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

Chapter 7 – Riding the Waves of the Storm

Feelings are much like waves; we can’t stop them from coming, but we can choose which one to surf.  Source

I would add that emotions are like the waves in storms.  The ones you choose to ride may be overwhelming, but you can survive if you don’t fight them.

Roger has four siblings, two brothers and two sisters.  Three of those four live near the farm in Indiana where they grew up, and his older sister Eva lives in South Carolina.

On a side note, Eva was an ICU nurse for many years. When Roger was near death and needing a liver in July 2012, she traveled to Barnes to see him. It wasn’t two minutes after she entered that ICU room before she was checking machines, labeling his bed, and explaining how things should be done. It was so comforting to have her there.  But, as I said before, the rest of that story is for another blog.

Elaine, his baby sister, and her husband Mark made a day trip to visit Roger, and while he seemed to know them, he didn’t completely make the connection of how he knew them.  I enjoyed listening to Roger trying to remember the names of cows and dogs that they had as kids on the farm.

Elaine made Roger’s favorite kind of Rice Krispie candy; all in all it was such a nice visit.

Then they left.

Then Lisa left.

I thought I would cry, but I didn’t as much as I thought.  I kept thanking God for allowing Lisa to be with me so long.  After she left, Roger called me Lisa several times.  He couldn’t remember who was at our house; several other things showed me that his memory was declining steadily. But still he said he loved me and was thankful for all that I did for him.

You must realize by now that our four children are wonderful.  Even though they live so far from us, they all wanted to help as much as they could.  The fact that Roger could not be alone made them want to be available to give me some respite. I look back now and see how much I needed them.

Stephanie, Chad’s wife, had teachers’ meetings for a week, so Chad and the kids spent that week with us.  They were to arrive on Monday, August 18th, so I spent time cleaning and organizing things that day.  My journal showed that each day brought more signs of declining executive function as well as leg weakness.

I had thought we could run into town and get a soda before Chad arrived, so I told Roger to go to the bathroom before we left. Later I found him urinating in a tub where I kept the towels. Grrrr!  On the way he took a swig out of his little water bottle that he used to rinse his pouch.  It was as though he was a kid that needed constant supervision. At this point, I began to think about who I could get to pay to stay with Roger. I would need assistance soon.

It was so good to have the kids in the house.  Chad and I went upstairs to clean the office; we filled five garbage bags of “stuff.”  This was so difficult.  Part of me felt bad for getting rid of so many illustrations that he had cut from newspapers and diligently categorized.  It was like, “What if he gets better and gets upset with me?” Chad reminded me that Dad was not going to be the old Roger again. It was ok to clean. So we continued, part of me feeling good about the cleaning, and part of me regretting it!

For the first time I was a little fearful of Roger.  I suggested that he go to the bathroom, and he grabbed me by the wrist.  Then he relaxed.  I began to wonder what I would do if I ever had to make him do something.  Chad and I talked at length about the future.  He was concerned about what the chemo and radiation would do and how it would affect Roger’s walking.  We had been told that it would make him tired, but there were other things that could make it very difficult for me to even get him to treatment.

Chad, in his wisdom, suggested that I call hospice.  We both knew it was going to be inevitable, and we both agreed that we should make an initial contact and get our questions answered.  I looked in the phone book and picked out one based on its name.  I was relieved when we found out that Medicare would cover all of the costs and that hospice would be as involved as we wanted them to be.  They could not start services until all treatment was stopped and only palliative care was ordered by the doctor.  I kept that information in a safe place; I knew I would need it someday.

One day, early in the morning, Roger said something about dying.  I told him that I was a little worried about what we would do if the chemo/radiation made him so weak we couldn’t get him up the stairs at Scott’s.  Yes, I was having second thoughts, wondering if we made the right choice.

He started to cry.

I cried.

He said, “I don’t want to die.”

I said “We don’t want you to die either, but this cancer is going to take you.  We are worried that we are doing the right thing with the chemo.”

He said, “Well, if it doesn’t work, we’ll just have to stop.  If we have to, we will stop”

I made him repeat it to Chad, and we were both amazed at his clarity of mind.  It confirmed to us that we were taking the right step, but that we could stop if necessary, based on his wishes.

A funny~

We were going to Kroger’s for medicine, and before we got in the car Roger was looking for his phone.  I couldn’t find it so I said, “Let’s just go without it.  We will be right back.”  We got in the car, and this was the conversation before we drove out of the driveway.

Him:  I really can’t find my phone.

Me:  I’ll try calling it.

Ring Ring

Me:  I hear it.  It’s in your pocket.

Him: (feeling all of his pockets). It’s not there.

Me:  I’ll call it again.

Ring Ring

Me:  I still hear it.  Check your pockets again.

Him: (emptying his pockets). I don’t see it.

Me:  Get out of the car. I’ll call again.

Him: (gets out of the car)

Ring Ring.

Me:  I still hear it.  It’s got to be in your pants.  (Gets out of the car, walks around to him, hears the ring, feels the pockets, and….)

Me:  I found it.

Him:  Where is it?

Me:  It’s in your shorts pocket. You didn’t take them off before you put your pants on.

Both:  LOL LOL LOL

The day before we started treatments we went to church.  It was a blessing to see Roger move his hands as though he was directing the congregation when we sang the hymns.  He praised God verbally, encouraging the choir, singers, and preacher.

