Today was a very rough, emotional day for me. I spent the morning procrastinating my run (per usual), and when I finally get dressed to run, my mom called. She told me that she got a call from "C" at Mark's group home, and it turns out that Mark isn't doing very well. His health went downhill very quickly once he was back home. C said that the doctor was going to go to the home to check on him, so I wanted to get there to hear what the doctor had to say.
I changed clothes as quickly as I could, and rushed out the door. When I got there, Mark was sleeping, so I talked to C for about an hour while we waited for the doctor to get there. She told me what was going on with Mark--he can't get up and walk, even with his walker, he's constantly sleeping, and he was having trouble swallowing. His memory seemed a little fuzzy, and some of the things he's said to her have been "off".
I had attributed the sleepiness and lethargy to his pain medication; but C said that she had cut back on his pain meds, because she thought the same thing. His pain felt worse, but it didn't help with his lethargy or anything else. The only thing that I can think of is that Mark was SO determined to go home, and he worked really hard to be able to go home; and once he got there, maybe he just gave up. He's happy to be home, and now he can just relax.
After talking to C for a while, we checked on Mark again, and he was awake. He looked SO tired and pale. He couldn't keep his eyes open long enough to really talk to me. He did say he was glad to see me, like always, and when I asked how he was feeling, he said, "Great". He's afraid to tell anyone when he doesn't feel well because he thinks he'll have to go back to the hospital.
The doctor came and checked him out, basically confirming what we already knew. He wrote prescriptions for the pain meds that Mark needs, but that was all he could really do. We need to hear from Mark's oncologist to know where the cancer stands, but in reality, there isn't anything else to do except make Mark comfortable. He called to have a hospice nurse go out and evaluate Mark, to see if he's ready for hospice (the nurse will estimate how long he has to live, and if it's less than six months, then he would qualify for hospice). The nurse should be going tomorrow, I hope. We'll know more once we find out if he's ready for hospice.
In writing about all this, it seems so matter-of-fact, but I had a REALLY tough day. I cried the whole way to the group home, and the whole way home. I tried to run on the treadmill, but only made it a half-mile before crying again and giving up. I cried in the shower. I cried when Jerry got home, and I told him the whole story. The whole evening has felt like I've been in a fog. When Mark went home a couple of days ago, I felt some sort of hope that he'd have another year or two. I never expected to get this call so soon.
I don't think Mark knows that he doesn't have much time left. I could barely understand what he was saying today, but I did hear him say something about fishing with my dad. I'd hoped that he would be able to go fishing one last time.
Something that completely broke my heart today was when C and I were talking in Mark's room. We said how hard Mark worked to be able to go home; that he went to physical and occupational therapy every day and worked through the pain. And he did it! He was home. I thought Mark was sleeping while we were talking about this, but then he said, very weakly, with his eyes still closed, "See? I did something..."
He was really proud of himself for doing it. Mark has always enjoyed his chores and when people ask him for help with something, and I think it's because he likes feeling needed. It gives him a purpose. When he was in the nursing home, he couldn't wait to go home and do chores like sweeping the floors. When he said today that he "did something", I just felt so sad; I hope he realizes that he's done SO MUCH MORE than I could ever explain.
All of this makes me scared. I'm scared about what's happening with Mark. I'm scared about being a primary caretaker for him if it comes to hospice care at my parents' house. I'm scared he's going to be in pain. I'm scared to tell him that his cancer isn't gone.
I know this sounds totally selfish here, but I'm even scared of what all this is going to do to my weight. I skipped my run today, and I could probably count on one hand the number of times I've skipped a run for no "real" reason. I'm an emotional eater, so I'm scared that this is going to make me want to eat everything in sight.
I didn't want this to be such a downer of a post, but it's hard to think positively about any of it right now. I know a lot of you look forward to updates about Mark, so I wanted to fill you in on what's going on. Thanks for the prayers and positive thoughts you've sent his way!
The doctor came and checked him out, basically confirming what we already knew. He wrote prescriptions for the pain meds that Mark needs, but that was all he could really do. We need to hear from Mark's oncologist to know where the cancer stands, but in reality, there isn't anything else to do except make Mark comfortable. He called to have a hospice nurse go out and evaluate Mark, to see if he's ready for hospice (the nurse will estimate how long he has to live, and if it's less than six months, then he would qualify for hospice). The nurse should be going tomorrow, I hope. We'll know more once we find out if he's ready for hospice.
In writing about all this, it seems so matter-of-fact, but I had a REALLY tough day. I cried the whole way to the group home, and the whole way home. I tried to run on the treadmill, but only made it a half-mile before crying again and giving up. I cried in the shower. I cried when Jerry got home, and I told him the whole story. The whole evening has felt like I've been in a fog. When Mark went home a couple of days ago, I felt some sort of hope that he'd have another year or two. I never expected to get this call so soon.
I don't think Mark knows that he doesn't have much time left. I could barely understand what he was saying today, but I did hear him say something about fishing with my dad. I'd hoped that he would be able to go fishing one last time.
Something that completely broke my heart today was when C and I were talking in Mark's room. We said how hard Mark worked to be able to go home; that he went to physical and occupational therapy every day and worked through the pain. And he did it! He was home. I thought Mark was sleeping while we were talking about this, but then he said, very weakly, with his eyes still closed, "See? I did something..."
He was really proud of himself for doing it. Mark has always enjoyed his chores and when people ask him for help with something, and I think it's because he likes feeling needed. It gives him a purpose. When he was in the nursing home, he couldn't wait to go home and do chores like sweeping the floors. When he said today that he "did something", I just felt so sad; I hope he realizes that he's done SO MUCH MORE than I could ever explain.
All of this makes me scared. I'm scared about what's happening with Mark. I'm scared about being a primary caretaker for him if it comes to hospice care at my parents' house. I'm scared he's going to be in pain. I'm scared to tell him that his cancer isn't gone.
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| I just found this pic of him with my sister's dogs from several years ago |
I know this sounds totally selfish here, but I'm even scared of what all this is going to do to my weight. I skipped my run today, and I could probably count on one hand the number of times I've skipped a run for no "real" reason. I'm an emotional eater, so I'm scared that this is going to make me want to eat everything in sight.
I didn't want this to be such a downer of a post, but it's hard to think positively about any of it right now. I know a lot of you look forward to updates about Mark, so I wanted to fill you in on what's going on. Thanks for the prayers and positive thoughts you've sent his way!



























