Chapter 14 – Blessings in Respite

‘Cause what if your blessings come through raindrops Why%20do%20raindrops%20falling%20on%20a%20windowpane%20not%20always%20run%20down%20straight
What if Your healing comes through tears
What if the thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

-Laura Story “Blessings”

October 29, 2014–The first thing he said to me this morning was, “I love you,” and haltingly, “My mind is OK.”

Was it? Maybe there was more going on in his mind than what I could see. Was it like a stroke? Was he trapped in this state, wanting to tell me he was fine, but not able to prove it?

Maybe seeing familiar places would be help him, so we drove by our former church.  He just stared.  Nothing clicked.  He always enjoyed watching the ducks at Fairview Park.  Nothing.  The donut, he enjoyed!  Filling out the handicap sticker application was a bust, but it kept him busy.  For some reason he wanted to write his sister Elaine’s name, so I wrote it.  That way he could copy it.

I had called Janae, our oncologist nurse, and told her that Roger had really declined. She returned my call and below is an email to the kids with my thoughts on her response.

Dear Kids,
I stumbled across several things on the web yesterday that have gotten me thinking. Janae, the oncologist nurse, didn’t seem too worried about this sudden turn for the worse in Roger’s mind. And then I read that it is common for “executive function” to get worse after treatment—because of the treatment.  
I just wonder if it will get any better.  Can you get your memory back?  Can you get speech abilities and problem solving abilities back?  
Where I am going with this?  I am wondering if things will be even worse after more chemo.  Or will it stay the same?  
To be objective, I can live with him being like this. It’s not horrible when I think of what it could be. But if the treatment makes him any worse, what is the benefit?  His quality of life is not good now, but it is tolerable. (Actually, if you think of it, there really isn’t a lot of quality to his days, but he is still a living soul, breathing and thankful to be alive.). 
But if it gets worse, then what?  Will he get worse just to stay worse?  (Odd way of saying it, but I think you know what I mean.) And then what do we do?
I have debated about this next treatment. Con: What good does it do?  PRO: It is the standard of care to prolong life.  CON: Will it make him worse?  PRO: Research says that this is the best route. 
I guess I need to be patient to see what the next MRI shows, but I think we (Lance) (and everyone else) need to have an opinion about what we want for daddy. If things are ok, they will want to give him the pill bottles before we leave. 
(To the reader:  This is a little ahead of the story, but you need to know that the standard treatment involved 6 weeks of chemo and radiation and then an MRI. Those results would determine if more chemo would be given–five days a month.)
So, I guess I’m just getting thoughts down in black and white so I can see them and you can see what I am mulling over.  

Lance was coming home for fall break, and I was doing a happy dance. He was going to spend a week with us, and it was just what I needed. Roger continued to need more care, and although it wasn’t unpleasant, it was difficult. I needed respite.

Re·spite noun \ˈres-pət also ri-ˈspīt, British usually ˈres-ˌpīt\:  a short period of time when you are able to stop doing something that is difficult or unpleasant or when something difficult or unpleasant stops or is delays

I mulled over who I could get to stay with Roger while I was at the airport. Two dear friends agreed to help, and they came by one afternoon to get the “lay of the land.” Floyd and Phyllis Gruen: the angels;  Glenda: the freed one.

It was exhilarating. What do you do when you can go out alone, shedding a constant responsibility? You go to Walmart, of course. I picked up some things, non-essential items I’m sure, and realized that this breather was vital to my mental health.

That evening I had a State of Grace rehearsal at our house. It was nice that Roger could hear us sing.

I awoke at 12:30 AM, and I regretted not emptying his pouch because at 4:00 AM he had an interesting blow-out with his ostomy bag.

I heard him get up and when I looked, there was poop all over the floor and on the toilet. He was standing there, holding his pouch. I think he tried to empty it, but he didn’t hit the toilet and it was a huge mess.

I jumped up and told him to stand still. While he held the pouch, I began to wipe up the poop. It had splattered a lot, and little by little I found frustration rearing its ugly head.

Roger couldn’t understand or take commands well, so trying to get him to move, or let go, or wash his hands was hard. He couldn’t move his right leg. Maybe it was because he afraid of being off balance. I don’t know. But I could barely get it ½ inch off of the floor. Finally, I got him stripped down, and washed.

The base attached to his skin was fine, so I just replaced the bag.

I mopped–I wiped–I put the clothes in the wash. Then I started counting my blessings out loud.

  1. A tiled bathroom floor for easy cleanup
  2. A large bathroom for ease in moving around
  3. Throw away Depends.
  4. A washing machine at my disposal
  5. A new toilet that flushes easily
  6. Knowledge of how to manage the ostomy bag
  7. No job that I had to get up for in the morning
  8. One more blessing I shall not ever forget: Even in late October as I typed this journal entry, Roger lifted his hand toward me. I reached for it. He pulled my hand towards his lips and kissed it. He couldn’t verbalize much, but in his heart he still appreciated me. I cried. I was thankful. I was blessed.

I had met a new friend on Facebook when we discovered her mother and my husband had the same brain cancer. Her mother had died, and the visitation was on the night I was to pick up Lance from the airport. Floyd and Phyllis came early to stay with Roger while I went to the visitation in a nearby town. I didn’t look forward to going through that line. Giving my condolences to someone I had never met was difficult enough.  But I was also keenly aware that unless a major miracle happened, my turn would come to stand in her place.