Then the day arrived.  Chemo and radiation.  The standard treatment.  The treatment that held unknown side effects.  The treatment that would consume our lives for the next six weeks.

We cried in bed.  We hugged so much.  I reminded him that this illness was terminal.  I cried.  I said I didn’t want to be without him.  I didn’t know what I would do without him.  I would miss him so much. He cried, and said that he thought he would be around five more years.  I told him that with treatment they expect maybe 14 months.  Without, maybe nine.  Or less.

I reminded him that when others were going through a family terminal illness, he always told the family that they would be teaching others about life and death. I was determined to follow his instructions and try to be an example to our children.

We cried.  Quite a bit. He told me I was wonderful and that I was the best thing that ever happened to him.  He said that I had been so good to him.

Our morning medication routine became different for me.  There was so much extra “waiting time” to get certain things in his system without food.  I didn’t sleep too well that first night, worrying that I wouldn’t wake up at the appropriate time, even though I had 5 alarms set on my iPhone.  I gave him the first “poison pill”. That’s what we called it. He didn’t have any odd feelings or side effects…yet.  That was a blessing.

We finally got on the road, headed to St. Louis, and after several pit stops (literally) we arrived at the radiation place. While we were in the waiting room I asked him if I should hang on to his phone while they did the treatment.

Him:  Where is my phone?

Me:  Oh, no, here we go again.

Him:  I don’t know where it is.

Well, being a quick thinker, I decided to try to locate it with the “find a phone” app.  BOOM!  It worked!  It appeared that it was someplace in Applebee’s by the hospital.  I immediately locked it, turned on the lost phone message and decided to worry about it later.

He returned from the treatment, and I asked how it went.  One advantage of having short term memory loss is that you don’t remember things you might want to forget. I asked what the custom woven mask was like that they put on him, and he gave me a blank stare.

When we arrived at the car, I dialed his phone.

Ring Ring.

Me:  Yay! I hear it!  (I looked all over the car, and finally found it on the floor between the seat and center column.) Why Applebee’s???  Oh, the restaurant was under the garage!

So that was the beginning of the treatment.  We were exhausted, but thankful for the lessons that we were learning.

Posted in Chemotherapy, Cleaning, Family, Glioblastoma, Radiation | 3 Comments

Chapter 6 – “Back of the clouds the sun is always shining.”

449_sun_rays_through_dark_clouds

Sometimes the sun shines through the clouds in a storm.  I learned to look for and cherish those rays.  (Photo Credit)

After the official diagnosis on August 6th, we returned home to some normalcy, whatever that was.  Roger’s appetite was good, but he still got mixed up with simple things.  For example, after he showered, he started drying off while the water was still running in the shower; he didn’t see anything wrong with it!

One day I took him to the mall and Walmart.  It was such a sweet time for us. On the way home we both just cried and cried.  He said he was so happy to have me as his wife and that we were so blessed.

He woke up early on Salem Baptist’s Anniversary Sunday, and when he came back to bed he said, “I’m so tired.  So tired.  So tired.  But I’m so thankful for you, Glenda.  God has been so good to us.  We certainly are all clay.”

At this point I found myself personally struggling with timing.  I am a planner, one who wants to know what is coming up so I can prepare.  This was the most difficult time of my life.  I had no clue when death would come, though I knew it would.  I had no way to plan for things, or how, or who to ask for help, because I didn’t know when I would need it. After reading so many things on the Internet, I concluded that there is no time line until you get to the end. This site brought truth and reality to me and was a great assistance:  Brain Hospice

I didn’t want to lack faith.  I didn’t want to think God couldn’t do a miracle.  He had done it before when Roger miraculously received a liver at the 11th hour.  But honestly, I had an inner sense that this was going to be the end on earth for Roger, and I didn’t feel ready.  I worried about the car titles (they were in his name.)  I worried about investments because some of them were in his name. I worried if we had the correct documents for the trust. How would I prove I had power of attorney?

Roger attended the anniversary service at church, and everyone was so happy to see him. He was loud and vocal with his amen’s, etc., but that was ok.  We got to hear his voice!

In our minds, we thought we could have treatment in Decatur.  This would be so much simpler, less traveling, and comfortable being home. So when we met with the radiation oncologist on August 11th, we were surprised that he convinced us to have the treatment done at Barnes.

I think about that day we made the decision to have radiation in St. Louis.

When Lisa, Roger and I were in the radiation doctors office and were given the option of having radiation treatments at Barnes or Decatur, we discussed the pros and cons as they affected us.

Pros:

  1. The doctors at Barnes knew Roger, and everyone involved with all of his medical issues would be in one spot.
  2. We would have a place to stay at Scott’s.

Cons:

  1. If we went to Decatur, we would have to start from scratch with testing, locating a doctor, etc.
  2. Fuel expenses and added mileage on the car would be huge traveling to St. Louis.

At Barnes it would be three weeks at a higher beam or six weeks for a regular beam.  The doctor wasn’t sure how the chemo would work since Roger was on anti-rejection meds for his liver.  We would start on August 25th. Monday through Friday.  We would stay at Scott’s.

The blessing of family:

After we left, I got to feeling bad about not even discussing it with Jessica. Here she was–very pregnant and not feeling too well, going to deliver her baby during that time, juggling home schooling with a new baby and having house guests–her in-laws!

