My Guardian Angels

With constant testing, examination and treatment, I have become very weary of this illness. However, it's so encouraging knowing My Guardian Angels are participating in my care. The spiritual vehicle used by God to assign comforters, defenders, care givers and protectors for us can not be casually dismissed as irrelevant. For I believe that God chooses mortals as guardian angels, too. So it's the spiritual guardian angel and the mortal ones that live in our presence. God breathes life into both and each has a role in my care.

Unseen, spiritual angels can be difficult to comprehend when my faith is shakey. Knowing and believing opens our hearts to God's power and goodness. They connect me to God more than I deserve. We do see through our own eyes the faces of our mortal care giver angels. Some are so familiar that we don't think of them as angels, at all. Rather, they are medical staff, family and friends who treat us with care, encouragment, compassion and prayer. I can not do this struggle without you all. You are worthy of my highest praise and gratitude.

We have been at home for eight days and I'm feeling better. My appetite is coming back, but my strength has not gotten much better. After spending five weeks in Houston hotels and the MDA Hospital, being in our own surroundings has giving me a renewed appreciation for "home". I love our supporters who call, visit and provide us meals and gifts. Their presence gives us warmth and comfort. Getting local church and community updates from our friends and loved ones is a blessing to both of us.

I'm taking several strong antibiotic, antiviral and antifungal medicines. My body is weak as a result. Dizziness and unstable walking is my latest issue. I'm using a cane to help with my balance as I move about. Often, I get winded from doing simple tasks, like showering, shaving, brushing my teeth, etc. When I stand for more than 5 to 10 minutes my body gets weak and my breathing gets labored. I want to believe the strong medicines are causing most of my issues. However, fighting and preventing infection is of utmost importance, so I continue following my medical team's advice, for the most part.

Four days from now we go back to Houston for my second round of chemo treatment. We do not look forward to this trip. If all goes as hoped, we may be back home in about a week. Since the chemo I will be taking is lower in strength than my first round of treatments, I hope my recovery is easier. If not, our stay my be longer than a week.

Finally, my Angel Janine has sacrificed much of her normal life for the past seven months caring for me. Her strength, demanding presence and constant care giving is a beauty to behold. She gives me all my necessary home medical care from getting my medicines organized and administered to changing my PIC line caps and dressings. She has administered chemo shots, as well. None of this comes easy to her, but she does the necessary things to keep me on the healing path. She still finds time to do all the household chores we both used to do. She does it all! My illness defeats me without her love and care. Angelic solider she remains. I Love You.

Home

A quick update that we arrived home safe and sound Saturday late afternoon.  Robert did very well on the trip.  We are both tired but are so happy to be in our own place for a couple of weeks.  

Jail Break!!! Some good news!!!

Dad's bone marrow results showed his blasts were 4%!!! Anything under 5 means he's in "bone marrow remission". His blood counts are still low so not complete remission but it's good enough to GO HOME!!

It's only for two weeks, then back to MDA for round two while we wait on a bone marrow match!!

Another small -- but bigger -- victory!!

Released from the Hospital

Dad was discharged today.  He's doing better but still very tired and weak.  He's been working with physical therapy while in the hospital to regain his strength and she recommended he get a cane to help him walk.  

Mom and Dad are back together at the extended stay hotel near the Hospital. He's on strong antibiotics and anti fungal medications.  One of the medications is super expensive so until they get a price reduction approved, he'll be going to the hospital to receive it via IV every day. 

We will meet with his MDS team, Dr K and staff, on Friday afternoon to get the results of the bone marrow test and hopefully figure out when he'll let Dad go home for a couple of weeks.  So hard to go day to day without a plan but this is the path that we are on while we wait for a Bone Marrow Match. Cancer doesn't really like to make things easy or simple.

We have a long journey ahead of us but we are enjoying the small victories.  Hoping and praying that Dad won't see a hospital bed until its time for a transplant!  Thankful I live/work close enough to visit, bring supplies, give hugs, etc.  

Keep praying!

--Sarah
Save a Life!  Join the Bone Marrow Registry.