I’m glad I went. We were strangers in that glioblastoma storm, but oddly bound together with cords of fear, wonder, comfort and trust.

Seeing Lance as he arrived made my heart so full. It was wonderful to see him. We talked continuously all the way home.

I wondered if Roger would recognize Lance. Phyllis had said she thought Roger was a little bit restless because he didn’t want to go to bed until Lance and I arrived. She said Roger made the bed, unmade it, made the bed, walked around, and finally sat on the bed. She asked him if he wanted to pray. Roger prayed and she said it was just like he was at church. He prayed for people. He prayed for Salem. He prayed for his family. I loved hearing that.

Before we went to bed for the night, Lance hugged Roger. I asked Roger if he knew who he was. Roger said, “He’s a gift.”

We cried.

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Posted in Blessings, Brain Tumor, Declining, Glioblastoma | 4 Comments

Chapter 13 – Getting Worse and Not Seeing the Signs

638186313Each day got worse.

When you are living in real time, things obvious to the outsider are not so clear to you. I know I was still afraid and frustrated by not knowing exactly how things would progress, but I think back and realize that I was oblivious about how much he was declining.

By October 25th he was sleeping more, eating and drinking less, which meant urinating less. He had slurred speech, or no speech. I found that he would prefer showing what he wanted rather than speaking it. His hands became very shaky—even tremor-like. When he did any activity, he became breathless.

I am currently part of a closed Facebook group for people or caregivers struggling with glioblastoma. As I read the posts now, I can see that Roger had many symptoms that I did not recognize. I’m still not convinced he had a stroke, but his tremors, lack of speech, shuffling, and sleeping makes me wonder. I do know that the tumor was invading and wrapping its hideous fingers around his brain.

Mindless activities kept him occupied for hours on end. Cutting apart a card and taping it together, copying information from his wallet, lining up coins in rows—they were all similar routines from life before the tumor. Just not purposeful.

I was thrilled that Chad, Stephanie and the kids were able to spend a weekend helping me and watching Roger. I felt such a relief with their presence. I didn’t feel alone.

Happy to walk with Steph

Happy to walk with Steph

Stephanie and I walked two miles; it was refreshing to get out of the house and do physical activity.

While I was at a concert, Stephanie thought it would be good for Roger and Lance to Face Time. When Roger saw Lance’s face and heard his voice, he really perked up. He told Lance that he should “stop drinking, stop meditating, stop thinking, and stop conversing.” Roger actually became agitated, and Stephanie thought it would be good to stop the call. Roger immediately wanted to get Lance back; he couldn’t figure out where he went.

So hard to leave

So hard to leave

It came time for Chad and Stephanie to leave, and that was difficult for them. Questions like—will we see him again alive—will we make this trip again sooner than Thanksgiving—raced through their minds. It was hard for me, too. I was losing some sort of security with their presence in the house.

I had another scare. On the day Roger was to have routine bloodwork, we got up, and I fed, medicated and dressed him. On our way I decided to run in and get a polar pop. Ii thought, “What could happen in that short of time?”

When I came out of the gas station, what did I find? Roger sitting behind the driver’s seat. He was ready to drive to the pump and get gas. That was just another sign pointing to my new life with an adult who was like a toddler. I had to watch him every minute! And though I could pick up and carry a toddler, I could not budge a 225 pound adult. I didn’t know if I would be able to get him out of the house for the next blood draw.

Something I never thought I would have to do:

I shaved my husband’s whiskers.

Oh my. I have repeatedly said through all of Roger’s health issues that I AM NOT A NURSE. I get squeamish at sores, blood, stitches, etc. But his beard was getting too long; I had to do something. It’s funny what you can do when you have to do it.

Medicine. A new problem. Like I said, I’m not a nurse, but I do know some nursing stuff. Most medicine should not be chewed. Especially timed-released ones. By the end of October he was starting to either chew his pills or hold them in his mouth. So I started giving him his pills in stages to make sure he swallowed them.  It thought we were doing great until he spit out his Bactrim in the toilet. I made a mental note to ask the nurse what to do.

His eating routines started to get “odd.” He would organize his food. And ask for more plates. And rearrange things. He didn’t want his food to touch. In fact he became a neat freak, which, as many of you know, was so not like him.

He paced. He was restless. Especially when I was tired and wanted to lay down. Another worry. What if I was tired, and he wanted to be awake and roam? How long can I do this without any supplemental help?

Sometimes He holds us close
And lets the wind and waves go wild
Sometimes He calms the storm
And other times He calms His child

–Scott Krippayne, from Sometimes He Calms The Storm Lyrics

 

 

Posted in Brain Tumor, Getting Worse, Glioblastoma | 4 Comments

Chapter 12 – It’s Coming and There Is Nothing You Can Do To Stop It.

dsc_0168aThe Train Wreck Is Coming

Pardon the digression from the storm analogy, but this quote fits this blog perfectly.  Shauna Emmons shared this on a site I frequent, and I asked if I could share it.  She said yes.

