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Run for Chuck

Dayna Shearer — Fri, 06 Nov 2009 21:59:00 GMT

Hi

Below is an email from my niece who is a student/Asst. Crew Coach for Drake University. She is team member of triathonal team who is raising money for the Leukemia/Lymphomia Society. I was very excited to receive her email this morning. We are very proud of her and Chuck would be honored by her efforts......

For those who do not know, my brother Steven, Jaclyn's father is a "Cancer Warrior" of Lymphoma Non-hogkins for the past 25 years......we are blessed everyday that he chooses to stay with us.....

"I have some very exciting news, in a meeting with my senior team captains this morning some details have been changed for our "Run for Chuck" event. I gave them his bio that Aunt Dayna sent my way and it only went up from there. First, they do not want to run at 31st Living History Farms Off-Road 7 Mile race, they would like to create their own race, preferably a 5K on campus. This way they can get other athletic teams and student organizations involved! They are very excited about getting all of the details together to find the best way to get more people to come out to run with us and make donations for the "Run for Chuck". They have a meeting on Monday with the sports information director and athletic director to find out how they can get the event advertised for donations and participation.

I was very excited about their ideas and enthusiasm, and I hope you all are as well. The date is now up in the air, and details need to be worked out, so I will keep you all posted.

Lots of love, Jaclyn "

I will post more information as it evolves..........

Today, we had Chuck's internment at the North Myrtle Beach Gardens.......our (b/c some day I will join him there) Mausoleum wall faces the ocean. He/we would like that and he is very close to our home....It's all good.......

God Bless

Orange is the color

Dayna Shearer — Thu, 22 Oct 2009 10:55:00 GMT

We (the boys, Meg and myself) are going to honor Chuck by wearing something Orange (not Home Depot orange) next Saturday. Orange is the color of Leukemia cancer awareness and burnt orange/copper has become our signature family color. We invite you join us.
This is a time of mourning but also a time to Celebrate Chuck's life. It's a time to remember how he inspired us to "want" to be a better person and humbled us to "know" that we can.

See yu'all next week.....

Have a blessed day...

Love,
Dayna

Celebration of Life

Dayna Shearer — Wed, 21 Oct 2009 15:43:00 GMT

It was a beautiful fall afternoon when Chuck took his last breath, yesterday. He was not in any pain and we were grateful to with him when he passed.

There will be a memorial Service to Celebrate his life on Saturday, October 31 @ 11:00 am. The service will be held at Valley Forge Presbyterian Church in PA. We will be at the church by 10:00 am.

Coming to the end

Dayna Shearer — Tue, 20 Oct 2009 14:05:00 GMT

Hospice is finally on board and Chuck is on oxygen. He's had a high fever the last couple of days that we have been trying to keep at bay. It keeps going up and down.

Our goal is keep him comfortable so every few hours we work to get the "comfort" medications into him. His breathing is labored. All of the signs are evident that time is getting shorter....

The kids (who are all grown up) have been wonderful as we all stay vigil by his side. It's good to be together at this time. We all sit around him and just watch him breath. He wakes occassionally and it seems likes he's trying to say something but he can only communicate through his eyes, now. The boys talk to him often. They have been incredibly strong, Chuck would be proud of the how they are taking care of him and me.

He is our "Superman" and fighting to the end.....he will forever be in hearts...

Our sincere thanks to all of you for your loving support......

Saturday, October 17

Dayna Shearer — Sat, 17 Oct 2009 08:48:00 GMT

Chuck's "posse" (Damon, Jeff and Dennis) arrived early Thursday morning much to Chuck's surprise and delight. That was a "Good" day. He was energized in the love and laughter that always so "them".

As the "boys" came for him, Jeanine came for me.

She and my dear friend Robyn along with the "Posse" kept us entertained and feed. It was good, it was healing. It's been difficult to accept that after such a valiant fight to live, Chuck will be leaving us. He has not been in any pain since he's been home. He was smiling and talking "bikes' with his favorite people and he was happier than I have seen him in a long time.

By Friday, Chuck's declining health is more evident and he sleeps much more. He eats and drinks very little. We brought him out to the livingroom while we talked, ate and laughed. He seemed to be sleeping but I know he was listening to the laughter and stories. He was absorbing the spiritual nutrients that his body and soul needs and craves, right now.

At the end of the night, the boys put Chuck back into bed and said their "good-bye's". It was heartbreaking.