So Lisa sent a text to Jess:

Jess, mama feels bad that she didn’t check with y’all first before agreeing to do the treatment here so she’s working I a pros/com list for you…..so far the pros are:  built in babysitter….someone to do your dishes…

Then Jess sent me a voice mail.  It was the sweetest thing that said:

Hey, here’s the “pros” list: We are family. That’s what we are here for. That’s why God put us in St. Louis, and you are more than welcome here any time you want. Here’s your “cons” list: There’s NOTHING. Ok? We are here. That’s why we are here. We love you, and we want to help you all that we can. You are more than welcome to come any time. Love you.

I wrote back to her saying,

Jess I just heard your voicemail. I cried.  You are so sweet.  Thank you thank you. If I call you now I’ll be crying.

What daughter-in-law would give up her house, schedule and privacy to her mother-in-law?  MINE!  This is a public thank you to Jessica.

The little blessings:

  • Roger had to have a CT scan before the treatments. God worked it out so he could have it that afternoon instead of having to come back the next day.
  • We had to have chemo education. Chad was planning on coming the next week, and the nurse said she hated for us to come all the way back then. She checked to see if it could be while we were still in St. Louis. And she made time for us.
  • I called our financial advisor and explained the situation with Roger. I asked advice on what to do with the accounts that we in Roger’s name only. He said he could send a form for him to sign give me the durable power of attorney. It needed to be notarized. The form came the next day in the mail, I explained it to Roger he signed it, we got it notarized and then put in the mail.
  • We took Lisa’s car in to be checked, and the brakes were replaced and we were able to pick it up the next day.

During this time of waiting for treatment to begin, Lisa brought reality to me, a reality that I was expecting, but was trying to deny.  We were talking about daddy and his mind, and I asked her, “Do you think his short term memory will improve.”  She said, “No.”  It was true, but so sad to hear it from someone who “wanted her old daddy back.”  Yes, it was true.  He would never be the same old daddy here on earth.

I also learned an important lesson.  I ran into someone whose relative had succumbed to a brain tumor.  The picture that was painted was horrible.  It was expensive, difficult, painful, and depressing.  I came home pretty discouraged, but God reminded me that people have different experiences, and I shouldn’t expect mine to be like theirs. I prayed that Roger’s end of life would be gentle, peaceful, and merciful so that we would glorify God though it all.

You probably think that the brain tumor was the top issue at this time.  That is true, but only partially.  Since Roger’s total colectomy in February of 2013, he had been managing the changing and emptying the ostomy bag on his own.  At the beginning it was a major undertaking–getting things ready, getting things cleaned and applying the appliance. Emptying it every two or three hours when it was full eventually became routine, and almost normal.  By the winter of 2013 Roger was self-sufficient.

In mid-August he had a huge blowout in the night.  By that I mean that he dripped poop in the bed, on the toilet, on the floor, and even into the kitchen (for some reason he frequently thought that the bathroom was the kitchen.) This was the biggest “accident” he had ever had.  I got up, got him in the shower, stripped the bed, helped him put the new appliance on, and then he laid on the couch. I laid on the front room floor for a few hours while the bed dried.

At that point I was frightened and feeling sorry for myself.  What if he was with someone else and it happened?  How would they know how to help him?  What about me?  It was so much extra work.  But then I thought, “I have no job I have to get up for; I have no kids; it’s OK.  This is was what I signed up for.  I’ll trust God that He will be merciful to us, and by that I mean take Roger soon and in His time.  God had never gotten things done too late for us.  I must trust Him.”

Roger continued to be very loving and tender.  He constantly told me how I helped him so much, and that I was the best thing that happened to him.  I remember telling him frequently, “You are not being an inconvenience to me.  I want to take care of you.  I want you to know that you are not a bother.  This is what I need to do.”  I’m glad I said those words; they must have stuck somewhere in his mind.

As we lay in bed, he said over and over, “I’m dying.”  And he seemed so very weary. Again, hindsight tells me that I should have agreed with him and asked him how he felt about it. The typical response is, “Oh, no you are not.  You are going to be just fine.”  I never said that; I knew it wasn’t true.  But, as I said before, I do regret not talking with him about his perception of things.

Our oncology education began on August 14th.  Lisa PuzzleWe arrived at the Siteman Cancer Center and waited for Roger to get initial blood work.  Lisa worked on a jigsaw puzzle—without the tape “measurer.”

Let me explain. While we were home, Lisa and I thought Roger might enjoy putting together some simple jigsaw puzzles. It was an idea. But not a great one. Lisa got out the puzzle, started it with the usual outside pieces, and the next thing she knew, Roger was getting a tape measure and measuring the outside dimensions to see if they agreed with what was on the box! The pictures are self-explanatory.

I surveyed the room waiting room at the cancer center; it was surreal that I was part of this mixed group. I saw humans in different stages of their storms–some in wheelchairs, some knitting, others reading or talking, several trying not to vomit, many pale and sickly. Caregivers were weary and worn, pensive, or perhaps afraid.  All were touched by this disease.

Up to this point we knew that we had to keep an eye on Roger, but he was able to get around, so we didn’t think there would be an issue with him going to get his blood work alone.

Much to our surprise, a nice lady came out of nowhere and said to me, “Mrs. Weldy? We have your husband.  He kind of got lost, but we found him.”  There he was, standing with a soda in one hand and a bag of pretzels in the other, grinning like a found lost child.  Lisa and I seriously considered putting a lanyard around his neck with a card that said, “If found, please return to…..” Had to love him.  Hated the disease, but loved him.