Healing and Restoration

We are standing on the train tracks and a train is coming and there is nothing I can do to brace myself or my kids. I’m watching it head straight for us. Others are watching it head straight for us. They know it’s going to run us over and they want to yell, scream, help….but none of us can do anything but watch it run us over. We will get up again, we will pick up the pieces, but for now all we can do is stand here and wait for the freight train to destruct us. It will destroy pieces of us, taking away parts that we feel like we can’t live without. There are no options but to be run over and feel destruction. As hard as I try to prepare or to be ready, there’s nothing I can do to truly prepare for impact.
So I see that look in so many people’s eyes of “oh honey, you don’t even know what’s coming” when I sit here with a smile on my face saying we will be ok. I’m not naive, I know it’s coming. I see it coming too, and it terrifies me. But I also know there’s no way to brace for impact. So it will have to run us over. We will feel the destruction and our world as we know it will crumble around us. And then we will pick up the pieces, and we will survive a day at a time in the dark until we are able to see the morning again.”

My days become dark and scary; but there is still a little humor.

On October 18th I emailed the kids a description of what happened when I left Roger with friends to take care of him.

Kids. You know I was concerned and scared about my concert at 4:00 pm (2 hours away from home) and having to leave daddy from 12:30-9:00 pm. Well, it went just fine and I shouldn’t have worried.

I asked Dave S. and Bill F. if they could sit with him, Dave first, and Bill when he got off his bus route. So with the fear and concern of a mother leaving her baby for the first time, I left. Boy, was that an odd feeling.

Dave got there and Roger was sleeping, so I explained routines to him and we left. I had left phone numbers for someone to text during the concert just to let us know that things were OK. On our way back home at about 6:30, Carol gets a call. It’s Bill. She couldn’t understand him so she handed me the phone.

Apparently Roger and Bill had gone to Bill’s house to let Bill’s dog out, and when they came back to our house, they found they were locked out. Daddy doesn’t usually carry his keys. So, I calmly (chuckling inside) told Bill that he could use the code on the garage and get in that way. Bill said OK. I told him to call if that didn’t work.

Forty-five minutes later, we get another call. Roger and Bill couldn’t get the garage door open. So, I told Bill that Roger had hidden a key in the old shed on some nail, and described where he could find it. 

(Roger always hid important things in a cryptic manner. That was how he rolled.)

While I was listening, I could hear daddy looking for it with Bill using his iPhone flashlight to guide him. No luck. So I said I would call our neighbor Sally. She had a key and was close. Sally said sure, she’d be glad to come. Then I call Bill and say Sally is on the way and he said, “Don’t worry. We are in the house now.” I guess they had found another key that we had hidden. Sally came, and they all had a good laugh

We chuckled so much on the way home. I said to Gary that I remembered expressing some concern about leaving Roger with Bill for another concert (it got cancelled), and Gary said, “I don’t see why you would be concerned.” HA. Last night he said, “Bill can watch Roger, but now who are we going to get to watch Bill?”

Anyway, I got home and Bill had done the dishes. Roger had slept a lot, but he was awake and seemed none the worse for the adventure. I really appreciated Bill’s help.

~~~~~~~~~~~~

When I look through my journal, I am amazed that I wasn’t a total basket case. Roger’s mind kept getting worse and worse, and though I kept it together for the most part, I felt that the crash was imminent.

  • He thought he was making pancakes with someone and flipping them in the air.
  • He questioned current events.
  • His sense of time was unstable.
  • His sense of direction was off. (Turn here. Why are you going this way?)
  • His sense of who was in the house was bad. (Where is Lance?  Is Bruce ok?)
  • His sense of recent past events was off (Did I shave? I just washed, didn’t I? I took my medicine, didn’t I? I think I just emptied my pouch.)

And life was interesting when there was only one driver, two adults, and one couldn’t be left alone. We took the car to Bob Ridings for service, and then the service driver drove us home. I got a call—it was a wheel bearing. But they couldn’t fix it until the following week, so the driver came back to our house to pick us up. Then I had to drive us back home.

One night our daughter Lisa face-timed with us, and I began to realize two things.

  1. There was no one in the house to talk to. Granted, Roger was there. But it was so hard to have a conversation with him. I initiated it. I carried it. I explained things. If he talked, it was for clarification, like, “What day is it?” “What time is it?” “Where do we have to go?” “When do we have to be there?”
  2. There was nothing to do. I actually NEVER thought I would say that. Well, there WAS a lot to do; I either didn’t have the initiative to do it, or I couldn’t do it because someone would have to watch Roger. At this point I wondered how widows managed? I mused that they probably just got out and did what needed to be done.

