David (and my response to sadinholland)

cindysuetoyou said:

Thank you
Thank you to everyone who replied and encouraged me with their concern and care. It means a lot to me. I feel isolated because I am staying home so much and reading your posts makes me feel like I am not so alone.

About 2 1/2, 3 weeks ago, I had to drag David up to Portland (an hour drive) to see that palliative care doctor again. I couldn't get out of it. If we want pain medicine (and David needs pain medicine), we have to see that dr. He is the one who handles pain management, not our NO. So we headed up there 2 hours early so we could go to David's favorite sushi place for lunch, then go to the appt and then be back on the freeway before the traffic got bad. Good plan….but there was a wreck on the freeway and we were at a complete stop for a long time. We ended up reaching the hospital with just a few minutes to spare before our appt. David wanted me to drop him off at the elevator lobby in the parking lot because he felt too weak to walk very far. I had a bad feeling because David is not trustworthy…he could totally wander off or go to the bathroom or go on to the appt without me. But I did it anyway, and I told him to STAY THERE….in the glassed-in area of the parking lot in front of the elevators. I parked and ran to meet him, and as I ran up, I saw that he had his pants open and unzipped. I ran up to him and said, "No, David!!!! No, you cannot pee right here!" (We both had to go really bad because we had large Starbucks drinks on the ride and we were stuck in traffic for so long.) David said, "Too late." I looked around surreptitiously and didn't see a mark on the concrete anywhere. I said, "Where did you go?" He said, "Right here," and he handed me his full Starbucks cup. In retrospect, it's slightly funny, but at the time, I was horrified that he peed out in public in front of masses of people getting off and on the elevators. I took the cup and was like, what am I going to do with this? I saw a huge dumpster and I just chucked it in there. I felt bad but I didn't know what else to do with it. We were a long way from any bathrooms.

So we went on to the appt and it was bad. Bad for me, maybe not that bad for David. I can't tell how things are affecting him. He does not show any emotion whatsoever….maybe that's a blessing in disguise. The dr asked David what he would like to do. David said, "I'd really like to play basketball again. I dream about it every night." I covered my eyes with my hand and I tried so hard to keep my emotions suppressed, in check…I tried so hard that I thought I was going to have a heart attack. I got all sweaty and I heard a roaring in my ears and I got lightheaded….and then I started crying without moving or making any noise. I had hot molten tears running out in a steady pour with no break in them. I said really quietly to the dr, "I'm dying inside." I think I felt worse than I might feel if David just died outright. Idk maybe I am just fooling myself. I just know that the emotional pain was almost more than I could bear. The doctor and his student dr that was observing just said some trite stuff that didn't help, and David looked at me and put his hand on my shoulder. I don't know if he knew why I was crying. Anyway, the visit didn't help--it only stirred up pain for me--but the dr did give me a huge prescription for pain meds for David. He also told David that he needed to get out and do stuff that he enjoyed. He needed to play and to laugh. Good luck with that.

So we got lunch and took it back to David's apartment which I didn't want to do. I don't want to go to David's apartment and then have to make him leave. We ate and he asked if he could lay down until the traffic got better. I said sure. When it was time to wake him up to leave, I had this thought…I wondered when he woke up, if he would feel like it was all a bad dream, and everything was all right and he was home in his apartment that he loves and healthy and everything would be okay. I got so upset and I could not quit crying. It's like once I get started, I can't get a grip. So I woke David up and I was standing outside his bedroom trying to hide the fact that I'd been crying, and I heard a thump and I ran in there, and he was on the floor having a tonic clonic (grand mal) seizure. I just started crying really hard and I was so shook up that when I called 911 I couldn't remember his address or anything. So the paramedics came and transported him to OHSU's ER, they did a CT and it didn't show any medical emergency that needed immediate treatment, so we ended up going back to Salem around 3 am. We were in the ER for about 7 hours. I was so drained by the time we got home that it was hard for me to walk, much less help David into the house and into bed.

The CT showed a slight reduction in the overall mass effect. I guess that's good because they didn't even expect to see any changes for two months. But I am not all that excited because David is so sick and impaired.