Hospital Update

Robert is still in the hospital.  The doctors are pleased with how he is doing but want him to be in the hospital at least through Tuesday and then to hang around Houston for another week!  We have not yet heard the results of the bronchoscopy he had on Wednesday morning trying to determine what type pneumonia he has.  There has been no fever at all since his admittance to the hospital.  He still has no appetite and it is difficult to get him to eat anything but he does try at breakfast and has a Boost milkshake at lunch.    

Wednesday he started physical therapy and Thursday occupational therapy.  A dietician has been in also trying to encourage him to eat.  Robert has been sitting up in the chair for several hours a day and has walked his room (it is big) and the halls with the therapists.   

Robert will have another bone marrow aspiration and biopsy Tuesday morning.  He is scheduled to see his MDS doctor on Friday afternoon.

I can’t say enough good things about the doctors, nurses and staff at MD Anderson.  Everyone is so pleasant and upbeat, always looking for a way to help.  The nurses have been awesome.  

We ask that you continue to pray for a better appetite and strength so that we can head back to Mississippi soon.  

Hospital

Robert was admitted to the hospital this morning.  We came to the Emergency Center at MD Anderson about 3:30am because his fever reached the level the leukemia patient instructions say to come in.  He has had recurring low grade fevers in the late afternoons into the evenings for a little over a week despite being on antibiotics.   He will be here until at least Thursday; has to be fever free for 48 hours before he can leave. During the day, his temp is normal; usually starts between 4-6 until the wee hours of the morning.  He is on pretty powerful antibiotics.  Chest x-ray showed possibility of pneumonia so they have taken him for a Cat-Scan of his chest to get a clearer picture. Will update the blog as I know more.

Friday's Doctor Visit

Our visit with Robert’s doctor on Friday afternoon did not give us the desired results as far as our going home soon. Dr. K now wants us close by for two more weeks mainly because Robert has not recovered as quickly as he had hoped. He has been running a low grade temperature in the evenings which is of concern to the doctor.  He has remained too weak to travel or to do hardly any physical activity. His weight is down about 12 lbs since his hospital stay and his blood counts remain low. We had to go from the doctor’s visit immediately to the Ambulatory Treatment Center (ATC) at MDA for several infusions:  platelets, red blood cells, magnesium and fluids.  He also started a seven day antibiotic IV regiment.  We left the hospital at 10:45pm last night.  A really long day since we got there around 8:30 that morning.  The platelet count had dropped to its lowest level so the infusion was a big boost. The extra red cells have him feeling much better, energy wise today.  Robert has had trouble keeping himself hydrated and his appetite continues to be poor (although he has done better today).  The doctor told him to eat many small meals though out the day but nothing tastes good to him.  Also, his tolerance to strong oral antibiotics is not good so the doctors have changed these several times adding some, dropping others such that it makes it hard to keep track of what he is to take each day.  I have to have charts for everything.  Plus we are beginning to experience the “donut hole” of his Medicare drug plan.  I will be meeting with a pharmacist insurance specialist next week to discuss this.  

We  both want very much to get back home for a week or so but not if in constant fear of taking a turn for the worse without being close to Robert’s care team. For now we are still in a nearby hotel and Robert will be going to the ATC on a daily basis for some antibiotic infusions for seven days.  Of course, the every other day lab tests continue. 

We thank you for your prayers.  Please keep them coming.

Houston-Week Three

After meeting with the PA following Robert’s blood work Wednesday, we learned we will probably be in the Houston Medical Center district another week.  Robert’s counts have not started coming up enough for the team to feel comfortable letting us drive home.  Plus he is so weak that I would not feel comfortable driving that far with just the two of us.  We have started looking for an apartment for a short term lease since we will be coming and going so much in the future.

Robert is very weak.  We believe part of the problem is due to an antibiotic prescribed for him that he has never done well on.  His PA was surprised when she saw the dosage the hospital attending had prescribed when he left the hospital.  That medicine has been changed so hopefully we will begin to see a little improvement in his strength.  Today I rented a wheelchair so that I can get Robert from the hotel room to the front door of the hotel as we are really far from the elevator that leads to the front.  We take the hotel shuttle to the hospital so that we don’t have to worry about parking.  At the shuttle drop-off location, I pick up another wheelchair to get him around the hospital.  We meet with his MDS doctor Friday afternoon.