~~~~~~~~~~~~009

I don’t have any pictures for this blog entry.  Maybe a glimpse of us on our wedding day will let you see what we looked like 43 years ago!

~~~~~~~~~~~~

We kept a routine appointment our Primary Care doctor, and as we sat in the waiting room, I was feeling sorry for myself. A woman came in with her husband in a wheelchair. She was so loving to him, and so kind and patient. He was pretty impaired, and it struck me that my problems were nothing compared to hers.

As we talked to the doctor, I broke down and sobbed. Roger was sleeping in the chair next to me, and she asked how I was doing. Tears. And more tears. I told her I knew that this was not as bad as it was going to be, but sometimes I felt so overwhelmed. And that day was one of those days.

We left the doctor’s office and had lunch at Dairy Queen. He told me how he was riding horses, and how hard it was to get them out of the barn at DQ

I asked him, “What is going on in your mind?”

He said, “I’m just trying to figure out my mind.”

He asked me to go back outside to get Mrs. Weldy.

I asked him if he knew who I was.

He said, “Yes. You are Mrs. Weldy. But aren’t we going to go get Mrs. Truex?”

He was rapidly declining; even the way he held his mouth was different.

That night he laid down to rest, and I kissed him. I cried some more, and sobbed and sobbed.

I was so afraid.

I felt alone.

I didn’t know who to call.

I was scared.

 

 

 

 

 

 

 

Posted in Brain Tumor, Declining, Glioblastoma, Train Wreck | 7 Comments

Chapter 11 – Plan and Build Your Life on THE Rock.

peanutsThe sermon this morning was on building.  Building your life.  Making a blueprint of your goals.  Having the right foundation.  Maintaining the building.  The reference was Matthew 7: 24-27.  Pastor Derek’s quote struck me:  “Know storms will come; if you don’t acknowledge that fact, you will be blown away with the storms of life.  It is so much better if you have a plan.”

Roger and I had prepared the best we could for storms in our lives. We didn’t go into marriage thinking everything would be like a fairy tale.  Well, in retrospect, I think we did. All newlyweds think that way.  But we soon adjusted to the real world and learned from our mistakes.  Now in this storm of brain cancer, we followed the plan.  Six weeks of radiation.  Forty-two days of chemotherapy.

The end of radiation

We first heard the bell ring while we were waiting for Roger to get his initial lab work done.  We didn’t know what it meant, but figured after the group applause, it must have meant the end of something. And I mean end in a good way.

We continued to hear the bell ring periodically while we sat in the waiting room for radiation treatment.  Some people used it as a photo op, others just rang the bell and walked out.  If there was a big group in the waiting room, the applause was almost like what you would hear when the star player made a touchdown.  If there weren’t many people, the tiny group would still clap their encouragement empathetically.

It is the bell that binds strangers to each other. Here we clap for a person who we don’t know, but is tenuously connected to us through a potentially deadly disease–a disease that has the same result but often with different routes.

We had finally reached our “end.”

On the way to St. Louis for the last radiation treatment I got a phone call from Ruth in the liver transplant office. I thought she was calling to tell us that his prograf levels were high. Lisa had spent the weekend with dad, and on Monday morning he got up early and took all of his pills. That was the morning he was supposed to have blood work done. He wasn’t supposed to have taken the prograf.

No, her news was that creatinine was 4.0. She thought that the renal people would want him to be admitted to be hydrated. She told us to tell the radiation doctor after we met with him and see if they knew anything about him being admitted.

Sure enough, that’s what they wanted. So we went to admitting and actually had a great experience getting registered. The registration clerk and I just clicked, and for some reason I mentioned to her the videos that we had done about Hospital Time Ain’t Real World Time.  She looked it up on YouTube, played it, laughed, and shared it with her coworker.

I told her that she could look on rogerweldy on YouTube and see the other funny videos that we had made.

WIth Intake Clerk pringlesThe next day there was a knock at Roger’s door. I looked up and saw a can of Pringles attached to a hand. She peaked her head in, and I laughed and laughed. She had watched our video jingle about shingles and brought me a can of Pringles.

 

We had another visitor from when Roger had his colon surgery. She was the colostomy nurse and helped us so much at the beginning of that adventure.   We weren’t sure why she checked in on us, but it was a pleasant surprise.

We were a little bummed about having to spend more time in St. Louis, but I figured that things work for our good. For example, I got to see my sweet little granddaughter Savannah. This certainly isn’t what we expected, but we were glad that we were able to take care of this “bump in the road” while we were at Barnes.

P.S.  I sure was glad I left underwear at Jess’s house!

Sleep. It is what we do. Or rather what he does. He sleeps.  All. The. Time.  He sleeps in the car, in the wheelchair, everywhere!

I got a phone call from Jessica on Sunday morning about Scott. He was having abdominal pains and the urgent care doctor suspected appendicitis. Sure enough, he had an emergency appendectomy on Sunday afternoon. It was fun to see Roger, the expert, showing Scott, the novice, all of the in’s and out’s of hospital etiquette and procedures!

He slept the majority of the time after his chemo and radiation. In fact, he would sleep all night if I didn’t wake him to empty his pouch. And I found it was more of a struggle to get him up from a seated position. He appetite decreased but his weight increased

On October 14th, I sent this email to the kids and Roger’s sisters.

Family,

Yes, His mercies are new each day. Elaine, I thought of that same verse when I verbalized that I was so weary. Just wait on the Lord.

Kids….this will be wordy, so either scan or wait for the Cliff notes!