Chuck had a peaceful night as he no longer uses the bedside commode. He is restricted to the bed, now as he grows weaker. He is finally getting his much needed rest.

It is said the reflection of a man's character can be determined by the kind of people he surround himself.

That is so true of our dearest friends and family, who have been exceedly supportive and loving through this very challenging journey. Their steadfast devotion has given us both strength and courage.

With all of my heart, I thank for the gift of "you".........

Monday, October 12

Dayna Shearer — Mon, 12 Oct 2009 23:46:00 GMT

Today is Chuck's 47th birthday.

The last couple of days have been aweful for Chuck (and me), so much, that I've a difficult time dealing with it all let alone writing about it. The pain has gotten to the point that Chuck spends most of the time heavily sedated with pain meds and anti-nausea medicine. He hasn't been able to keep much of anything down for days and everything goes right through him. What we were using for the anit-nausea before no longer is effective for Chuck. This new medicine makes him very sleepy. He is still on the TP line but not absorbing much nurtrition. His feet and legs are swollen because of it. They suspect that Graft -vs-Host Disease is flaring up and it's obvious that the BK virus is still active. It's like being in terrible holding pattern with hope of braking it....

There has been a difference on opinion from the doctors as what our next step should be and because I am finished with the politics of this nightmare; WE are going to take him home tommorrow with "Home care". Should the need become apparent, we will call in Hospice but for now, we will continue to take things one moment at a time....

Our goal is to keep him as comfortable as possible.....

Thanks to all the birthday wishes........

Dayna

Tuesday, October 6

Dayna Shearer — Tue, 06 Oct 2009 10:59:00 GMT

I wish there was something positive to write about Chuck and his that quality of life has improved. But there is not and It has not. I spend hours just watching him breath b/c I am afraid that I will miss his last breath.

Yesterday was another aweful day for him.

They had snowed him with pain meds over the weekend and in attempt to convert the pump meds to pill form; their recommendation on the dosage seemed "over the top"; we wanted to be more conservative considering what he was on when I had admitted him. What no one tolds us was that when the dosage is decreased more than 50%, Chuck would go into withdrawl. So, he had a miserable day of dealing with that and no one enlightened me until late yesterday as to why he was so ill. As a result, for the next couple of days, we have feed him enough pain meds to brings his tolerance level to where his body is comfortable THEN cut back

I know this has been and continues to be difficult for all of us. It seems so unfair and for yu'all who have stayed with us and followed this past year, I hope you take something "positive" from this experience b/c I can't believe that Chuck's life has been in vain. There are times when seeing something "positive" can be clouded but it's there, you just have to recognize it for yourself.

I have learned about "Fortitude, hope and faith" and how they change/evolve through life's most challenging times.
I have learned to be humble and to find comfort in company of loving and supportive people. How to lean.
I have learned how to open my heart and mind to a world where people find hope in a day where they are able to a step without assistance or a breath without oxygen.
I have learned to live one moment at a time.
I have learned there is a greater plan for us then we had planned.
I believe and trust that God has a plan for all us and that he will keep us in his Grace.

There is a song that I heard recently that I can't seem to get out my head. I wish that I "tech savy" enough to download it so yu'all can listen to it but it's "In this Life" by Collin Raye.

Chuck had a quiet night and slept comfortable though he has started a low fever. We will have to wait and see what the day brings.

Remember to give your honey and extra hug today....

Sunday, October 4

Dayna Shearer — Sun, 04 Oct 2009 12:55:00 GMT

The past couple of days have been very difficult and stressful. We have been faced with some difficult challenges and decisions.
Yesterday was not one of our better days. Chuck has some setbacks which caused him much discomfort that required alot of Dialatta. That is always a bad thing all around.

He has not been able to urinate through his bladder since last monday and he's had cronic diareahh so his body is not absorbing some of the medications.

Our objective is to manage his "cronic" pain with extended pain meds and something for his "acute" pain. They realize that the pain in his kidney is "nerve" pain and have him on Lyrica. It's takes a few days to get into his system but meanwhile, it makes him "loopy". Our hope is that the Lyrica will lesson his pain and he will need less naroctics for pain relief. In order to get him prepared for home, they to adjust the pain pump meds so that it would equal his his "Oxy" extended meds so they make a fair evaluation. Kind of a "apples to apples" comparison.