Because of the additional week in Houston and us going crazy in a small hotel room, we moved yet again to an extended stay hotel within walking distance to the hospital.  Of course, we are not walking but it is nice to know the hospital is so close.  We feel like we can breathe again having so much space.

Robert was able to sit up more today than he has the last several days.  He has eaten a little but not enough although I know this is all part of the side effects of his treatments.

Thank you all for your continued prayers.

Saturday Events

The end of week two in Houston brought a trip to the MDA Emergency Room for Robert.  He finished all chemo treatments on Wednesday afternoon.  He had been feeling okay, eating little portions and taking slow walks around the hotel property to regain some strength.  Sarah and her family came down Saturday morning so we could meet them at Hermann Park for a visit in an outdoor setting.  It was a cooler Houston morning and the perfect morning to be outside.  While standing in line to ride the train, Robert started feeling faint after feeling fine all morning long.  I was able to get him to a chair away from the grandchildren.  He began to feel even worse.  I had forgotten to bring his gator aid so Sarah was looking for him something to drink.   While she was gone, the manager of the closed park cafe saw Robert’s distress and asked what he could do to help.   I had him call the paramedics because I knew there was no way we could get him to the car.  The cafe manager got a towel and bag of ice to use on Robert and then he went to wait for the paramedics to get there so he could show them where we were.  He was a life saver.  He was late opening the cafe because of his help to us.  A truly wonderful young man.   Sarah was getting our car so she could follow us to the hospital which was less than five minutes away.  Ryan made sure the grandchildren got their train ride without being aware of what was going on with their G-Pa.  When the paramedics took Robert’s blood pressure, it was extremely low.  After getting to the ER, he was assigned a room and within an hour his blood pressure was almost normal again without any medicines or fluids.  I believe just being able to lay down helped him a lot.  But because of his medical condition, the ER doctor ran all sorts of tests before starting him on fluids.  His white blood cell count is almost nonexistent, his red blood cell count is still low and his platelets had dropped again since Friday’s lab work so Robert got a bag of platelets before we left the ER.  By early afternoon, Robert was feeling fine, hungry and ready to come back to the hotel.  Of course, you know you never get out of the ER in a timely fashion.  After eight hours of being in the freezing ER room, he was finally released.  Robert was able to walk from the car to the hotel room without any problem.  He was hungry; wanted a burger so I went to Five Guys and got him a cheeseburger.  I was so proud that he ate almost the entire burger.  We both slept fairly well last night.  Our Sunday plans are to do very little.  This episode is very similar to the one Robert had back in February after his first cycle of chemo in Jackson.  

Please continue to pray for strength for Robert and for tolerance of all the medicines he now has to take.   

Hospital Release

After spending five difficult nights and days in the hospital, Robert was released Monday afternoon.  He finished the five days of IV chemo but still had 5 more chemo treatments by injection.  Before we left the hospital, his wonderful nurses gave me the opportunity to give Robert the Monday afternoon injection.  Needless to say, I was a nervous wreck but did a good job according to Robert:)  Today I have given the 5am and 5pm injections without hurting him.  Only two more tomorrow and all the chemo will be over for this trip. I have to flush his PICC lines before the night is over.  This nursing duty is totally out of my confidence levels.   Robert still has to go for lab work three days a week and meet with his doctor on August 8.  The chemos have really dropped his counts even lower so he is wearing a mask when we are out in public and we are both washing our hands all the time.  He is feeling somewhat better; has been able to eat some food and is walking around to get his strength back up.

After 8 days at the Rotary House hotel (owned by MD Anderson and connected to the hospital by a skywalk), we had to move to a different hotel as the Rotary House was booked.  It is a wonderful place to stay; I have learned to book as soon as you know you are coming back and book for an extra week just to be sure you will have a room.  It is a very popular place due to the convenience and everyone there has a family member/friend in the same situation you are so there is a lot of sharing of stories and helpful tips.   All of the hotels in the Medical Center district offer medical discounts and shuttle service to MD Anderson.

Thank you all for your continued prayers.  As I have said before, we have a long road ahead of us.  