So, we got home last night and slept pretty well. Actually Daddy sleeps so good that I have to remind him to get up and empty his pouch! So, it’s just a little like having a baby who needs to be fed or diapered. But it’s much easier than that, really. And I usually get up once or twice to go to the bathroom, so it’s not bad.

We started out going to Scott’s on Sunday afternoon. Eva, I don’t know if you know, but Scott had an emergency appendectomy, and since we were going to STL on Monday for a slew of appointments, we went early to care for the kids if needed. Everything worked out perfectly,;he came home Sunday night, and we were there so we didn’t have to get up early on Monday morning to travel.

We had blood work done at 10:30. Roger is still quite “dry” so it was hard for them to get what they needed, but I guess it was enough.

Then we met with the cancer doc. Appointment was at 11:45. Saw her at 12:30.

  • I asked about the flu shot. She said yes, he could get one, and they gave it to him then.
  • She knew he had been admitted for hydration.
  • I told her that he had been sleeping a lot and was still gaining weight. She said that he will have about 2 more weeks of being tired, and then bounce back a little until the next chemo. It’s ok for him to sleep. They are not too worried about the weight. Then came the test of “three words:” He remembered 2 of them. That’s pretty good.
  • She said there will be weekly bloodwork and then we will come back November 5 for MRI and November 6 for the next set of Chemo (Lance…..I made the times so it will work out for us. That way we can go Wednesday to STL and spend the night at Scotts and then appointment early Thursday morning. We can go back home and then head to Bloomington in enough time.) (Scott and Jess….hope this is ok. Lance can sleep on the couch like Lisa always does) (Lance, can you tell I am excited about seeing you? The Bradshaws will come over Sunday night, and we are going to play nertz, etc.)
  • I asked then what? How do you know when you have done all you can?
  • She said, the routine treatment is 6 months of rounds of the 5 days of Chemo. They have done studies and that seems to work the best.
  • I asked, when do you stop, if necessary?
  • She said there are some things they look at.
  1. How the patient presents, i.e. observation, scores on what he can remember, etc. If he is really bad, can’t move around, etc., then they are out of choices. Breast cancer, Prostrate cancer, etc. have many choices. If one chemo doesn’t work, they can try another. Brain cancer has only 2 choices. Tremodar, and an experimental drug. That’s it.
  2. When the patient can’t tolerate any more they stop. “We don’t want to kill the patient with chemo.”
  • So, she was pretty up front in doing what they can, but stopping when it’s not working, or they are out of choices. She emphasized that everyone is different. Everyone reacts differently to treatment. Humans are not machines.
  • We grabbed a bite to eat and went to the Kidney doctor. Dr. Delmez was so kind to us. He said that he was so shocked when he read the record that Roger had glioma. He said, “Surely this is not Roger. He has been through so much, and has weathered so many storms.” He just couldn’t believe it. And he felt so bad for us. He said that we could come back in 6 months; he understood that Roger had a lot more going on than seeing him. He did say Roger’s kidneys were even better Monday after the blood work. Creatinine was 2.0. Didn’t have an explanation for why they went bad. Just keep drinking.
  • Then we went to the Heart doctor. Roger’s heart is fine. Dr. Kates is also a wonderful doctor at Barnes. He has such a concern for us. (This is why I just broke down and cried all the way to Collinsville. It touches me how concerned most of the doctors are at Barnes.) Dr. Kates visited us in the hospital when we were getting the diagnosis, and Scott and Jess, and Lisa, do you remember we were all playing phase 10 or golf and he got a kick out of us? Well, he said, “I remember your family playing cards with you, and I was so struck by how they were so upbeat. They really love you and will be a great support for you.” He looked at us and said, “Is there anything I can do?” It was just so tender to me.

We left at about 5:00 pm and I just sobbed and sobbed. I know it was because I was tired; Roger was so understanding at that point and hugged me. I got to Collinsville, got a sandwich and then did a FaceTime with Steph. That helped. Roger understands, but he doesn’t understand. I think I was just so physically tired and faced with this long journey. Couple that with reading this link below that I had stumbled upon, and it just dumped a cloud of “weariness” on me!

http://glioblasted.com/

Pastor Thompson will watch Roger while I get my “hair did” on Wednesday. I have a singing on Saturday and Bill Fleming (I think) and Karen Overlin (our nurse at church) will stay with Roger. Elaine….I know there are people I can call on. I just feel like a “mama” leaving her kid with someone. I’m the only one who knows how to take care of him. Others might not handle him right or understand him. That’s what is in my mind. It’s probably goofy, but that’s where I am right now. Believe me, the time will come when I need more help. I’ll ask.

Love,

MAMA

Thank you all for loving me and dad. We can feel it. I’m not writing this for you to be sad. Just to update you and let you know that this is a new day. I have my list of things to do (I love lists) and it’s all in Decatur! 🙂

We go to see our Primary doc Friday.

So, that’s the scoop.

We got home and it felt good. We actually walked and ran this morning. He walked. I ran. I did a mile, and it felt so good.

Yes, indeed.  The wise man builds his house upon the ROCK.

 

Posted in Brain Tumor, Family, Foundaton, Glioblastoma, Radiation, Shingles | Leave a comment

Chapter 10 – When the Storm Gets You Down

When life gets you down…

Or, I guess, when a storm gets you down, at least tread water.

That’s what I felt like we were doing.

  • Move the arms and legs to keep from drowning.
  • Focus on the 30th radiation treatment.
  • Go forward as much as possible to get to that MRI.