Lisa and I made another video about our journeys to Barnes.  Anyone who traveled a distance to get there for routine appointments would identify.

Traveling the Road

We returned home to Illinois for the weekend, and Lisa was going to bring Roger to the State of Grace concert, a Southern Gospel trio I sing in. But when I got ready to leave, he was tired, so he didn’t come.  It made me feel so sad that he didn’t have the energy he wanted to have.  And I really felt worried about what I would do when Lisa left.  Well, not actually worried; I just wondered how things would go.  It’s always been hard for me to ask people to do stuff for me, and I knew it would be hard for me to approach people with my needs.

An excerpt from my journal:

Time.  What is it?  Do we want more time?  Why do we do things to extend our lives?  To have just a few more months?  What purpose does it serve?  When Roger starts his treatment it will be just him and me.  We should be fine, but I wonder what impact it will have on him.

I think back on the decisions we made and look at how we were tempted to do anything and everything to help Roger.  My children helped me balance the treatment with the benefits. The time we had with him was so short, but any extra time we got could have been good or bad.  We really needed God to direct us.

 

 

Posted in Barnes Jewish Hospital, Blessings, Brain Tumor, Family, Glioblastoma | 3 Comments

Chapter 5 – Storms don’t stop for birthdays.

The National Weather Service predicts Christmas Eve precipitation from Missouri to Michigan, with rain turning into snow in some areas (2014).  Do you know what?  Storms don’t stop for Christmas…or birthdays.

August 6, 2014.  It was a birthday I’ll never forget.  I turned 65 on this day, and I joked many times about me crossing over to the “officially old” group.  I was a “card-carrying” member of Medicare, and in our plans, we were going to be having a great time in retirement, living off of all of the twenty-something’s paying our medical bills.

It was two years ago that we celebrated my birthday in St Louis–in a hospital setting.  Roger was in a rehabilitation center to gain his strength after his liver transplant.  (That’s a whole different blog that has yet to be written.) This birthday was made memorable by meeting with the neurosurgeon.

During our meeting with Dr. Dunn, he said that the pathology report confirmed what he thought from the brain biopsy.  Grade 4 Glioblastoma. Treatment, if we choose, is not ineffective but it is not curative.  That phrase. We would hear many times over and over. He didn’t come right out and say it, but the disease was terminal.  Roger will die from it. He did explain that “radiation and chemo have good success in treating the tumor, but, again, it is not curative.”

Dr. Dunn discussed how they used the MRI to guide the biopsy, but there was “stuff” they couldn’t see.  More might be hiding under the contrast color.  He checked Roger’s short term memory; Roger only remembered one word. The stitches came out, and then we laughed a lot about AFLAC. I had mentioned that since we had cancer care insurance with them, they would need some sort of official diagnosis. Dr. Dunn said, “I’m sorry for laughing, but all I can think of is that goofy duck on the commercial.” He was so helpful in having his assistant providing us with the official pathology report to expedite the filing of that first claim.  That was a blessing to us.

Then began the flurry of appointments.  Oncology was the next day; Radiology on Monday.

Roger woke early the next day, and as we laid in bed he kept saying over and over, “I’m dying.  I’m dying.  I’m dying.”  I pondered if things had finally sunk into his mind. He hugged me as we talked, and said over and over how much he loved me, and how good we had been for each other.  He said I felt so warm.  We cried.  It was such a tender and sweet time.  We quoted songs and scripture…..”God is our strength.” “A Mighty Fortress is Our God.” “How Firm a Foundation.”

I pause here for a regret:  I regret not discussing the “I’m dying” phrase.  I could have asked him why he thought that.  I could have probed a little more to see what he was thinking.  Instead, I said, “Oh, Roger.  We are all dying.  Some of us may go sooner than others.”  And I brushed off the statement.

It was also during this time that I found an interesting flaw in my character. Someone once said, “A crisis is not a course in how to live; it is the final exam.  It reveals your character.” Here is my flaw.  You may not see it as a flaw, only a human quality. But when I examine who I am, this is not what I want to be.  I saw retired couples in public having fun, traveling, etc., and I felt jealous of them. I saw friends on Facebook who were having fun in retirement, and I wasn’t. Whah, Whah.  I shook my head many times and thought, “I must not dwell on those feelings.  I am where I am because God wants me there.”

And, to be honest, I still have those feelings.  I am very aware of other couples.  That jealousy rears its ugly head often.

Our meeting with the oncologist didn’t really get off on the right foot.  English was not her first language, and she was extremely hard to understand.  Add to this her assumption that we would do radiation and chemo, and our collective opinion was, “Whoa.  Wait just a minute.  Let us digest, decide, and get back with you.”

She answered our questions and explained the standard course of treatment, but she still wouldn’t exactly say how much time Roger had if we did nothing.  “With chemo and radiation the average life span was 15 months.  Without it, maybe 9 months….” and looking directly at us, “….or less.” We left the meeting with the understanding that we would talk as a family and let the doctor know what we wanted to do.

That evening we had a conference call with all of the kids.  Lisa and I were at Scott and Jess’s house, so we sat around the table with Chad, Stephanie and Lance on speaker phone.  Roger spoke that night with such clarity that we were all amazed.  He comprehended the brain tumor and the options, which were:

  1. Do nothing
  2. Do radiation and chemo
  3. Do radiation only if his blood counts were low.
The three choices; Roger clearly chose #2 and dated it.

The three choices; Roger clearly chose #2 and dated it.