Update from Janine 7-26-2014

I haven't felt like writing or doing much of anything lately so Janine is updating here for a while:

Robert has been in hospital at MD Anderson since Wednesday afternoon.  He is now a participant in a clinical research study.  He is receiving two types of chemo; one by IV once a day for 5 days and another by injection twice a day for 7 days.  He is losing his appetite already, has experienced the nausea feeling, and generally does not feel good.  His blood counts continue to drop.  All of this is expected side effects of the treatments.  The first 24 hours in the hospital were pretty hectic and he didn’t get much sleep.  Friday was calmer and he slept on and off most of the day.  Saturday morning was a bit rough but he is feeling a tad bit better this afternoon. He  even felt like taking a shower!  I had to go to a training class on “Central Venous Catheter Dressing Change” this morning.  Each caregiver is required to go to the class twice and then demonstrate to the Infusion Therapy team that I can do the flush and dressing change.  This will be interesting!  Robert does have an infection in his big toe from an ingrown toenail that has been treated by the MD Anderson podiatrist.  It is looking a little better but with his low low white blood cell count, it is of concern.  We were told he would be in the hospital from 7-10 days then would be out-patient for another week.

On Tuesday, Robert, Sarah and I met with the Stem Cell Transplantation team.  We were all very impressed.  We are proceeding with the plan for Robert to have a bone marrow transplant once a suitable donor match has been found.  His siblings will be the first to be typed for a match; if neither of them are a match, the National Bone Marrow registry will be explored for a match.  

There will be a lot more bad days before there are good days.  MD Anderson Hospital is a wonderful place.  Everyone has been so nice.  Have a feeling we are going to get to know a lot of the folks really well.  

Review, Summary and New Chapter

Review and Summary:
About six months ago I was diagnosed with  myelodysplastic syndromes (MDS) which is a cancer of the blood. My three major blood cells: White, Red and Platelets are all low causing symptoms of extreme fatigue, susceptibility to infections and being prone to easy bruising and bleeding. I have been under the care of an oncologist who put me on a regiment of chemotherapy injections administered for 7 consecutive days, once a month for 4 months. Very little, if any improvement was found after these treatments.

New Chapter:
Last week we traveled to MD Anderson Cancer Center in Houston, TX (MDA) for further evaluation and testing. My initial tests there (blood and bone marrow and examinations) confirmed my MDS diagnosis and showed my conditions is still not good, even a bit worse than when I was first diagnosed six months ago. My new doctor also reaffirmed the initial treatment was a correct first step and recommended a new course of action in the upcoming weeks. This may involve a different chemotherapy regiment and possibly a stem cell (bone marrow) transplant in the not too distant future. I am also being evaluated for one of the MDA clinical trials which will begin next week.

While this all seems rather scary, we remain optimistic for a positive outcome and look forward to the "miracles" MDA with God's help or is that the other way around? Anyway, the next few weeks will be adventurous what with all the bigness at MDA Houston and their medical expertise. We begin with about 10 days of travel, hospitalization and rest & recovery. Keep us in your prayers as we embark on this step in our journey.

MD Anderson On the Horizon

After my June 23, 2014 appointment with Dr. Young we discussed the possibility of a referral to MD Anderson Cancer Center in Houston for an evaluation and second opinion from there MDS experts. She felt this was a good time for our going there since we had finished my last treatments over a month ago, things were not improving and my system was clear of the chemo treatments.  Apparently MDA likes to evaluate new patients after other treatments have finished. My first of two days of appointments begins on Tuesday, July 8th. If all goes well my last appointment will be on Wednesday after I have completed a variety of tests and lab work. Then I get to see my doctor for consultation, examination and evaluation on Wednesday afternoon.

We plan to travel to Houston on the Sunday before my appointments on Tuesday so we can get in a visit with Sarah, Ryan, Cason and Claire at their home. Since we will be driving long distances we will likely need to spend a few nights along the way going and coming.  We will also stay in a hotel for two nights near MDA on Monday and Tuesday. Long travel is not something I do well with these days so this is going to be an adventure.

Transitions

As June 2014 draws to a close we transition to changes in my health care plan.  May 2014 concluded with the completion of my fourth and final round of chemo (Vidaza) injections. Once a week I had my usual blood test on Mondays. The results were not as good as we had expected, but at least my major counts had not gotten significantly worse.  For the most part things stayed about the same, with slight fluctuation from week to week. My physical strength and ability continued to be weak and mentally my attitude waned as I struggled with what the future held for us.