I have made it clear that we still want to take Chuck home. WE will still make our visits to the clinic but we also want to be able make one of those vist in MB instead driving down to Charleston 2x a week. He can get labs and infusion there as easliy as Charleston.
They were a little reluctant at first but understand that after a year of this, we need to go home. And more importantly, this is OUR decision. We can still get home care and in extreme situations we can go to the local hospital who will transport him back to MUSC should the need arise. They have agreed to our wishes and will help set things up. The team is very sympathic to Chuck and have come to care for him.

Our biggest obstacle is that the bladder is still ill and he is so suseptible to infection. Because of his low immune system there will always be a risk of infection. There has only been 2-3 weeks between infection since June when they put the tubes in. The body recognizes the tubes as foreign and that generates the infection. We are hoping that he will tolerate being on Chipro, now. This may help.

Since, the GVHD appears to be better, they continue decrease his steriod and immunesuppressants.These too make his feel very shaky and fatigued bu they tell us it's progress.

Alittle new development, a doctor from 'infectionist disease" came to us and said that a blood culture they took a couple of days ago grew a bacteria that they have not been able to identify the "species". That "freaked" us a bit, I have learned to not respond until I actually hear something from our Doctor.

Wishing yu'all a blessed day!!

Thursday, October 1

Dayna Shearer — Thu, 01 Oct 2009 22:56:00 GMT

Today was better. I was able to get some answers and direction. Chuck's procedure went well, they have hooked back up to the PCA pump for pain meds and 24/7 TPN nutrient line. The objective is to keep him comfortable and his pain managable.

WE have an appointment with a pain management specialist tomorrow. They are thinking that some of the pain is "nerve" pain and they can block it. Where were they 3 months, ago? But better late than never and hopefully someone will make a note to consult "pain management" when a patient needs the kidney lines. This is a learning hospital......

We will be staying here for the weekend then early next week arrange for some home care. We are going home. We will still need to visit here at least once a week but he can get labs and blood products back in Myrtle Beach.

This is a good thing and we feel the right decision for all of us.....

Thanks for checking on us...

Wednesday, September 30

Dayna Shearer — Wed, 30 Sep 2009 21:24:00 GMT

Feeling very frustrated with what is and what is not happening here this time. As it turns out, Chuck has 2 separate infections to be treated. It's been a bit of a "cluster".
I told them whoever comes through his door better have their "game on" b/c I am way past "ankle " bitting and going straight for their A--.

In all fairness, the nurses are doing everything that they can for him and have been their usual wonderful support.

Tomorrow, they are suppose to take him down to IR and change out his tubes. There has been complications with keeping his platelets at a safe level to do the procedure. His body is just using them has fast as they are giving them to him. He is very weak.

Thanks for checking in on us........tomorrow has to be a better day...

Monday, September 28

Dayna Shearer — Mon, 28 Sep 2009 15:27:00 GMT

We had a wonderful visit with Damon, Kellie, Cheryl and Crystal on Saturday. Chuck said is it was good to laugh. Damon is always good for a story or two about his little girls that always brightens our day.

Mom and Brandon were down Sunday to watch the Eagles with us.

Unfortunately, the pain in his kidneys increased considerable over the weekend. He started with a fever over night.

As we mark the "1" year, he will be admitted back into MUSC with another infection. They feel it will only be for a couple of days as they get it under control with antibiotics. They tell us that his both his kidneys and liver are improving. That they are encouraged by his "counts" so they will continue to cut back on the steriods aggressively.

That all sounds great but I still see Chuck struggling to get through each day with pain and dispair. I find it hard to stay "cheery" as I double his pain med dosage so that he may have 1 hour of sleep before he needs to get to the bathroom. That is our days and nights, one hour at a time........

Authentic Success

Dayna Shearer — Sat, 26 Sep 2009 12:21:00 GMT

Shortly after Chuck was diagnose last year, I found out that a former co-worker back in PA was also diagnosed with AML Leukemia. Glenn was and is always a "team player" and incredibily supportive. He is blessed with an incredible wife and family that have been inspirational to their circle of people through this journey. Glen had not one but two stem cells transplant and is presently in day 55+ of the most recent.

Below is a reading that Amy (his wife) had shared on their blog that I found to truly inspiring. I thought that it was worth sharing with all you.

Authentic Succes....