Lisa and her friend, Abby came home for a weekend in September. They did a little cleaning…well, a lot actually. We got rid of some drywall and trim. Roger knew that we were cleaning, and that was good. He didn’t say anything, but I still had the eerie feeling that he would be so upset when he went upstairs. But I kept hearing Chad’s voice in my mind, “Mom, he’s not ever going to be the same. We have to do this sometime.”

519

Roger had a hard time remembering things.  Well, that’s an understatement. Remember the “Dory” reference? Like her, he couldn’t remember a LOT of things.  One of those was the code to unlock his phone.  He would put in random numbers, get locked out, and ask what happened.  Lisa had a bright idea.  She wrote instructions, and then made it the lock screen photo, so when he tried to used the phone he would know what to do.

We eventually wised up and took the code off!

Another weekend Lisa came and stayed with Roger while I sang with State of Grace. Because she lives in Green Bay and teaches there, she had to leave on Sunday afternoon. That meant I had to find someone to stay with Roger from the time she left. Our good neighbor, Bill Fleming was willing, so he came. When it was time to go to church, he took Roger, and I met them there.

The weeks brought more chemo and more radiation. The weather was beautiful, and as we traveled I teared up when I told him I loved him. I told him that I loved him just the way he was when we dated, when we married, when our kids came, when he got the liver, when he had his colon removed, when he got a new knee, and when he got the brain tumor. I still loved him.

20th RadiationWe completed  the 20th radiation treatment.

We listened to the radio as we journeyed to the Siteman Cancer Center. One of the broadcasts was about depression and discouragement, and I’ll not forget the illustration that was given.

One night at dinner a man, who had spent many summers in Maine, fascinated his companions by telling of his experiences in a little town named Flagstaff. The town was to be flooded, as part of a large lake for which a dam was being built. In the months before it was to be flooded, all improvements and repairs in the whole town were stopped. What was the use of painting a house if it were to be covered with water in six months? Why repair anything when the whole village was to be wiped out? So, week by week, the whole town became more and more bedraggled, more gone to seed, more woebegone. Then he added by way of explanation: “Where there is no faith in the future, there is no power in the present.”

I love the last statement. Where there is no faith in the future there is no power in the present.

One day at radiation we both laughed at something. A son was pushing his dad in a wheel chair out the door after treatment, and he banged right into the door. We heard it go clunk, and then the dad said, “Well, you’re 0 for 1.” We laughter and laughed. Me, because I have had that same problem in that same door. Roger, because he is sadistic.

Throughout the month of September, Roger began sleeping more. He also started to say odd things.

From my journal ~

Out of the blue he said that he had his gun out of the holster today. I asked why and he said because of the people coming around. He just wanted to be prepared. He wanted to know what I was typing and I told him. He said he was glad I wasn’t awake when he went outside and tried to fire it the gun.

He asked me where the cats was that were here to protect us from intruders. I said cats don’t protect. They run and hide. He said we had a cat once didn’t we? There was one here? I said Lisa had one. And it hid. He said we had a dog, too. I said that was a long time ago.

He came in and asked where the documentation was for the CD we made? Through questions, I found out he wanted to know the mechanical licenses where to the choir CD because he wanted to reproduce it again and sell it.

25th RadiationWe completed the 25th radiation treatment.

I asked the doctor just what the radiation was supposed to do, and he said, “Contain, or possibly shrink the tumor. Roger will get an MRI in a month, and then every two months after that. The first may show swelling. That is typical. That’s why he has an MRI every two months.

My gut feeling was that the MRIs would be the thing to show us the progression of the tumor.

Our continual source of strength through this whole journey was God.  Prayers of the saints actually helped me feel like I could go on.  They were the encouragers, like Dory, who spiritually whispered, “Just keep swimming; just keep swimming.”

 

 

Posted in Barnes Jewish Hospital, Brain Tumor, Glioblastoma, MRI | 4 Comments

Chapter 9 – Tending to the Mundane

Life goes on.  By that I mean you have to take care of the everyday things that happen. Whether you want to or not.

In the midst of a storm you think your focus is on the storm itself. But if you don’t tend to the mundane, you will find yourself in a more complicated storm.

I hadn’t been in the habit of checking online banking transactions, but for some reason I went online to check my deposit amount for my pension.  Lo and behold, I noticed a $246 pending charge on one of my debit cards.  It was from Portage, Indiana, a place that I had not visited.  I called the bank, put a stop order on the card, and the teller said I could get a new card that very morning. It appeared the debit was from a compromised hack at Dairy Queen, which I did frequent. I was grateful that I was nudged by the Spirit to check the online activity; if I hadn’t, the results could have been a disastrous.

We began our second week of radiation, and after getting Roger’s routine blood work done, we traveled to St. Louis.  I brought my mom’s little wheel chair, thinking that it would be easier for me to maneuver.  It was adequate, but because the wheels were not big, moving Roger around was hard.

A funny~

State of Grace was invited to sing at a prayer vigil for the persecuted Christians in the Middle East  It was a nice event, but so you understand this next “funny,” you need to know that it was in a Catholic Church.

We pulled up and I said, “Well here we are. It’s a Catholic Church, you know.”

He said, “Ok.” Then he said, “What’s the family’s name?”

“Huh?”

“What’s the name of the deceased?”

He thought we were at a funeral home.