Faith is a funny thing when faced with uncertainly. If I were truly faithful my attitude would always be solid, positive and upbeat. I have to keep reminding myself that God is in control. He directs the work of the doctors, nurses, lab technicians and all others in our health care network. So when things don't seem to go as well as I had hoped it's easy to get discouraged.

Before the MDS ... COPD

Late in 2010 I went to the doctor for one of my routine sinus congestion, drainage yuk sicknesses. This time they did a chest x-ray that didn't look good so Dr. Headley scheduled me to have a CT scan of my upper body. The procedure was done a few days later at a rather new Baptist imaging clinic located in Madison, MS. They sent the results back to Dr. Headley who called me in for a consultation the next day after the scan. He called it COPD with acute emphysema.  I wasn't totally surprised by his diagnosis but I was relieved it wasn't Lung Cancer.
Since I was a life long smoker from one to two packs of cigarettes per day I had no one to blame but my self. However, in my later life it was proved that the evil tobacco companies played a much larger role in my and millions more people's addiction to nicotine.  So around 14 years of age when the "Marlboro Man" seemed so cool, little did I realize that the Phillips Tobacco Company was putting ingredients into its cigarettes that made the prospects of my becoming addicted far greater than was thought by most at the time. Later I dropped the heavy Marlboro Reds for the lower in tar and nicotine brand of "Marlboro Lights". Once again, their false advertising was proved when it was discovered these were just as addictive as the heavier brands. All this is to say it made quitting smoking for those of us so addicted to nicotine almost impossible.
With this diagnosis, and discovering there really is no cure for my illness, I could have proceeded in one of two directions. Being so addicted to nicotine, I could have continued on smoking and just let this overcome me.  That was the easier way because I had to do nothing but get worse and worse over time, eventually leading to terrible treatments that do nothing more than waste too much money on medical care. Additionally, my family would suffer far more than me trying to care for me.
The other, more obvious choice was to quite smoking once and for all and to try and live a healthier, tobacco free lifestyle.  Easier said than done!  If you have never been addicted to a drug or substance that controls your life I'm happy for you. But I also know that you can't get someone to give up their addiction by just telling them they ought to stop, especially if you don't really understand. It is just not that simple.
In exploring my options I was told of a new clinic that was dedicated solely to getting people to quit smoking.  It is a free clinic funded by some of the grant funds make available after some of the big tobacco companies lost their law suites. Our clinic called ACT Center for Tobacco Treatment,
Education and Research is located in the old Jackson Mall that now houses numerous medical clinics provided by the University of Mississippi Medical Center. They were a God send for me. Along with the medication they prescribed "Chantix" I was able to quit smoking in less than three months.
While I was going through their tobacco cessation program I also started regular exercising. Walking became my outlet and it grew to become one of my favorite activities. It wasn't too long after this that I started feeling and looking much better.  The hold that cigarettes had over me was broken and I was so much better off than before.

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.

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.

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.

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.

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!

Anticipation - March 18, 2014

When you have injection treatments one week out of every month it takes getting used to the waiting between these chemo sessions. Monday began my second round of treatment. I'm hoping it goes smoothly with little if any side affects. Monday was also a full Complete Blood Count (CBC) test and an appointment with Dr. Young, my Oncologist. This will be our 2nd full month under her care.

The more time I have the more I spend reading.  Unfortunately, reading about MDS has been a frequent subject. The more I read the more I shouldn't.  Being informed is a good thing. When the information is not easy to digest, is not good news but rather bad news, being informed is still good. This condition, in my case, is not good.  It seams to be something that usually leads to much worse consequences. Apparently, most of the treatment options, to include the current course prescribed for me, attempt to slow down the progression of the disease. The goal is to give me a prolonged life expectancy as well as to hopefully have my blood levels return to a more acceptable condition.  While a cure is not in the plans, we are hopeful it will get better.