"Authentic success is having time enough to pursue personal pursuits that bring you pleasure, time enough to care for your home, tend to your garden, nurture your soul. Authentic success is never having to tell yourself "maybe next year." Authentic success is knowing that if today were your last day on earth, you could leave without regret. Authentic success is feeling focused and serene when you work, not fragmented. It's knowing that you've done the best that you possibly can, no matter what circumstances you faced; it's knowing in your soul that the best you can do is ALL you can do, and the best you can do is always enough.

Authentic success is accepting your limitations, making peace with your past, and reveling in your passions so that your future may unfold according to a Divine Plan. It's discovering and calling forth your gifts and offering them to the world to help heal its ravaged heart. It's making a difference in other lives and believing that if you can do that for just one person each day, through a smile, a shared laugh, a caress, a kind word, or a helping hand, you are blessed.
Authentic success is not about accumulating but letting go, because you already have all you need. Authentic success is feeling good about who you are, appreciating where you've been, celebrating your achievements, and honoring the distance you've already come. Authentic success is reaching the point where being is as important as doing. It's the steady pursuit of a dream. It's realizing that no matter how much time it takes for a dream to come true in the physical world, no day is ever wasted. " Sarah Ban Breathnach

This experience has opened my world to many things. I have learned and been inspired by people who have different types of cancers and their unique ways of coping. It seems that no one is exempt by this on some level. My observation that we all have learned something about "inner" Strength and Fortitude.

May God's love and light continue to bless upon Glen and his family....and Thank you for your gift of grace.

Dayna

Friday, September 25

Dayna Shearer — Fri, 25 Sep 2009 23:31:00 GMT

Chuck had another difficult night added by tending to the TP line. I appologize for being unclear about the nutrition line (TP). Originally, the doctors spoke to us of options for the nurtrition source. One being, inserting a tube directly into Chuck's belly, another would be just hooking him up through his pick line in his arm. Both have options have pro's and con's but b/c of his pain in the belly area they opted for the pick line which was a relief.

Today didn't go as expected. WE got to the IR early in hopes to they would find the source for his kidney pain. Because his platelets were low and a scan showed no evidence of anything out of ordinary, they decided to wait another 2 weeks before they change the kidney lines. This leaves us with no real answer for the source of his pain other than, his body is just so sensitive to them along with the virus factor.

We now have him on 24/7 pain medication. His appetite is almost non existing and he eats less every day. They do continue to decrease his steriods b/c they tell us that his liver is improving but the result of decreasing the steriods is even more fatique. He can not walk without assistance and is very unstable on his feet.

WE ended up back in the clinic with more blood and plateletes. We decided it would be best to stay close to the hospital this weekend.

Damon and Kellie are will be down to visit tomorrow. It will be nice to spend some time with them...

PS... Happy Birthday Karen!!!

Remember to live in the moment.......Dayna

Thursday, September 24

Dayna Shearer — Thu, 24 Sep 2009 21:05:00 GMT

Well, I learned something new today. The doctors decided that it would be best to start Chuck on the nurtrient IV (TPN) line tonight.Chuck weighed in at 103 pounds this morning. We were at the clinic by 7:30AM. He is still dealing with the "C-Diff" bacteria that is causing severe diarreah thus his body is not absorbing nurtrients. Another culture was taking and results tomorrow will tell them if they need to change the medication.

The team arranged for home infusion to deliver supplies to the lodge and a nurse came by this afternoon to show me how to hook up the solution through a pump and into Chuck's IV line. "Piece of Cake". LOL!
The TPN doesnt' require an IV pole. They come with a pumb and a backpack that allows for portabliity. The line is programed to run over night (12hrs) which should take some pressure off of Chuck though he will have to drag this bag to the bathroom with him every time he gets up. Nothing ever seems easy but this is still better than being in the hospital so we are grateful for the little things in life.

Chuck had a painful and sleepless night. The doctors' think that there may be leakage around the lines even though they are draining that could be causing pressure and pain in the kidneys. He has an appointment at 7:30 AM tomorrow at the "Interventional Radiology" (IR) where they evaluation the lines and situation. I am hoping they can do something to give Chuck some relief....

Regardless to how tomorrow's procedure goes, we will be staying the weekend in Charleston. He is very frail and I don't want to risk being too far from the hospital....My energies are about keeping him as comfortable as possible.

Thanks for checking in on us.....

Wednesday, September 23

Dayna Shearer — Wed, 23 Sep 2009 23:23:00 GMT

Today was a "down" day. Chuck was up most of the night as usual but now he tries to make sure he eats or drinks something as much as possible. This has become another stress that he doesn't need. He really doesn't want to have another tube in him but I fear it may be our only solution; if only temporarily.

