Thursday, June 30, 2011

Just in case anybody is still checking here

I don't know if anybody is checking here occasionally, but thought I'd fill you in, in case anyone is here.
Glenn has been  his usual tired for the last few weeks, although he doesn't sleep as much during the day as he did when he first got home. He takes a 15 minute walk each morning before the sun comes up, makes his breakfast then sleeps for a few more hours. He can have visitors, and has had several. On Father's Day all three kids and the granddaughter were over for a while, one Sunday we took a big risk to have 7 people from church over, (Glenn wore a mask for those two visits), and this week we had our friends over who we met in G'ville who had the same kind of treatment there at the same time Glenn did, so we got to commiserate together and compare experiences.
We go to the nephrologist tomorrow to see what Glenn's lab work shows, which I am very eager to see. When we were in G'ville, Glenn's blood was drawn every night and reported first thing every morning which gave us some security to know what his condition was doing. With Glenn being so tired still, I am eager to know if he is anemic or if he is recovering normally. I am also anxious to go to the oncologist here to see how she feels he is doing. We didn't realize he was supposed to be followed up here with his oncologist until I called to find out.  We were probably told to but it didn't stick in the brains. When Glenn was being given discharge directions, he was just finishing getting platelets and we were in a rush to get to the Hope Lodge before we lost the room, so I failed to take notes. So we will be following up as soon as we can get in there.
And I'll let you all know what we find out. Thank you so much for caring to keep up with him.

Saturday, June 18, 2011

A quiet week

This week for Glenn was another week of resting, sleeping and eating, with a little bit of work sprinkled in. He can sit for about a half hour at the computer before he has to lay down and rest and/or sleep again. He talked to the SS office to see if he qualifies for SSI, but he was told that we make too much. So I guess to qualify you have to live in a nice, paid for, tent and have no car payment. He is now applying for disability. That requires that you are going to be disabled for at least a year. So we need to get letters from the Dr.s to verify that. That's a new prayer request--(not that he is disabled for a year but) that he will be approved for disability---soon.
That same day we had to do a couple errands for him, and then I took him to the furniture store for him to pick out a recliner for Father's Day/60th birthday from the kids and me. He had to be "fitted" for one that was  comfortable. He picked one out and it will be here in about a month. He wanted something he could rest in but not be on the couch all the time.
I am curious to know what his lab values are. When he was in the hospital we got a report everyday which gave me a sort of security that we knew where he was all the time. But we won't know what his labs are for another couple weeks. His blood  pressure is not what would be considered normal, but is at an acceptable level, controlled by four blood pressure meds. One good thing is that his swelling and edema have stabilized without any medications.
So he is just resting at home, holed up from everybody to avoid any exposure from infections, and because he just doesn't feel like doing anything else for now.

Friday, June 10, 2011

No title because there's no brain energy

We've been home for a week now and  it's been quite uneventful. So I'm writing to let you know that there is nothing to tell. Really. Glenn has been tired and resting pretty much all week. He has probably been in his office for a total of maybe one hour. He says he hasn't had  a single idea. If you know him you know that there had to have been a part of his brain that was greatly affected or the idea cells must have been in his hair, since that's gone, too. Just a guess.
And now I know that sympathy pains are real. I've been inexplicably exhausted ever since we got home, with no relief yet. I feel like Glenn says he feels. I don't have any creative thoughts, so that's all for tonight.

Sunday, June 5, 2011

Home again, home again.....

You may have noticed that there was silence here yesterday. We were quite busy packing, cleaning our room, saying good by to new friends, including the turtles and gators at Hope Lodge, and coming home, unpacking, then having our sons and granddaughter and some of their friends over. Whew! It was quite tiring for us both: Glenn was worn out from just watching and riding home in the car, ( he was not allowed to do any of the physical work. nor did he have the strength to do any). It's a lot of activity for him.
We are still battling the edema in his legs and are anxious to get back to the nephrologist to get his meds straightened out for his kidney disease.
For Glenn, leaving was really not a big deal. It was just time to go. On the other hand, as many of you know, I am not a crier. BUT yesterday brought the tears; we were leaving our security, our new friends with whom we shared the process of a significant life challenge: sitting up at night drinking coffee, playing solitaire, putting puzzles together, meals fixed and shared together, Dr. appointments, treatments, infusions, postponed discharge dates, meeting each others' visiting families and friends, and more. For me, it has been an experience that has left a deep impression on my heart. So much comfort during a difficult time, that made it easier to go through. We'll keep in touch with some of the new friends, but it won't be the same as living together every day and sharing our lives. Needless to say, we bonded with each other in a relatively short time. I believe it had a greater impact on Glenn than he realizes.
I probably won't be posting here every day, now that we are home, but I will keep you all  up to date on Glenn's health, as we go to the Dr. each time and the results of those visits. We aren't at all finished with this process and will see, in the next few months, what the impact of his treatment has been. So keep checking the blog and you can keep up with how he's doing. Knowing that so many people have cared enough to keep up with him here has been very encouraging for us. Keep in touch and so will we.
P.S. The Mah Jongg ladies did a fantastic job cleaning our condo before we got home, and provided groceries for us when we returned home. I hope that we are able to do for others as you have so graciously done for us.