The current chemo treatment is intended to kill the bad blood cell "blasts" and to help my bone marrow to manufacture more healthy blood cells.  While its too soon to tell if the treatments are working Dr. Young appears encouraged, so far since my blood levels are not getting much worse and a few indicators have improved, slightly.

Blood Platelets

Today, Wednesday, March 5th, was my weekly blood tests (CBC).  We got to the clinic about 15 minutes earlier than my 11:00 am appointment time.  That worked out well as I was in and out before 11:00 am. While we were on our way home and to pick up a lunch carryout from McAlister's Deli, someone from Dr. Young's office called to say I needed to come back for platelets infusion because my count was very, very low. So we headed back to the JOA clinic after eating our lunch. The whole process to infuse me with a large bag of blood platelets took about 3 hours. Hopefully, that will do the trick and my platelets counts will stay at a better level. While in the hospital last week Dr. Young had me get a blood infusion of 2 units of blood with Red Cells as those counts had gotten too low.

I shouldn't be surprised that I've had to have more blood and platelets because Dr. Young said the chemotherapy injections would cause things to get out of whack for awhile.  I'm told to take all of this in stride as it's normal.  Being sick sure takes getting used to.

Hospital Stay

For three days and two nights we were imprisoned at Baptist Hospital, at least that is how it felt.

Everyone has always said that the worst place to get any rest is in the hospital. They are so right. For me the most interesting thing is how easily the hospital staff can ignore you when you are under their care.  Don't get me wrong, they were very delightful people and were always nice and respectful to us. It's just they operate on a completely different time clock.  In the Army, we called it "hurry up and wait".  It seems that is how they operate, as well.  When a staff person tells you something will happen at a specific time, she is lying and knows it.  Rarely did anything ever happen when they said it would. Even our discharge was delayed a day due to their lack of attention.

Hospitals are huge businesses, but with the advantage of having you in a prone position, with your ass exposed to their overpriced, form of terror.  I can't wait for the bills to come rolling in for this experience.
I guess $15,000 to $20,000.  We'll see.

Anyway, I guess I can mark this one off my "bucket list".  Not that I put it on my list, but this was the first time in my 65 years on this earth that I have spent the night in the hospital.  Well, maybe I did when I was born, but otherwise this was it.  Unfortunately, it probably want be my last.

Emergency Room

On Tuesday morning I got out of bed around 3:30am. This was a common occurrence since my condition was discovered.  Around 5:30am I started feeling nauseated and my body was hurting all over.  I decided to take a hot bath to ease my pains. That proved a bad idea.  While it did give me immediate relief, I became overheated and very lethargic. I tried to get out of the tub after about 15 minutes of hot water soaking and most likely fainted. I was very weak but was able to call for Janine to help me. She could barely hear my calls for help as she was still laying in bed in our bedroom which is not within site of the guest bathroom where I was in the tub.

Janine was not able to get me out of the tub and she saw I was in a very bad way. Not knowing if I was having a heart attack or stroke she called 911.  I think it took the ambulance and firefighters about 10 minutes to get to us.  One of the firemen picked me up from the tub and placed me on the ambulance stretcher.

AMR is our ambulance service in Jackson.  The medics that worked with me were very professional and did an excellent job caring for me. Janine wisely chose to drive her car to the Baptist Hospital ER instead of riding in the ambulance with me.  The vehicle was not comfortable and I could feel every Jackson bump in the road.  Thankfully, they drove at a normal pace without a blaring siren.

The Baptist Hospital Emergency Room is where I was taken.  My oncology clinic and doctors as well as my pulmonary doctor's clinic are all located within the Baptist campus so it was the most logical place to go.  I guess we got there around 7:00am and by about 10:00am I was admitted to a private room.  The ER staff and doctor did a thorough job of assessing my condition and getting an understanding of the recent history of my situation.  Luckily they ordered a chest e-ray, which I protested because I thought Dr. Young did not want anyone doing any procedure without her consultation. Anyway, the ER X-Ray person rolled me and my gurney to their lab and made me stand up for the x-ray pictures. I was not happy as I was still very weak and shaky.  They even had to redo one of the pictures because they did not keep my IV hose from interfering with the x-ray.

The x-rays showed I had pneumonia. So admitting me was a good call.

