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.

 

This entry was posted in Brain Tumor, Family, Foundaton, Glioblastoma, Radiation, Shingles. Bookmark the permalink.

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