The bladder is flowing clear today due to the Amicar but he still has pain when he relieves himself. The BK is cycular and the bleeding will return. The days just don't change.

The bladder is better, well there is less blood/clots but the lines are still problematic and painful. He was hit with severe kidney pain late this afternoon and we were able to get it under control with meds. Giving him pain meds and judging what and how much to give him, weighs heavy on me. I am always in fear of over medicating him.

The hospital has better drugs but I hate to take him there for fear he would catch something else. If things don't improve, we may not have a choice. We are back to the clinic early tomorrow AM.

Thanks for checking on us.......

Tuesday, September 22

Dayna Shearer — Tue, 22 Sep 2009 23:49:00 GMT

Today was a better day at the clinic. Chuck recieved platelets and blood and is doing better. The doctors talked to us a length today about how every thing he is feeling (the extreme fatigue and lack of appetite) is normal for what he his body is going through. To date there is still no evidence of the Leukemia.

They did share that they are concerned about his lack of nutrition and not gaining any weight. He weighed in around 105 pounds. They understand that he has many reasons for not having any appetite, not able to eat, etc....but since everything else is improving, his nurtrition is a concern. Their suggestion is feed tube in his stomache where he would get an Ensure type solution directly into his stomach.

Understandably, having another tube inserted anywhere in him doesn't appeal to Chuck, so he is going to make more of an effort to consume calories; atleast, as much as he can. Time will tell......and the feed tube maybe a temporary solution enough to help build some strength....

In addition, they have given him a Lanacane type of pad to put on the kidney sites to help numb the pain. We are going to try one tonight to see if it helps .........cross your fingers...

Thanks for checking in on us......

Dayna

Monday, September 22

Dayna Shearer — Tue, 22 Sep 2009 01:06:00 GMT

Though it is wonderful to be home. Chuck continues to have a difficult time of things. He grows weaker each day. Adjusting the medications have stirred things and left him feeling very fatigued. He eats less every day.
We head back to Charleston/clinic tomorrow and see what develops from there.

Thanks for checking in on us......

Friday, September 18

Dayna Shearer — Fri, 18 Sep 2009 23:35:00 GMT

We are excited to be home until Tuesday....we have been waiting so long for this moment...... we are hoping that he will only need to visit the clinic 2x weekly so we can just make "day" visits and go home.

Chuck is doing real well as we continue to wait for the bladder to heal. We stopped at the shop today on the way home and he was excited to back there.

I am truly grateful for every "good" moment that he has. It's just been so long.....

Thursday, September 17

Dayna Shearer — Thu, 17 Sep 2009 23:26:00 GMT

Its' amazing what you learn to do when necessary. Both of Chuck kidney lines leaked at the connection valve. I made a call to one of nurses and she told me that sometimes the surgeon leaves the stiich too long and it causes the valve not to thread securely.

Sure enough, I had to disconnect the valve from the line that goes directly into his kidney and there was a black thread. With very fine scissors, I was able to snip the thread and reconnect his valves. YEAHH!! no more leaking.

At the clinic, I am having them change all of the exterior lines and bags every week. I think this will help keep the infections down. He will have the internal lines change every 4 weeks.

Chuck is doing really well the last couple of days. The bladder medicine is doing what it needs to do while his bladder continues to heal.

We have started to finally cut back on some of the meds but it makes him very fatigued. They tell us this is normal to expect it.

It's crazy he takes meds to address the side effects of other medications. But it's progress, he is down to around 55 pills a day depending on what is going on...Some need to be decreased gradually while others can be discontinued as the symptoms disappear...

If all is good with his counts, we are out of here for the weekend. We are very excited about going home. We are actually thinking that we will need to room at the Lodge only for another week. If his visits at the clinic are down to 2x week then we can just travel down here for the visit and he can come home.

Monday, Sept 14

Dayna Shearer — Mon, 14 Sep 2009 21:19:00 GMT

We had a great weekend and back in Charleston. Chuck's counts are all good today at the clinic. The doctor even said if he continues to do well all week, he can go home for the weekend with their blessing. LOL!
All is flowing good, the colors are good and the pain minimal, he is doing well.
Since, starting the bladder medicine again, his appetite is gone but we can work with that...

I am grateful for every "good" moment/day that we have and count each one as a blessing.