The next day, David called a friend and they went to watch a bb game. It was with the league that David played in (and dominated) back in the day. David didn't realize that the game was about to start, and he went out on the court to make a few shots like everyone does before a game. The gym got really quiet because everyone knows David and what he is going through. He took two steps towards the basket and he fell down on his stomach. His legs are so weak---they just gave out on him. A bunch of people ran out and helped him up and they passed the ball to him while he stood under the hoop. He couldn't even throw the ball high enough to brush the net. I wasn't there but I heard all about it from several different people. I don't think David realized that he was that bad. The whole thing made me cry super hard again for a long time.

So a few days later, I took David back to that gym (I have keys) and the two of us stood under the basket and I rebounded for him and he took about 50 shots. He finally made two of them. I jumped up and down and screamed and yelled and he smiled. That was on Tuesday and he is still worn out from it. He hasn't felt like going back yet. He gets Avastin on Tuesday if his counts are okay, so we may not make it back to that gym for a while.

He has started with another issue. He is having a lot of trouble swallowing his pills. I have to put each one of them in pudding and even with that, it's a battle. He can eat food normally….it's just when he has to concentrate on swallowing pills. He takes 8 pills in the am and 6 at night, and pain pills in between. Idk why he's having this trouble. Is the tumor encroaching on the part of his brain that controls swallowing? He had this problem before when he had brain swelling from the BBBD.

He is also wetting and having bms in his pants. At first it was in his sleep (wetting) but now he did it when he was up and eating at the dinner table. He also feels a bm coming but can't get to the toilet in time. I tell him no big deal, it will only take me 5 to 15 minutes to clean up and it will be like it never happened. I have a good system to clean up but it takes a lot out of me and I don't have enough clean sheets etc to handle multiple accidents. I'm worn out. He doesn't do this all the time, though. But lately it's been more often…..

He falls a lot and he is covered in bruises. He has bruises on the inside of his elbows, the top of his forearms, his wrists and the back of his hands from IV's. Also a wicked one on his chest from where they accessed his port for chemo two weeks ago. The paramedics had trouble getting one started and they tried a bunch of different spots. He has bruises on his chin, shins, knees, elbows and hip from falls. He has a mass of bloody purple bruises on his stomach from the 2x a day enoxaparin shots. He has horrible stretch marks like I've never seen, on his hips and behind his armpits. The ones on his hips look like they are bleeding under the skin, and the one behind his armpit is so deep, like a little canyon. I can barely look at them--they look so bad. It's because of the weight gain from the steroids. He takes 12 mg a day. His face is so puffy that some family members didn't recognize him on Easter. He has a huge pot belly like a basketball and he stands funny, with his stomach kind of thrust out. He is unrecognizable from how he used to be…so slim and lean and ripped. Smiling and joking and loving and happy…..

He is so weak that he can barely walk from the bedroom to the kitchen for meals. I try to make him do it because I know that the more time he spends in bed, the weaker he will be. But it's hard for me to force him to get up and do stuff when he does NOT want to. It's not because he's depressed…it's because he feels so sick and miserable and weak. But he is depressed too.

I asked him if he was annoyed with me and he didn't answer. I said that I wouldn't be mad or hurt, I just wanted to know so I could stop doing whatever was annoying him. I talk so gently to him….I am amazed at how patient I am. I was always such an impatient person….but I'm never impatient with David. I was giving him his shot when I asked him if he was annoyed with me, and he said, "Well, this doesn't help." I said, 'I know, David, and I hate it. But I have to do it." He said, "It's not anything you are doing. I just want to go home." I had to leave his room so he wouldn't see me melt down. He is never ever going to go home.

