, does not itch, does not respond to hydro cortisone.  From my research, it could mean a reaction to low platelet count.  But it went  away for the most part.

Sign number two – some mild fatigue.  Yeah, sometimes I get tired and need a short nap during the day.  It has been happening more during the past 6 months than before and maybe it is a consequence to my sleep apnea and maybe not.  I do know that fatigue is the most common symptom of MDS. 

Sign number three – bruising easily, especially on the arms.  OK, so I have been working at Home Depot sometimes loading heavy cartons of floor tile for customers as well as doing a bunch of home improvements that can bruise me.  But my arms and legs get bruised far more often recently than before.  Another symptom of low blood platelets.  My arms now seem to be in a constant state of having bruises.  I am really believing that this is a definite symptom of having MDS.

So I have some pretty definite proof that I have MDS – what have I been doing?  Although I know that my MDS is pretty much an incurable condition, I have made some changes in my life.  I am doing 30 minute power walks about 3 times a week – it really energizes me. I have read that exercise is probably the only thing that can help the fatigue often associated with MDS.  Also, I’m starting  to be more of a germicide – I’m washing my hands more often, especially after being in public places, try to stay away from sick people , and am thinking about how to manage my malady if my immune system gets worse.  Additionally, I’m trying to eat and sleep more healthily; don’t know if it will help, but it certainly cannot hurt.

I about a week, I'll see Dr M again. Will check the old blood levels and see where I am. Hopefully, I'll have a good checkup.

For the last 10 + years I have downloaded a monthly inspirational calendar as my computer desktop background from Crosscards.com (http://www.crosscards.com/). This month’s serves as my inspiration.  It reads:  “Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷ For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”  This reminds me that I should not focus on what is ailing me, but rather on what Jesus is promising us to come.  If we focus on what is ailing us, we will lose sight on the wonderful things ahead of us, we will become self-centered, concentrating on the illness ahead of us only and not on the wonderful things God has promised.  Please check out this month’s calendar (We do not lose heart in Inspirational Links) 

Thank you for reading my blog and please feel free to pass this along to whoever you feel may need to read this.  Comments encouraged.

God’s peace

Hope, Cautions, and Confusion

 Dr M is the doctor Lu and I have been seeing for my MDS.  He is a younger doctor, has incredible credentials, is associated with an excellent clinic, and has the ability to explain the intricacies of MDS is a language Lu and I can fairly easily understand.  Furthermore, he is willing to take time to spend with Lu and I either in the office or by phone.  We feel blessed to have him calling the shots with my MDS malady.

My wife Lu and I were pretty anxious about our last visit with Dr M.  During this visit, Dr M was going to tell us of the results of the bone marrow biopsy and the extensive blood work done previously.  These results were to tell us the type of MDS I had, as well as the severity of it, and what treatment regimen would be needed, if any.  Basically, a lot of what was happening to me, as well as possible prognosis of my malady would be revealed then and Lu and I were real apprehensive to say the least.

  

With MDS, there are two important items:
                 1. What type of MDS do you have?
                 2. How serious is it?

 Dr M told us that the MDS I have is called RCMD (Refractory Cytopenia with Multilineage Dysplasia).  This is the most common type; check it out on the ACS link, if you wish.  Secondly, he told us how serious it is by a medical tool called IPSS which takes three characteristics of your blood and medical condition and gives you a score.  He said that I am in the Low Risk Group and said “You probably have 7 to 10 years”  (The HOPE!?).  I turned to Lu and said with a slight tear in my eye “See, I told you I was going to be around a long time” 

Almost immediately after however, good Dr M warned me that if I have a fever over 100 or if I notice any swelling or lumps in my lympg nodes that I should IMMEDIATELY call the clinic (The CAUTION). So maybe my life is in a little more precarious state than I thought a few seconds before. 

After returning home Lu and I checked out the RCMD type of MDS and were shocked!  The ACS website said that with this type of MDS people have an average of 2 years of life after being diagnosed (The CONFUSION, Dr M said 7 – 10 years, what gives???).  The optimistic me says that I have 7 – 10 years, perhaps even more, while my more pessimistic wife probably is looking closer to the 2 year figure.

This I do know for sure: no one short of God himself can possibly know how long I actually DO have left.  I can choose to live in the shadows of impending doom or choose to relish each day that I am here.  I choose the latter and each day since my MDS diagnosis, I say a short prayer when I get up “Thank you Lord for today”.  I am again blessed with another day of life and hope that I will make the most of it.  Another day, what a blessing from our Lord.  Whether I am feeling really great and am pretty much symptom or am in the midst of my final days, I still have the blessing of another day and hope that I will use it to glorify God.  Thank you again God for another day!

Please check out “Thank you Lord for Today” in Inspirational Links. Thank you for reading my blog and please feel free to pass this along to whoever you feel may need to read this.  Comments encouraged.

God’s peace

On Being Scared

On Being Scared

Most, if not all people have been scared sometime in their life.  It may have been by something trivial such as a sudden loud thunderclap, something appearing suddenly, or as a child, an imaginary boogeyman lurking under a bed.

I can remember being scared by something more than a trivial scare when as a twenty something young man, I was engaged in skydiving (my crazy side) and my main parachute failed.  Out came the reserve chute and I safely floated to earth.  My fellow jumpers asked me how I was and I told them I was fine, but down deep inside, that really scared me a lot. 