I remember being worried about him wandering.  He said he needed to use the rest room, so I tagged along, following him like a detective, making sure he got to the right door and made it back to our pew.  It was a responsibility that was there right up to the end.

At Roger’s 9th radiation treatment, I sat in the waiting room and looked around. These were my observations:

  • Cancer is no respecter of persons.
  • Old, young, rich, poor, confident, business people, poverty stricken, thin, fat, pretty, homely–all are here for one of two reasons: they have cancer or they are a loved caring for the cancer patient. And yet I see a third party:  the “transport” person.  It’s someone who is not emotionally or relationally involved, just doing a duty assigned to move the patient from one place to another.  I wonder what they think?
  • Some people begin to look familiar.
  • I sit here and see people filling out the new intake form with clipboard in hand and remember that it was just nine days ago that we were doing the same thing. (Family history of cancer always stumps people. Sometimes they have to ask each other about Uncle Fred or Aunt Abigail. Grandparents’ death, parents death, siblings death, cause of death–all of those are hard to remember)

I should have thought twice about making that trip for the 9th treatment. I was exhausted. We had gone home the previous day after treatment so I could get my hair done and sing with State of Grace. Then we drove back for our Friday treatment, and turned around and went back home. I remember thinking how good it was to sleep in our own bed last night.

At this point, Roger seemed to be pretty good, although “good” is a relative term. He stills asked questions that I thought he should know the answer to.

  • Did I take my pills?….he just did 5 minutes ago
  • Were we here today already?……no, that was yesterday
  • Where is the bedroom?……where it has always been in our house.

And yet he was so loving. He cried occasionally; he said he was so happy. That Saturday morning he made a statement that caused me to pause.

He was crying, and I asked him if he was ok.

“Yes.”

“This isn’t necessarily the life we had picked out, but it will be OK.  We planned other things for retirement, but this is what we got,” I commented.

He said, “Yes, I know I am crying, but it is because our life is going to have a tender end.”

The 10th treatment. Ten of thirty.  One-third done.

While sitting for his 10th treatment, I overheard a woman say that they were going to start extended care and hospice for her husband.  I wondered if he had what Roger had. I wondered if Roger would eventually look pale and numb sitting in a wheel chair, like that man.  Watching them made things more real.

We took the “10 days radiation done” picture with many trials.  You’ll notice that we even got a “15 finger plus 2 grapes” shot.

The previous week Roger’s platelets were 114.  The current number was 127, so they were trending up.  He had enough energy to go watch Scott play in a church league soft ball game. Chapter 10 Scott's Home Run I know it made Scott glad to have his dad see him hit a home run.  Before we attend an event, Roger would always ask me, “Now what is it that I have?” And l would tell him, “It’s brain cancer.”  He probably wanted to be able to tell people what was wrong with him.

Scott was empathizing with Jessica.

Scott was empathizing with Jessica.

On September 11th we celebrated Jessica’s and Lisa’s birthdays, except Lisa was in Green Bay, so we took Jessica out to eat.  She said that she thought Savannah Ruth would make her appearance soon.  I stumbled across these videos we had made for Lisa on her birthday.  They are so funny to me.  Please ignore my lack of make-up and our lack of rap skills.  I’ve also included one that Lisa made with kids on my birthday.  It gives me joy to see Roger laugh.

Happy Birthday, Lisa   Happy Birthday, Lisa from kids  Happy Birthday, Glenda

Chapter 10 Tight MaskHis radiation mask seemed tight.IMG_5955 I guess with all of the swelling from the steroids it was bound to happen.  They didn’t seem too concerned about it.

Roger had settled into a routine by the third week of radiation.  At that point he managed personal hygiene pretty well, except he needed to be reminded, AND supervised.  One morning I told him (with him looking at me and repeating after me what the directions were) to shave, take off his clothes, wash, put clean underwear and get dressed.  I checked on him five minutes later to find him watching TV.  He grinned at me like he knew exactly what he was doing.

Fifteen days down!  Half way done!Chapter 10 or 11  15th Radiation

A new life!  Savannah Ruth was born.  At noon.  September 17, 2014.  God ordered the timing.  Scott and Jess went in at 4:30 AM, and she was induced.  I did school with the three little ones (Jessica home-schools them) and then we left for Roger’s radiation.  I’ll never forget Ava’s excitement when we got the news that Savannah had arrived.  The nurses in the radiation neurologist’s office were almost as happy as Ava to hear the news.

A side note:  Getting the three kids AND Roger ready was interesting.  It was like juggling plates. Three little kids and one big kid! 🙂

The doctor took Roger off all of the steroid pills, so that is good.

From my journal on September 18, 2014

  • I sit in the waiting room and think that I could be the one in the wheel chair. Some men are taking care of their wives.
  • Yesterday a woman rang the bell for as many days as she had radiation. She almost gave a speech.
  • I also think that we are on the downhill stretch. This is day 18. After Monday we will have only 10 more days. Then what will we do with our time? I think and predict that Roger will be good for another four months. Then things will go downhill.
  • We walked a half mile around Scott’s block this morning at Roger’s request. That is a great sign.Chapter 10 We walked around the neighborhood

 

Posted in Birthday, Brain Tumor, Glioblastoma, New Birth, Radiation | Leave a comment

Chapter 8 – Believing Through the Storm

Did you miss my post from last weekend?  That’s because I was getting ready to go to Florida with Chad’s family.  We had a fabulous time, and I hope you won’t mind if I post a few pictures from that trip.