Now my husband is pressuring me to agree to give up David's apartment. They just raised his rent again. He hasn't stayed there since December. I am not rational about it and I refuse to consider it. I don't give a XXXX about the money. I could light a match to it and be happy about it. I just cannot take that hope and dream away from David. My husband backed off. I think he's nervous that I am cracking up. I finally told my husband that I would carefully bring it up and ASK David if' he'd like to give up his apartment for a time and get it back later, and if David was okay with that, then okay. But I WILL NOT put any pressure on David. I may be a fool and a jerk and I know from a money point of view, it's stupid (we are really broke these days) but I don't care. I just can't go there right now….the thought of moving his stuff out and leaving there for the last time makes me cry….everything makes me cry, I guess.

David has a wicked cough right now, and a runny nose. The seizure dr told us that an infection could very easily trigger a seizure. So I am on even bigger pins and needles, running down the hall every time I hear any thumps or bumps. I am driving myself crazy doing it. I'm also concerned that he won't be able to get treated on Tuesday.

Well, now that I have shared what a nutcase I am, I am going to say that I am okay, and I will survive this. I had a little epiphany….it's possible to believe in God, to trust God fully, to believe in eternity, to believe that David will be in Heaven if/when he dies, to believe that I will see him again one day, to believe that it's going to be okay even if/when David dies…it's possible to believe all these things and still cry a lot and be absolutely sick with grief. I mean, how can anyone see their son wither away in front of their eyes and not be heartbroken and cry a lot? I know that God understands and feels my pain and that He grieves for me and for David too.

Please don't think I'm a hypocrite…..but I read this incredible Scripture the other day. It's talking about the coming birth of Christ…"Because of God's tender mercy, the morning light from Heaven is about to break upon us, to give light to those who sit in darkness and in the shadow of death, and to guide us to the path of peace. (Luke 1:78-79 NLT) I was shocked by how much this Scripture speaks to me. I feel like I am sitting in the shadow of death, and I want to be on a path of peace. I think this is a beautiful Scripture and it brings peace to me. I need to read it every 30 minutes, I guess.

Thank you again for your concern and support. I know that you can all relate to what I'm going through and that you all are going through the same anguish, grief and heartbreak as I am. I feel like you guys are handling it better than I am, but maybe that's because I share every emotion and thought that passes through my mind, and most of you have more restraint.

Love, blessings, strength and peace to all of you (and me too),
Cindy

cindysuetoyou said:

Thank you
Thank you to everyone who replied and encouraged me with their concern and care. It means a lot to me. I feel isolated because I am staying home so much and reading your posts makes me feel like I am not so alone.

About 2 1/2, 3 weeks ago, I had to drag David up to Portland (an hour drive) to see that palliative care doctor again. I couldn't get out of it. If we want pain medicine (and David needs pain medicine), we have to see that dr. He is the one who handles pain management, not our NO. So we headed up there 2 hours early so we could go to David's favorite sushi place for lunch, then go to the appt and then be back on the freeway before the traffic got bad. Good plan….but there was a wreck on the freeway and we were at a complete stop for a long time. We ended up reaching the hospital with just a few minutes to spare before our appt. David wanted me to drop him off at the elevator lobby in the parking lot because he felt too weak to walk very far. I had a bad feeling because David is not trustworthy…he could totally wander off or go to the bathroom or go on to the appt without me. But I did it anyway, and I told him to STAY THERE….in the glassed-in area of the parking lot in front of the elevators. I parked and ran to meet him, and as I ran up, I saw that he had his pants open and unzipped. I ran up to him and said, "No, David!!!! No, you cannot pee right here!" (We both had to go really bad because we had large Starbucks drinks on the ride and we were stuck in traffic for so long.) David said, "Too late." I looked around surreptitiously and didn't see a mark on the concrete anywhere. I said, "Where did you go?" He said, "Right here," and he handed me his full Starbucks cup. In retrospect, it's slightly funny, but at the time, I was horrified that he peed out in public in front of masses of people getting off and on the elevators. I took the cup and was like, what am I going to do with this? I saw a huge dumpster and I just chucked it in there. I felt bad but I didn't know what else to do with it. We were a long way from any bathrooms.