Having MDS takes the scare level to new heights compared to my skydiving incident.  First of all, in skydiving, they prepare you for the worst; you are given training on how to handle malfunctions, are told you may experience them, and do their best to prepare you for that day.  In life, you know that someday your life will end, but generally we go around as if we will live forever.  Yes, we may prepare financially, get insurance, a will, even prepare for our funeral arrangements, but we live as if that day may never happen.  And when a life shortening ailment such as MDS appears, we get scared.

Secondly, when you go skydiving, you always wear a reserve parachute; I’ve even know some skydivers to wear two reserve parachutes.  With MDS, there is no “reserve”, nothing known that will guarantee a cure and few treatments that may lessen the symptoms.  And you get scared. 

Last, if you have a malfunction in skydiving, it usually takes only a few seconds, albeit very scary seconds, to resolve the issue.  MDS, from my extensive readings on it, can be a long progressive not pleasant decline down to the end.  And it scares you.  

Lu and I are not so scared that we cannot function; in fact we are both doing our respective jobs (Home Depot for me and pastoring a local church for Lu) as well as all of the other things that life demands.  But in those still quiet moments when all you have is your thoughts and no other distractions, we feel sometimes feel really scared.  As a Christian with a strong faith, I am not afraid of the death part of this malady.  I’m pretty sure I’ll be going to Heaven and that will be wonderful.  It’s the dying part of this process that gets me; not knowing when it will start or just how long and uncomfortable it will be is not easy to live with.  The other part is the fact that Lu and I really love each other and not having the other is sad.  Also, I’m Lu’s biggest cheerleader in her ministry and her rock to get her through the stresses of being a pastor.  It saddens me and scares me that I may not be around always for her.  I’m sure she feels the same.  So we both get scared.

In the midst of the beginnings of MDS and the fears we are facing, Lu, in one of her sermons, included some words from the Bible that gave me the peace I needed to help alleviate my fears.  She included Psalm 23 as an illustration and I don’t know if it was accidental or maybe the Holy Spirit led her to do so, but the words in this psalm sure gave me the peace needed to overcome some of my fears.  Most of you know Psalm 23; it’s the one that starts out “The Lord is my shepherd, I shall not want…”.  It’s also the one that has the verse “Though I walk through the valley of the shadow of death, I shall fear no evil    “; very relevant words for right now.  

So if you are in need of peace, go read Psalm 23; I’ve included a link to it in a new section called Inspirational Links that I’ll start populating with links to words and illustrations that I am finding helpful in my journey through life with MDS. 

Thank you for reading my blog and please feel free to pass this along to whoever you feel may need to read this.  Comments encouraged.

God’s peace

MDS, the beginning

For over years, my health had been pretty great.  No surgeries, major illnesses, only a couple of broken bones and the ability to fight off any cold in about 3 days.  Great health, that is, until mid April of this year.  A routine blood test at a new doctor led to another blood test and a recommendation to see a hematologist who performed even more blood tests that revealed I might have something called MDS, a malady neither my wife Lu or I had never heard of.

What I did not know at the time, was that my blood levels, namely red blood cells, white blood cells and platelets had actually been decreasing over several years.  The decreased counts plus some cells in my blood that should not be there indicated that I had MDS.  (see link on What my MDS looks like).  So Lu and I went to the Source Of All Knowledge, namely the internet to see what this MDS thing is all about and were quite appalled.  Without going into a bunch of complicated clinical terms, we found out that MDS is
1.  Mostly incurable
2.  Almost always life shortening
3.  Is defined as a cancer that sometimes leads to leukemia.

A prognosis like this, needless to say, suddenly changes many things in your life – what is important, what should we be doing, why me etc as well as instilling a bunch of rather unhealthy emotions  such as fear, hopelessness, sadness, and so on.  Our lives seemed to be suddenly turned around and we did nothing other than contemplate the progression of the MDS in my life.  (If you wish to learn more on MDS, check out American Cancer Society – MDS information and Aplastic Anemia and MDS foundation in the Links section. )

Although I am the eternal optimist, I now find this optimism challenged.  But I still find that optimism and inspiration can be found; sometimes you seek and find it; sometimes it just miraculously appears as it did a few days after learning about my MDS.  I was reading Joshua in the bible and one key phrase kept appearing: “Be strong and courageous” just the words I needed now.  If any time I needed to be “Strong and courageous”, now is certainly the time.  Of course, implicit in this is that one must be Strong and courageous in the Lord, not just on your own.  I know that I alone don’t have the strength for this journey that I have been put on.  Yes, I am pretty much without any symptoms right now, but I know that sometime things will change and I’ll need even more strength and courage then.

So you may ask why I am writing this blog, a fair question.  There are several reasons:
1.  Keep friends, family and possibly other MDS sufferers abreast of my condition.
2.  Raise awareness of MDS
3.  Give encouragement to those going through MDS or other tough times in life.
4.  To keep myself focused on being an encourager and staying positive through this chapter in my life.

Thank you for reading my blog and please feel free to pass this along to whoever you feel may need to read this.  Comments encouraged.

God’s peace