First Round of Treatment

We started going in every day for my shots on Monday morning, February 17, 2014.  We continued each day for 7 days and just completed the Sunday shots, today, February 23rd. Now I wait for three weeks and go back for round two.  In the meantime, I will have weekly blood tests on Wednesdays.

The injections seemed to cause little serious side affects.  I did experience some redness around the injection sites, but not too bad.  Also, the shot locations were changed each day to avoid over exposure at specific locations.  We used each arm, each side of the stomach, each thigh and finished today in the right hip. I still get tired very easily which is a normal side affect of these treatments.

Results from Bone Marrow Biopsy

The much anticipated day finally arrived on February 5th,  two weeks after the bone marrow test were done. It was a relief to get the results so we would know what we were dealing with.  Dr. Young called my condition a form of blood disorders (cancer) known as Myelodysplastic Syndrome with Blast. (MDS)

(See these links for more on this condition:)
http://www.cancer.gov/cancertopics/pdq/treatment/mds-mpd/HealthProfessional  and
http://www.webmd.com/a-to-z-guides/myelodysplastic-syndrome-causes-symptoms-treatment)

While my diagnosis could have been much worse, this was not good.  She did her best to explain this condition in terms we could understand and also gave us some literature and a few good web sites to see and read on our own. Needless to say we were very unsure about all of this as it sounded scary. She did feel now that we had a firm diagnosis, we could pursue a course of treatment with an expected positive outcome. Her recommended plan was for me to begin a series of chemotherapy injections (shots) over a four month period, one week out of each month.  The shot is with a drug called Vidaza.

(http://www.webmd.com/drugs/drug-90394-Vidaza+inj.aspx?drugid=90394&drugname=Vidaza+inj&source=1)

Basically, the treatments are administered every day with two injections given me at the JOA clinic, Monday through Sunday. That week constitutes the first of four cycles of treatment.  Each Wednesday new blood tests will be conducted to evaluate if my blood levels have improved, or gotten worse.  Consultations with Dr. Young we be done if needed and we begin the next weekly treatments the following month.  We continue in this manner for the full four month course of treatments.  Then another bone marrow biopsy will be done, the results of which will determine the next course of treatment, if needed.

We were given a schedule for the next two months beginning with the first treatments on Monday, February 17th, 2014.

Insurance Issues - Medicare

Since we had to wait two weeks for the biopsy results it gave me time to concentrate on pressing health insurance matters.  I was/am scheduled to go on Medicare on March 1, 2014 which is great but trying to get an understanding about necessary Medicare Supplemental Insurance can be challenging.  This was especially so for us since we have always been covered via our group insurance plans where we worked. Once I retired from the City of Jackson in 1996 I was added to Janine's group policy with the State of MS. It was smooth sailing from then until now.  However, when you are in the middle of some very expensive medical procedures the last thing you want is to drop or lose coverage.  This could kill us financially as health care expenses are totally ridiculous if you are not insured.

So my investigation into the various options became an obsession.  On top of that about 6 months prior to becoming Medicare eligible, I started getting all kinds of unsolicited mailings, e mailings and phone calls from agencies and companies wanting me to sign up with them for supplemental coverage. I did talk to a few of them and let them educate me, so to speak.  Finally, after hearing from and reading so much stuff, I decided to call a friend who was in the insurance business but retired, now. He recommended a few names of people he respected and should call. This proved most helpful as I was able to learn more and find someone local to deal with instead of people from all over the country trying to get my business. Ironically, it was a cold call I received one day from a very nice sounding lady with a local insurance agency that impressed me more than any I had gotten.  She identified herself and agency and simply ask if it would be alright if they mailed me some information about their Medicare Supplements Policies. I said yes, it was in the mail the next day, I liked what I read, called the agency and had a very good discussion with the owner.  Later he and I met in my home and I enrolled in one of the plans he represents.  What a weight off my mind to have that settled. The only other thing was to secure a Medicare Part D (Drug Plan).  That was pretty easy as I had already been advised by four different people the best one to chose. So I went on line and enrolled in the Drug plan.

Now that all of that is settled and done I have cleared my mind for the matters of actual healing.