He chose the radiation and chemotherapy, understanding that it would give him more time. He said, “I want to fight this as long as I can.” He also understood that the treatment would make him tired and possibly sick. His mental acuity was underscored by what he wrote under choice two.  Can you see it in the picture?

The next morning I asked him if he remembered what we talked about yesterday, and he did.  He knew the options and remembered the one he had chosen.

I found myself weary and ever so thankful that our kids were available for support.  I didn’t realize how much more I would need them down the road.

Another funny:

  • We all needed this humorous interchange at this time. We were deciding what questions we needed to ask the radiation oncologist, and as we went over the list, we asked Roger if he had any questions. After a pause, he asked, “Will this affect my fertility?” Insert hilarious laughter. Then he asked, “Will I be able to wear white after Labor Day?” Unfortunately, because he was so much like Dory on Finding Nemo, he didn’t remember to ask the doctor.

And, to remember that we were not the only ones suffering, we were reminded of a dear friend who was struggling with the shingles.  Our pastor had encouraged us to send her a card; Lisa and I thought we could do something even better than that.  We made her a video, one that we hoped would cheer her up.  We learned that it not only cheered us, but also many others, too!

The Shingles Jingle

 

 

Posted in Birthday, Brain Biopsy, Brain Tumor, Character flaws, Chemotherapy, Diagnosis, Glioblastoma, Radiation, Shingles | 1 Comment

Chapter 4 – We thought we were prepared.

Chapter 4

If you wait until the storm is upon you, you may be exposed to wind, hail, rain, lightning and maybe even flying debris as you go to the cellar.  Source

The all-important brain biopsy happened the morning of July 28.  Scott and Lisa were there with me as they took him.  We waited.  And we waited.  It seemed that we waited awfully long, and when I checked, it appeared that my pager wasn’t working.  I missed the initial call about surgery beginning, but eventually received a call that he did well, and it was over.

Dr. Dunn took us in the consult room to discuss what he found.  I remember all of the other surgeries that Roger had prior to this one, and the surgeon had always reported to me in the waiting room. With all of the people sitting around me, I’ve often wondered how they addressed the HIPAA laws in such a public setting.  Maybe it’s because the news was always good.

This time, as the door to the room shut, I could sense the doctor would confirm what we were dreading.  I was glad that a foundation had been laid about the possibility of glioblastoma, otherwise the meeting in that little room would have been horribly frightening.

Dr. Dunn explained that the tissue was sent to the lab, and the initial finding confirmed that Roger had Grade 4 Glioblastoma multiforme.  He didn’t sugar coat things, but he didn’t paint a bleak picture either.  He said that a study done in 2005 showed that the average life expectancy for people with what Roger had was 14 months.  That was after six weeks of radiation and oral chemotherapy.  He encouraged us to think about the treatment, adding that if Roger was his dad, he would go for it.

I remember sitting in that room.  Scott and Lisa were there, supporting me and collecting information to share with their siblings.  My eyes watered, but I maintained composure the best I could, thanking Dr. Dunn for the kind care he had given us.  Later that evening we had a conference call with the kids so everyone could know what the surgeon had said.

That night they put Roger in ICU after waiting for a spot to open up.  At 11:00 pm my phone rang.  It was the nurses station.  Being jolted out a sound sleep to hear, “Is this Mrs. Weldy?  This is Barnes ICU calling about  your husband,” brings panic.  I was so relieved to know that Roger just wanted to hear my voice.  He must have been so afraid, all alone and not really comprehending what was happening.

I needed to get back to Decatur to return the rental car, get our car from the repair shop and pay some bills, so the next morning Lisa went to the hospital and found Roger in ICU. After my errands, I returned to Barnes.  Roger seemed so confused.  The staff didn’t quite know how to empty his colostomy bag and had used three bags in the process, which was frustrating to me.  I had only brought three spare bags.

Eventually, Roger got into a regular room….a “step down” room–intense, but not as much as ICU.  He was on an “alarm pad” so they could know if he was trying to leave the room.  That was so hard to see.  We cajoled him as he tried to get up and out of there!

Some funny stuff

While we were passing the time, Lisa and I sang.  We sang just about anything that had words and chords.  This video is one that gives me a chuckle.  Roger was already 65, and I was 64 at this time, so the song was pretty appropriate, in more ways than one!  I love to hear him get tickled at some parts.  Maybe you will, too.  Click on the title to see the video. When I Am 64

Eventually the discharge process began, and with it came more evaluations.  First OT came in.  It was pretty routine.  Except this.  He would now need 24/7 care.  Someone would have to be with him all the time.  I reflect on that now and realize the enormity of that statement.  I wasn’t tired yet, but I now had an inkling of the huge responsibility that would soon be mine.  PT evaluated him and pronounced him fine.

During the discharge process Lisa and I waited.  And waited.  And waited.  All of the waiting got us inspired to make a video titled Hospital Time Ain’t Real World Time.  Lisa sent it to Barnes, and they contacted us!  It seems that they were beginning an initiative about coordinating and speeding up the discharge process, and the liaison said the video would be used in training. Click on the title to see the video. Hospital Time Ain’t Real World Time

We finally got home, back home to what was familiar, what was normal, although we would never have another “normal” day.  The next Sunday we went to church, and it was so good to see everyone.  The pastor asked Roger to pray, and for a moment I thought, “This is going to be awkward.”  But I didn’t have to worry.  Roger prayed from his heart and it was beautiful.