So we went on to the appt and it was bad. Bad for me, maybe not that bad for David. I can't tell how things are affecting him. He does not show any emotion whatsoever….maybe that's a blessing in disguise. The dr asked David what he would like to do. David said, "I'd really like to play basketball again. I dream about it every night." I covered my eyes with my hand and I tried so hard to keep my emotions suppressed, in check…I tried so hard that I thought I was going to have a heart attack. I got all sweaty and I heard a roaring in my ears and I got lightheaded….and then I started crying without moving or making any noise. I had hot molten tears running out in a steady pour with no break in them. I said really quietly to the dr, "I'm dying inside." I think I felt worse than I might feel if David just died outright. Idk maybe I am just fooling myself. I just know that the emotional pain was almost more than I could bear. The doctor and his student dr that was observing just said some trite stuff that didn't help, and David looked at me and put his hand on my shoulder. I don't know if he knew why I was crying. Anyway, the visit didn't help--it only stirred up pain for me--but the dr did give me a huge prescription for pain meds for David. He also told David that he needed to get out and do stuff that he enjoyed. He needed to play and to laugh. Good luck with that.

So we got lunch and took it back to David's apartment which I didn't want to do. I don't want to go to David's apartment and then have to make him leave. We ate and he asked if he could lay down until the traffic got better. I said sure. When it was time to wake him up to leave, I had this thought…I wondered when he woke up, if he would feel like it was all a bad dream, and everything was all right and he was home in his apartment that he loves and healthy and everything would be okay. I got so upset and I could not quit crying. It's like once I get started, I can't get a grip. So I woke David up and I was standing outside his bedroom trying to hide the fact that I'd been crying, and I heard a thump and I ran in there, and he was on the floor having a tonic clonic (grand mal) seizure. I just started crying really hard and I was so shook up that when I called 911 I couldn't remember his address or anything. So the paramedics came and transported him to OHSU's ER, they did a CT and it didn't show any medical emergency that needed immediate treatment, so we ended up going back to Salem around 3 am. We were in the ER for about 7 hours. I was so drained by the time we got home that it was hard for me to walk, much less help David into the house and into bed.

The CT showed a slight reduction in the overall mass effect. I guess that's good because they didn't even expect to see any changes for two months. But I am not all that excited because David is so sick and impaired.

The next day, David called a friend and they went to watch a bb game. It was with the league that David played in (and dominated) back in the day. David didn't realize that the game was about to start, and he went out on the court to make a few shots like everyone does before a game. The gym got really quiet because everyone knows David and what he is going through. He took two steps towards the basket and he fell down on his stomach. His legs are so weak---they just gave out on him. A bunch of people ran out and helped him up and they passed the ball to him while he stood under the hoop. He couldn't even throw the ball high enough to brush the net. I wasn't there but I heard all about it from several different people. I don't think David realized that he was that bad. The whole thing made me cry super hard again for a long time.

So a few days later, I took David back to that gym (I have keys) and the two of us stood under the basket and I rebounded for him and he took about 50 shots. He finally made two of them. I jumped up and down and screamed and yelled and he smiled. That was on Tuesday and he is still worn out from it. He hasn't felt like going back yet. He gets Avastin on Tuesday if his counts are okay, so we may not make it back to that gym for a while.

He has started with another issue. He is having a lot of trouble swallowing his pills. I have to put each one of them in pudding and even with that, it's a battle. He can eat food normally….it's just when he has to concentrate on swallowing pills. He takes 8 pills in the am and 6 at night, and pain pills in between. Idk why he's having this trouble. Is the tumor encroaching on the part of his brain that controls swallowing? He had this problem before when he had brain swelling from the BBBD.

He is also wetting and having bms in his pants. At first it was in his sleep (wetting) but now he did it when he was up and eating at the dinner table. He also feels a bm coming but can't get to the toilet in time. I tell him no big deal, it will only take me 5 to 15 minutes to clean up and it will be like it never happened. I have a good system to clean up but it takes a lot out of me and I don't have enough clean sheets etc to handle multiple accidents. I'm worn out. He doesn't do this all the time, though. But lately it's been more often…..