Friday, June 3, 2011

Homeward bound

Glenn's Dr. visit this morning went well. He told Glenn that he can go home, and we could go right over to get his central line removed. Kind of funny because Glenn and I looked at each other in surprise; we were expecting to go home soon but I  guess we expected to be told that we would have to schedule the line removal for next week, but they had already taken care of that for us. So we went right over and got that done. Then we celebrated by going to Wendy's for hamburgers and fries, which we haven't had in a long time. (Next to the cafeteria is a small food court with Wendy's and a few other food places.) The salt hasn't helped his edema at all, but, he can just take some more lasix ;-) . Our eating habits have been "have what you want and what is available" so when we get home it's back to healthy eating, although Glenn isn't supposed to do any dieting right now.  
I forgot to share about the little girl I met yesterday, and her mother. Mom came in first and was given some forms to fill out. She had a scarf on to cover up her bald head, and she had a line like Glenn's only in her upper arm, which probably means that they are exhausting many of the other sites to use. She was having a very hard time seeing what she was reading, and at the same time was falling asleep while she was filling out the form. Then her little girl and grandma came in. That little girl looked a lot like Shirley Temple with her head full of curls. One lady smiled at her and asked her what her name was, but the little girl just stared at her like she was trying to figure out what that lady was. Then she came over and sat down next to me and asked my my name, and the name of the man sitting next to me, (who was not Glenn). I told her his name was Skip (we know him from the Hope Lodge). She said no and pointed to her mom and said "that's Skip". I guess her mom's name was Skip. I asked her what her name was and she said, "Me Katie". She gave me her little neon green wrist band that had a peace symbol on it and said, "Don't lost it. And don't let the dog bite it." She did a lot of other cute things for all of us. But what was notable to me was that she seemed to be oblivious to her mother's seemingly serious condition. She just played and talked to her mom as any little child does, asking for juice, etc. It was really sad that there is a strong possibility that her mom won't see her grow up. And the grandma, how she must be feeling. You always forget your problems when you see someone else in a much worse situation. There are just so many experiences when you go through  this kind of thing. I hope it all is etched in my mind and heart so I don't lose the lessons learned.
Anyway, we will be going back home tomorrow and start the new adjustment to "normal" life. Prayerfully with  many lessons learned and hearts transformed to be more like our brother, Jesus.

Thursday, June 2, 2011

Looking ahead to going home

I didn't make an entry here last night because yesterday was pretty uneventful. Today Glenn had an appointment at the clinic to see what his labs showed. He still has some out of whack, but we are tweaking his meds to try to fix that. But most of it looks good. He goes back tomorrow morning to get rechecked. The P.A. (physician's assistant) feels like he should be ready to be discharged. But, we have to see if he can get his central line removed tomorrow, or if we will have to wait until the beginning of next week. (One day at a time, remember?)
Glenn slept much better last night and was up a lot of the day today. That's a big improvement. He took an anti-nausea medicine with his nightly hoard of pills and we think that might have helped him sleep for 6 hours straight. He was able to go back to sleep again and sleep another couple hours. We're wondering if that is what made the difference, or if his body is just making so many good cells to replace the ones that were destroyed with the chemotherapy that he is feeling the good effects. Whatever it is, he was glad to be awake and up for a lot of the day. We had a visitor from Jax this afternoon. It was so nice to see him, (an elder and great friend from church) He was playing hooky from work, but don't tell him that because he is his own boss and we don't want him to get in trouble with his boss.
Seems like several people here are being discharged tomorrow and a new round of residents and caregivers is coming. I was wondering if the new people would make friends here, but this afternoon I saw some bonding happening. Good to see. I feel like I'm kind of a "mom" for the new ones, (even though several are older than I am), and want to make sure they adjust well and have a good experience here, as we have. We have gotten accustomed to life here and it's going to be another adjustment going home again. As I have expressed before, we have made friends here with whom we have a common bond and speak the same "language". We will be making the adjustment back to "normal" life and that's a little scary. Here, we aren't shocked to see each other with bald heads with hats to keep them warm, burn  marks on faces and necks from radiation therapy, having conversations with people who can't talk because of damage from cancer and treatment, darkened skin from chemotherapy, bodies wasting away while hoping to beat their disease. It's all "normal" here. Out there everyone looks pretty healthy so we look kind of freaky and different. We walk slow and humped over from weakness, sometimes finding the energy to smile. So that's why we feel a little insecure leaving here. Plus, we have the medical care just up the road in case of any unforeseen change. They are familiar with us and our diseases and know what to do. But, I'm sure we will learn to adjust back to "normal" life outside of our cocoon here. Just know that when you see us, we are still the same people you knew before we came here; we're still the same inside even if we look a different on the outside.