Then we lost Roger.

Literally.

Lisa and I were talking to folks after the service and all of a sudden we couldn’t find Roger.  He had wandered off and was nowhere to be found.  Come to find out he was outside, walking where the buses park as they wait to pick up kids after church.  Yes, he did indeed need watching.

So began our time at home.  One thing we noticed was that Roger’s reality blended with what was on TV.  For example, after he saw the Andy Griffith program where they drew out of a hat so the unlucky guy would win the TV, Roger kept asking when the drawing was.  He asked how we would pick the numbers.

Roger could still take care of his personal needs (toileting, dressing and feeding), but his mobility was slow.  We walked to the cemetery, and it exhausted him. But there was always a blessing to balance out a challenge: Roger never had any pain.

We always enjoyed walking in the cemetery near our house.   I couldn't resist taking this picture.

We always enjoyed walking in the cemetery near our house. I couldn’t resist taking this picture.

Tonight I heard all five verses of Our Great Savior (J. Wilbur Chapman) at church. The fourth verse is fitting.

Jesus! What a guide and keeper!

While the tempest still is high,

Storms about me, night o’ertakes me,

He, my pilot, hears my cry.

Hallelujah!  What a Savior!

Hallelujah!  What a friend!

Saving, helping, keeping, loving,

He is with me to the end.

How thankful I am that we did not wait too late to prepare for this storm. At the beginning of this chapter, NOAA warned that if you wait until the storm is upon to you move and seek shelter, you could be hurt. Roger and I made sure that we were equipped and prepared for potential storms in our lives—physically and spiritually.

Roger always wanted the radio ready to go in the basement “just in case.” He checked to make sure that we had candles, matches, flashlights, and batteries charged and ready so that when a storm came, we would be prepared.

But most importantly he made sure that we were secure in our love, faith and trust in God. Many times he quoted, “Though He slay me, yet will I trust Him.”

  • We made sure that we kept no secrets from each other.
  • We kept “short accounts” of things that irritated us about each other.  At the end of each day there were no regrets about our attitudes.
  • We were not naïve.  We knew storms would come.  We had already weathered some.
  • We clung to the scriptures that gave us assurance.
    • Deuteronomy 31:6  Be strong and of a good courage, fear not, nor be afraid of them: for the Lord thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee.
    • 2 Corinthians 12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.
  • And most of all, we loved God as we loved each other.
Posted in Barnes Jewish Hospital, Brain Biopsy, Brain Tumor, Diagnosis, Glioblastoma | 10 Comments

Chapter 3 – It was the beginning of a long storm.

…Tropical storms or hurricanes can last for days and days, as long they stay over open water. Hurricanes can often live for a long period of time—as much as two to three weeksSource

It became a whirlwind of doctors from almost every body system. Neurologists, Oncologists, Renal, Infectious Disease; you name it, we had it.  At this point I remember thinking that deep down all of these people really wanted to help Roger.  Really, they did. But sometimes I felt like they were looking at him as a new toy, a new challenge, a new puzzle, a new project.  I understood that they saw so many people and managed so many cases, and it was their job to assess, diagnose, hypothesize, and treat.  But there were so many people looking at the mechanics of his body and not at his spirit.

I don’t mean that they didn’t care; they did.  They were concerned.  They just had a huge workload.  I don’t have a recommendation or solution to this.  It’s just the nature of things.

From the beginning, Roger never had a seizure that we were aware of.  He never had any stroke-like symptoms.  I became more thankful of this as things progressed.  In fact, it was one of my blessings I counted each day.

They put him on anti-seizure meds “just in case.”

By July 20th we had met the Oncologist.  Dr. Hess said that because Roger was a transplant recipient, he was predisposed to infection and cancer because of the anti-rejection drugs he was on.

Why didn’t I process this piece of information better when we first received it? Sure, I knew that he shouldn’t shake hands with sick people.  He shouldn’t stay out in the sun too long because he might get skin cancer.  He should avoid germs because his resistance would always be down.  Maybe I was so elated about getting the liver that all of those future “bad case scenarios” didn’t hang over my head like the sword of Damocles.  Little by little it was sinking in.  Roger was about to be diagnosed with some sort of brain cancer, and our lives would be changed forever.

Roger asked, “Doc, could this be just the way I am?  The way I scan on MRIs? I understand the light and dark on my scan.  Could this be just an anomaly? Could it just be a fluke?”

The doctor answered. “No. If 100,000 people on the street were scanned, the likelihood that 100 would have scans like Roger’s and not have a tumor would be extremely low.  It is highly unlikely that this is just a fluke. We need to biopsy to get confirmation, but I think it is glioblastoma or lymphoma.”

There.  It was said.  It was out in the open and like Pandora’s Box, there was no stuffing it back in.

  • The infectious disease doctor said that it was most likely not an infection, but they also suggested a biopsy would give the definitive answer.
  • The kidney people were concerned about the dye in the MRI.  Roger’s kidneys were typically damaged from all of the stress during the transplant; they explained that there might be a permanent skin rash with the contrast dye.
  • The neurology team said that the tumor looked like it was left frontal, behind the eye. It might not be possible to biopsy; the neurosurgeons would have to decide.
  • What we learned:  The neurologist is not the same as a neurosurgeon.  One diagnoses, the other actually does the surgery. In the pecking order, the neurosurgeon is top dog.