He falls a lot and he is covered in bruises. He has bruises on the inside of his elbows, the top of his forearms, his wrists and the back of his hands from IV's. Also a wicked one on his chest from where they accessed his port for chemo two weeks ago. The paramedics had trouble getting one started and they tried a bunch of different spots. He has bruises on his chin, shins, knees, elbows and hip from falls. He has a mass of bloody purple bruises on his stomach from the 2x a day enoxaparin shots. He has horrible stretch marks like I've never seen, on his hips and behind his armpits. The ones on his hips look like they are bleeding under the skin, and the one behind his armpit is so deep, like a little canyon. I can barely look at them--they look so bad. It's because of the weight gain from the steroids. He takes 12 mg a day. His face is so puffy that some family members didn't recognize him on Easter. He has a huge pot belly like a basketball and he stands funny, with his stomach kind of thrust out. He is unrecognizable from how he used to be…so slim and lean and ripped. Smiling and joking and loving and happy…..

He is so weak that he can barely walk from the bedroom to the kitchen for meals. I try to make him do it because I know that the more time he spends in bed, the weaker he will be. But it's hard for me to force him to get up and do stuff when he does NOT want to. It's not because he's depressed…it's because he feels so sick and miserable and weak. But he is depressed too.

I asked him if he was annoyed with me and he didn't answer. I said that I wouldn't be mad or hurt, I just wanted to know so I could stop doing whatever was annoying him. I talk so gently to him….I am amazed at how patient I am. I was always such an impatient person….but I'm never impatient with David. I was giving him his shot when I asked him if he was annoyed with me, and he said, "Well, this doesn't help." I said, 'I know, David, and I hate it. But I have to do it." He said, "It's not anything you are doing. I just want to go home." I had to leave his room so he wouldn't see me melt down. He is never ever going to go home.

Now my husband is pressuring me to agree to give up David's apartment. They just raised his rent again. He hasn't stayed there since December. I am not rational about it and I refuse to consider it. I don't give a XXXX about the money. I could light a match to it and be happy about it. I just cannot take that hope and dream away from David. My husband backed off. I think he's nervous that I am cracking up. I finally told my husband that I would carefully bring it up and ASK David if' he'd like to give up his apartment for a time and get it back later, and if David was okay with that, then okay. But I WILL NOT put any pressure on David. I may be a fool and a jerk and I know from a money point of view, it's stupid (we are really broke these days) but I don't care. I just can't go there right now….the thought of moving his stuff out and leaving there for the last time makes me cry….everything makes me cry, I guess.

David has a wicked cough right now, and a runny nose. The seizure dr told us that an infection could very easily trigger a seizure. So I am on even bigger pins and needles, running down the hall every time I hear any thumps or bumps. I am driving myself crazy doing it. I'm also concerned that he won't be able to get treated on Tuesday.

Well, now that I have shared what a nutcase I am, I am going to say that I am okay, and I will survive this. I had a little epiphany….it's possible to believe in God, to trust God fully, to believe in eternity, to believe that David will be in Heaven if/when he dies, to believe that I will see him again one day, to believe that it's going to be okay even if/when David dies…it's possible to believe all these things and still cry a lot and be absolutely sick with grief. I mean, how can anyone see their son wither away in front of their eyes and not be heartbroken and cry a lot? I know that God understands and feels my pain and that He grieves for me and for David too.

Please don't think I'm a hypocrite…..but I read this incredible Scripture the other day. It's talking about the coming birth of Christ…"Because of God's tender mercy, the morning light from Heaven is about to break upon us, to give light to those who sit in darkness and in the shadow of death, and to guide us to the path of peace. (Luke 1:78-79 NLT) I was shocked by how much this Scripture speaks to me. I feel like I am sitting in the shadow of death, and I want to be on a path of peace. I think this is a beautiful Scripture and it brings peace to me. I need to read it every 30 minutes, I guess.

Thank you again for your concern and support. I know that you can all relate to what I'm going through and that you all are going through the same anguish, grief and heartbreak as I am. I feel like you guys are handling it better than I am, but maybe that's because I share every emotion and thought that passes through my mind, and most of you have more restraint.

Love, blessings, strength and peace to all of you (and me too),
Cindy