And now, back to our story~

The storm WILL rage, and the winds WILL roll.  But to believe in the middle of it all, to have faith that leads to Jesus, that’s the secret to riding out the storms of life. (Source)

Mondays through Fridays became routine to us.  Make sure the five alarms are set before I go to bed, wake up with the alarms (and the multiple times in the night when he gets up to use the restroom) to give him medications, and go to radiation.  He was not nauseated, though he did perspire a lot.

One night we watched “The Alamo.” It made Roger cry; he was so tender. He cried in thanksgiving for me in the mornings.  He said he loved me so much.

I found that using a wheelchair to get him around the Siteman Cancer Center made life much easier for me.  It took less time, and made getting to elevators and through automatic doors a snap.  I also became an expert on which wheelchairs worked easier for me.  They had some new ones, but they were very hard to move, so I grabbed the old ones as they were available.

A funny~

One afternoon the radiation was quick, but the traffic was horrible from downtown St. Louis to West County.  Jess had texted me to get a soda for her if we could, so I asked Roger to simply text back that we would.  Somehow he got on an old text, couldn’t find how to reply, and then out of the blue I heard songs from my play list—alphabetically—and they were the ones I listen to when I jog.

It began with “Anamaniacs” except it was in repeat mode, so I heard it about SIX times; I laughed as we went down the interstate, thinking I would go crazy listening to that song over and over.  Somehow he got to the next one–Bonanza–Down to the River and Pray–The Electrical Light Parade—you get the idea.

Roger was still confused about simple things, like where to empty his pouch, and he didn’t sleep well at night.  One night as he lay down to sleep he said that he felt like a high school kid.  I asked why, and he said it was because he felt like he had just run a 440 (that was the race he set records in during his high school years), and now he was exhausted.  Maybe that is what his fatigue was like.

Do you remember that Jessica and Scott were going to have their fourth child in September? Well, their church had planned a baby shower for them, and it worked out that all of the Weldy women were able to attend.   It was a refreshing time when my mind didn’t have to focus on sickness or death. It was all about a birth at that party.  And it was delightful.

We made some great memories at Scott’s.  The boys often came downstairs, and Asher enjoyed playing ping-pong with Roger. And, as you can imagine, with three kids, there is always something funny or exciting happening. Roger had a hard time remembering the pass code for his phone, so Lisa took a picture of  “Ask someone for the code” and made it the main wallpaper.  It seemed to work for a while, and it kept him from locking himself out of the phone.

One weekend I traveled back to Illinois and was able to get a great night’s sleep, the first I had in a long time. Six hours straight. I began to wish I could bank those hours for future deficits. To give you a glimpse into my physical and emotional state at the end of August, here is a message I sent to Roger’s sister, Elaine:

Hey, Elaine.  I need some extra prayer just now.  It’s hard to explain.  I’m ok. Roger is ok. But, here’s what I wrote in m journal.  Maybe it will explain it better.

  • I think I am beginning to crash or feel the effects of this life.
  • I feel so tired.
  • I am not depressed, but I feel funny emotionally. It’s as though I need help with managing everything.
  • I’m tired of managing the pills.
  • I’m tired of getting up in the night with Roger to see that he makes it to the bathroom.
  • I’m tired of explaining things to him.
  • I’m tired of making sure he doesn’t eat too much.
  • I’m tired of remembering that he can’t be rushed.
  • I’m tired of feeling out of sorts with everyone.
  • I’m just tired.

And now he has a huge tooth filling fall out. I think it is one that holds in his plate. What do I do now? He is here in St. Louis for the weeks, only home on weekends.

And the scary thing is that I know this is just a beginning. It will get much worse. I honestly feel like I am panicking inside. I don’t know if I can do this.

In the middle of the night he sat on the couch, and I got him to come back to bed. As we lay there he said he didn’t know who he was. His poor mind. It’s just spinning, and he is aware sometimes and not at others. He can laugh at funny stuff and even gets innuendos, but the depth is not there.

So….there are my thoughts. I know you can’t fix it, but you know the One Who can help me get through this, if it He chooses not to fix it.

She wrote back with this sweet note

Dear Father we need to start this moment right now, right now with you. We need your peace and strength. We need your hands to reach out and hold us for we are weary and we want to soar like Eagles. Our hearts are so heavy out of love. We give this day to you and ask you open doors for help and provide according to your promises.  We trust you with Roger -either way you got him –he is safe and loved. Envelope Glenda until she feels your presence your strength at a new level. Emotionally she is drained and needs to feel more than emotions. She needs to feel your strength in her mind body and soul.

Open the doors of wisdom.  In Jesus name Amen

When does your family come? Do you want me to come?

It is time for you to get help. Ask your doctor to help you get help, visiting nurses, hospice -they don’t just come because it’s the end anymore. You are both facing the unknown and even though our faith is strong we don’t know, we don’t understand, we are weak.

Keep talking, praying, journaling, loving. I am here, I can be there in five hours. I know how hard it is on the care giver but God is there even when you feel you are in a cloud. Right here with you.

My gratefulness for supportive family members cannot be measured.  And five days of chemo and radiation were done.  We had survived.

Day 5 of radiation done!

Day 5 of radiation done!

 

 

Posted in Baby Shower, Barnes Jewish Hospital, Blessings, Family, Glioblastoma, Radiation | 4 Comments