I said that we didn’t want to leave the hospital without a diagnosis, and they agreed whole heartedly. Roger shared with many doctors that he was not afraid to die, having made his salvation sure when he was 16.

On July 21, Roger was very aware that this might be serious and told the neuro team that he understood this. They were glad that he understood. He was having a great day and just wanted to get out of the hospital. Time goes slow when you just sit. They planned to do the biopsy this day; however it’s like waiting in an airplane on the tarmac to take off….you just have to wait your turn for an opening.

Some funnies:

  • PT guy asked him to twirl about two different directions. We thought he was going to proceed to “step-bump, step-bump, kickball chain, kickball chain” like the trooper that was checking to see if a driver was drunk.
  • One neurologist had him doing the famous (or infamous, depending on your viewpoint) subtracting backwards, and other stuff with numbers. When Roger said he just couldn’t do it and that he wasn’t good with numbers, the doctor asked him what he did for a living. “I’m an IRS auditor.” We all cracked up.  Here’s a video of Roger trying to say the months of the year backwards.  Click here.

July 22nd brought this answer:  No infection.

I have decided that students and residents who walk around the halls with their attending physician look like a mama duck and her ducklings.

A PET scan was ordered before the biopsy, and it would look for sugar in the body system. The team of ducklings explained everything and left, assuming that the PET scan would be later that afternoon.  One duckling immediately returned and said in a thick foreign accent, “All we are so very sorry.  The drip that you are on for fluids has sugar in it.  Too bad.  You have to have scan tomorrow.”

By this time we were getting frustrated with the pace of everything.  It appeared to us that the biopsy was being delayed and that meant a delay in the official diagnosis and treatment.  I shared that with the doctor and she agreed, adding to remember that it is quicker to get tests completed in the hospital rather than as an outpatient.

I hope you have picked up on how bored we were in the hospital.  At the beginning Roger was not attached to any machines, so he could get up and roam. In fact he kept his regular clothes on most of the time.  To help pass the time I decided to play a card game with him. I picked Phase 10, and to this day I’m not sure that it was the best choice.  Imagine explaining the rules to a real complicated and lengthy game to a man who 1) doesn’t like card games to begin with, and 2) has short term memory loss.  Yup.  You just smiled, didn’t you?  We had the nurses and techs in stitches.

Phase 10 1Phase 10 2

The neurosurgeon came in and established rapport with us.  Dr. Dunn was very personable and treated Roger like he was his father.  That was comforting.  The plan was to do the biopsy soon; however, there was some discussion on whether to do an MRI with contrast or not. Here’s a video that will show how confused we were with this process.

Later that afternoon, Roger said that he thought we were walking around St. Louis in the afternoon.  He asked how we were going to pay for the hospital room, wondering if the church would pay any of it. His mind was still mixed up.

On July 23rd they decided to do a lumbar puncture.  As Roger read the bottom line for signing the permission, he saw, “I have read the above information and understand it,” to which he said, “Wait!  I haven’t read it.”  So the duckling-doctor said, “I’ll be glad to read it to you.”  And she did. EVERY. SINGLE. WORD. I bet they won’t forget him.

This journal entry shows that I had some insight into the future:

“I am tired, and I just can’t help but think this is just the beginning of a chronic tired I will be in the next months.”

There was some hesitation about performing the biopsy.  There was a obvious risk, and the neurosurgeon said if Roger were his dad, he would 100% wait to do the biopsy.  He said, “No surgery is the best surgery.” If they can get the information they need through a lumbar puncture, then that’s good.

To break up this narrative I added some pictures.  Click on them to enlarge and enjoy!

Another funny:

There were cameras in each room on our floor because patients were in various stages of impaired mental capacity. Lisa was playing her ukulele, and Roger had just come out of the bathroom. He began busting a move and kept it up long enough for the “all seeing eye in the ceiling” to come over the intercom with “I see you Mr. Weldy…dancing in there!” Oh, we had THE biggest laugh over that. Watch Roger “bustin’ a move” here.

On July 25th the surgeons said it appeared that the lumbar puncture did not yield enough cells to make a determination about what was going on in Roger’s brain. Roger’s anatomy made it a difficult procedure. So, the lesions in his brain were to be biopsied late Monday morning. The surgeon said that he would work with the pathologist and take as much tissue as necessary to make a diagnosis.

He also said not to make any assumptions until we had the results. I told him that the Internet gave anyone enough information to make a diagnosis about anything, and though we had searched things, we were trying to be ignorant about the possibilities. We still remained upbeat and had a good testimony of how God kept us calm in the storms of life, though we were certainly aware of the potential gravity of the situation.  Psalm 18:6: In my distress I called upon the LORD, and cried unto my God: he heard my voice out of his temple, and my cry came before him, even into his ears

The next day I arrived to find that things were worse with his mind.  He seemed paranoid, wanting to prop a chair against the door so people couldn’t come in. BradshawsOur good friends, the Bradshaws, came to visit, but I wasn’t sure Roger really knew who they were.  He did talk about getting the music list ready for church.

GW SW music manI had a nice diversion that evening. Lisa stayed with Roger, and Scott took me to see “Music Man,” a community theater performance.  When I returned, Lisa said that she thought Roger was gradually getting worse. He wanted to give food service his urine, and he even told her to “back off” twice.