Hematology/Oncology Dr Young Takes Charge

After Dr Young saw us on my first appointment on January 22nd we knew she was very concerned at my lower than normal blood counts. Even their clinic's blood test were not any better than others and a few levels were even lower. The White and Red cell counts were the most concern with lower than normal platelets, also. So Dr. Young discussed several diagnosis possibilities which sounded very scary but she wanted to have me get a Bone Marrow Aspersion and Biopsy. She said this test would give us a definitive answer and proper diagnosis. That didn't sound very fun or very good. She was very assuring but never wanted to say I was ok, because she knew I was sick. She wanted this test so we would know better what we were dealing with and, more importantly,  what treatment was best.

We were lucky to get into have that done the next day, January 23, 2014. I basically went under a local anesthesia and a "feel good cocktail" for the procedure performed by a woman doctor in the Baptist Hospital Colonades next door to the Hederman Cancer Clinic where Dr. Young is located. She tapped into my hip back pelvis area and drew out a small piece on my bone and it's marrow. The procedure went well with little discomfort.

The bad side of it was having to wait 2 weeks for the results. All the while my anemia is making me very tired and more susceptible to infection. We all agreed I needed to stay away from sick people by avoiding crowds. So I did and we waited.

Test Results - More Tests

The one thing about medical people is they love to test. The colonoscopy and EGD revealed a few polyps that were precancerous and were removed for biopsies. More polyps were found in my gallbladder or could be gallstones so Dr. Hogan, indoscopy doctor, referred me to consult with a surgeon. Also, he was very concerned about my low blood levels so he referred me to an oncologist/hematologist for further evaluation. Finally, he recommended I have a CT scan of my abdominal area.

When it's late in the year you've already met your deductible so why not make sure.  So Christmas time was full of tests and doctor visits. The last one I saw was in mid-January, Dr. Tammy Young, oncologist/hematologist, with the Jackson Oncology Clinic.

Physical Followup December 15th, 2013

In the two weeks between the 2nd and 15th, my urinary infection appeared to be better but I began to experience pretty bad pain in my right hip. By the date of my follow up it was very painful, almost as bad as when I had fractured my pelvis 6 years ago. However, that was my left hip and this latest pain was in the right hip. I didn't recall falling or doing anything to injure it other than my daily walks, one of which was 10 miles.

Dr. Headley confirmed my urinary infection was clear. He listened to my description of the hip pain and ordered an x-ray, the results of which showed severe arthritis in my right (good) hip. But as the days wore on in December the pain got so much worse, I figured I may have a fracture. Anyway, I reminded Dr. Headley about the need to do an additional blood work-up due to the low counts from 2 weeks before.

He had forgotten this until I remembered it but agreed we should do it to be careful.  The blood levels for all major categories had dropped again so now Dr. Headley looked very concerned.  That's low red, and white cells plus lower than normal platelets. Since I was also having more frequent acid re-flux he referred me for a colonoscopy and EGD exam.

Annual Wellness Physical December 2nd 2013

My journey started long before I went to see Dr. Headley on December 2nd of  last year (2013) for my annual wellness physical examination. Since that is a long story, I'll post about the ride I've been on at a later time. Sufficed to say, I was feeling good with no real major pains, hurts or noticeable new issues prior to December.

In fact, I was walking 3 to 5 miles per day and occasionally did 10 miles or more.  Since the MS Blues Marathon was a month away I began training for the Half Marathon part of the event. That's only 13.1 miles which I had walked on three or more occasions but never in a competitive event. So my goal was to walk 5, 6, 7 ...miles per day until I reached 15 miles (adding a mile a day until I reached my goal of 15).

I had last been in a 5K event in early November doing ok time wise by my standards. It was a rather cool morning (down right cold) so I struggled with my breathing in the first few kilometers. COPD was my main ongoing health issue so breathing is critical to good exercise like this. After my lungs got adjusted to the cold air and a few puffs on my rescue inhaler I did fine.

As the weather began to get more wet and cold throughout November I cut back on my daily walks to   about 4 days a week on average. I hoped to do the above training in Decmber so as to start off 2014 in good walking condition.

So Dr. Headley found a urinary infection easily treated by 10 day's of antibiotics. My blood counts were a bit lower than normal but not too serious. He told me to come back in 2 weeks for a follow up.