The next morning I woke up feeling that my husband had died.  Not physically, but mentally.  He was gone and I would never get that old Roger back until we were in heaven together.  I felt numb about it, but my mind also strayed to the “what if’s,” and “how do I plan for the future?”  Roger has repeatedly said that he wasn’t afraid to die.  So that’s ok.  It’s the non-living that I’m worried about.

Posted in Barnes Jewish Hospital, Brain Biopsy, Brain Tumor, Card Games, Diagnosis, Glioblastoma, MRI | Leave a comment

Chapter 2 – Fear in the Storm

What frightens you?  The sound of thunder can send a chill down to the very marrow of your bones, splitting asunder your usually calm exterior and leaving you trembling, afraid, and in need of flight. (from http://www.wikihow.com/Face-Your-Fear-of-Thunderstorms)

I pondered our appointment with Roger’s primary care doctor, and I was still unsettled, wondering just what was going on with Roger’s mind.  But we continued with our newly retired life, keeping our scheduled appointments.  I had signed up to give blood on July 15th. Roger had an appointment with his foot doctor in Springfield, and we were going to go our separate ways.  At noon Roger told me that he didn’t feel too well, and I said that I would cancel the blood donation and go with him.  I got in the shower, and the next thing I heard was, “I’m heading to Springfield.  I’ll see you later.”

Well, I didn’t think too much of it and gave my blood donation at the Red Cross. After I was done, I called Roger to see how he was doing, and the call went to his voice mail.   I drove home and tried to call him again.  Still no answer.  By 4:00 I was concerned and decided to use the “find-a-phone” app. You can imagine my shock when I found his phone “pinging” 30 miles from home on the Sangamon River Bridge.

I jumped into the car, speeding, praying and crying, begging God to let me find him ok.  I imagined him actually in the Sangamon River as the result of some accident.  Twenty minutes later I was relieved to find the car on the bridge heading west and Roger sitting in it.  I pulled up, got out of the car, and checked to see if he was ok. I remember telling him how worried I was about him, and I remember that he couldn’t tell me how he got there.  He had vomited but didn’t seem sick.  He didn’t even know what day it was. The car’s two right tires were flat—shredded to pieces.

IMG_5439IMG_5441

I called AAA, and they sent a tow truck to take the vehicle back to Decatur.  During our wait, I tried to piece together the puzzle of how he arrived on the bridge facing west when his appointment was even further west at 1:00 pm.  I eventually used the clues on fast food receipts to find that he traveled 15 miles beyond the doctor, turned around and traveled another 30 miles north, and then turned south for another 20 miles to travel west.  I don’t think we will ever find out how he damaged the car.  At that point I was just grateful that he was alive and well.  I just didn’t realize how sick he really was.

The next day I called our primary care doctor and explained what had happened with the car and his memory.  She suggested that we go to the ER immediately, so we did.  Roger was asked the question that he would hear so many times during the next few weeks:  “What brought you to the hospital, Mr. Weldy?”  His standard reply: “I don’t know.  My wife thinks there is something wrong with my mind or that I am crazy.  I feel great.”  He had a CT scan and an MRI that evening, and the ER doctor said that there could be a possible tumor on the brain.  He wasn’t sure, and he made an appointment with a local neurologist for a better opinion.

When all of this began, I’ll admit I was afraid.  Afraid that Roger had beginning stages of Alzheimer’s.  This sounds horrible, I know, but I was actually relieved when that was not the diagnosis.  I told myself that I didn’t want him to have a brain tumor, but I just didn’t think I could handle a slow agonizing death with Alzheimer’s. I was willing to accept it, but my flesh was sure having a pity party thinking, “Oh, great.  We just retired and now I have ten long years of taking care of my husband as he faces a slow and agonizing death.”  It was hard to know how to pray.  I guess it was then in my heart that I prayed for mercy. Hebrews 14:6  Let us therefore come boldly until the throne of grace, that we may obtain mercy, and find grace to help in time of need.

So we are back where this blog started:  I finally stopped driving around on July 18th, trying to avoid the inevitable, and we met with the neurologist.  He showed us the MRI and explained that Roger’s frontal lobe was impacted :  there was lots of light gray where it should be dark.  The mass was embedded throughout the brain, not centralized, but mainly in the right frontal lobe.  The doctor looked at me and said, “Roger shouldn’t drive.  And remember, Roger doesn’t know that he doesn’t know he is sick.”  In the back of my mind I logged the doctor’s opinion:  “Sometimes this happens with transplant patients who are on anti-rejection medicine.”

Our transplant coordinator called and said to go to Barnes-Jewish ER, and tell them that Roger had sudden onset acute mental state confusion. We were to make sure that they knew he was a liver transplant recipient and that renal doctors were also dealing with his kidneys.

I rented a car (you’ll remember that ours was being repaired because of the shredded tires) and we journeyed to Barnes.  We spent eight hours (from 4:00 – midnight) in the ER.  It seemed long, but they did their best to run necessary preliminary tests.  Our son, Scott, who lives in the St. Louis area met us there and sat through many tests and screenings performed on Roger.  We actually heard so many “neuro” screenings that we became proficient on asking the questions ourselves, contemplating becoming neurologists in our spare time!

  • Who is the president?
  • Do you know where you are?
  • Do you know what year it is?
  • Do you know what day it is?
  • Can you count backwards from 100 by 7’s
  • Can you say the months of the year backwards?
  • Grab my hands.  Push real hard.  Now pull hard.
  • Look at my finger.  Follow it with your eyes.
  • And on and on…

Roger was admitted at 1:00 a.m.

 

 

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