big dip in our roller coaster of a life

cindysuetoyou said:

test results, treatment.....
Thank you, connsteele, tmfaubus, Michelle, 4theloveofmysis and Leslie. I appreciate your posts and concern and prayers.

The oncology team came in this am and told us what I feared they would say....there is "significant progression" and the mass effect is now too great to risk another BBBD or even an intra-arterial chemo treatment. We are waiting to be cleared by infectious disease and neurology (for the seizures) for an IV chemo treatment. I asked Dr. N if David could have a BBBD or even an IA next month month and he hesitated and said, "Let's see how he does." I'm scared.

Dr. N also is going to start David on Avastin.

The neurology team said that they see behaviors like David's...they call them "neurological deficits" and the neurology team said it's from the tumors. David is getting "stuck" again and it's like he's fixated on things....like the bidet flush in his room's toilet. He will flush it over and over and over until I gently talk him out of leaving the bathroom. He turns the lights on and off and I don't know if he'd stop on his own. I have to distract him or gently take his hand and lead him out. He does a lot of things like that. It's absolutely heartbreaking. He is totally aware and he realizes that he's "off." He's still pretty dang sharp as far as understanding stuff and having mental acuity.

He was way worse after the last BBBD and he recovered from that. But I think that his problems back then were from swelling, and now they are from tumors. I asked Dr. N if he thought that (wimpy) IV chemo would even help David and he said "absolutely yes." He seemed very sure it would help. So my hope and my prayers and my longing is that the IV chemo will shrink things down enough that David will be able to tolerate another BBBD.

While I was writing this, my favorite dr from oncology came by. I went out in the hall and talked to him. He said that the MRI did not look good at all. I asked again if David could do a BBBD treatment in a month or two and he hesitated and said, "maybe." I don't think he thinks that David is going to be able to do another one. He said it's like a chess game. We didn't think we were going to win the game---we knew from the beginning that we were going to lose. We need to plan each individual move and work towards being in a stable place, but not play the game like we were going to win it. I said that it was probably a good analogy but I don't play chess. I don't mean anything by that...I just don't play chess. But....I don't want to think about playing the chess game of life for David without a "win" mentality. But what I want and what is going to happen are most likely not going to be the same thing.

David is depressed and really sad about all of this. It's hit him hard, and he didn't even hear my talk with the dr in the hall either. The expression in David's eyes....they are so sad and filled with regret and pain, and he looks deep in my eyes, like he is reading my mind, and I feel like I am dying inside. My heart and chest and stomach feel compressed, like someone is squeezing them. It's an actual physical pain. I am putting on a brave face and acting like I expect the IV chemo to help but I don't think David is buying it. I am trying to believe that it will help but it's hard to hold on to hope.

We are scheduled to have the IV chemo tomorrow and then go home. Then come back as an outpatient on Friday for the Avastin. We have to do Avastin outpatient because of insurance requirements. I hope we don't have some snag and delay in doing the chemo on the insurance end of things. I HATE our insurance company.

I'm still praying for a miracle and for David to beat this, or at least win this round. I won't quit hoping and praying until either he or I draw our last breath. And even though all of this is so bad and I don't want to do this, I don't want to be here, I don't want to know how bad David's situation is....I still trust God, no matter what the outcome is. I believe that there is more than just this life. Good thing, because right now this life sucks.

Not so positive these days, am I? I will pray and read the Bible and think on some positive things and I'll regain some hope and do better. Forgive me for venting like this. I can't say these things anywhere else. My whole family and especially David are counting on me to set a hopeful, fighting tone. If I don't, the time that we have left with David will be a terrible hard time, instead of a time where we can savor the sweetness of every moment we have with David. It's a huge responsibility. I hope I'm up to it. I have to be.

Love and blessings and peace to you all...and to me too.
Cindy---back in Portland, OR

cindysuetoyou said:

test results, treatment.....
Thank you, connsteele, tmfaubus, Michelle, 4theloveofmysis and Leslie. I appreciate your posts and concern and prayers.

The oncology team came in this am and told us what I feared they would say....there is "significant progression" and the mass effect is now too great to risk another BBBD or even an intra-arterial chemo treatment. We are waiting to be cleared by infectious disease and neurology (for the seizures) for an IV chemo treatment. I asked Dr. N if David could have a BBBD or even an IA next month month and he hesitated and said, "Let's see how he does." I'm scared.

Dr. N also is going to start David on Avastin.

The neurology team said that they see behaviors like David's...they call them "neurological deficits" and the neurology team said it's from the tumors. David is getting "stuck" again and it's like he's fixated on things....like the bidet flush in his room's toilet. He will flush it over and over and over until I gently talk him out of leaving the bathroom. He turns the lights on and off and I don't know if he'd stop on his own. I have to distract him or gently take his hand and lead him out. He does a lot of things like that. It's absolutely heartbreaking. He is totally aware and he realizes that he's "off." He's still pretty dang sharp as far as understanding stuff and having mental acuity.

He was way worse after the last BBBD and he recovered from that. But I think that his problems back then were from swelling, and now they are from tumors. I asked Dr. N if he thought that (wimpy) IV chemo would even help David and he said "absolutely yes." He seemed very sure it would help. So my hope and my prayers and my longing is that the IV chemo will shrink things down enough that David will be able to tolerate another BBBD.

While I was writing this, my favorite dr from oncology came by. I went out in the hall and talked to him. He said that the MRI did not look good at all. I asked again if David could do a BBBD treatment in a month or two and he hesitated and said, "maybe." I don't think he thinks that David is going to be able to do another one. He said it's like a chess game. We didn't think we were going to win the game---we knew from the beginning that we were going to lose. We need to plan each individual move and work towards being in a stable place, but not play the game like we were going to win it. I said that it was probably a good analogy but I don't play chess. I don't mean anything by that...I just don't play chess. But....I don't want to think about playing the chess game of life for David without a "win" mentality. But what I want and what is going to happen are most likely not going to be the same thing.

David is depressed and really sad about all of this. It's hit him hard, and he didn't even hear my talk with the dr in the hall either. The expression in David's eyes....they are so sad and filled with regret and pain, and he looks deep in my eyes, like he is reading my mind, and I feel like I am dying inside. My heart and chest and stomach feel compressed, like someone is squeezing them. It's an actual physical pain. I am putting on a brave face and acting like I expect the IV chemo to help but I don't think David is buying it. I am trying to believe that it will help but it's hard to hold on to hope.

We are scheduled to have the IV chemo tomorrow and then go home. Then come back as an outpatient on Friday for the Avastin. We have to do Avastin outpatient because of insurance requirements. I hope we don't have some snag and delay in doing the chemo on the insurance end of things. I HATE our insurance company.

I'm still praying for a miracle and for David to beat this, or at least win this round. I won't quit hoping and praying until either he or I draw our last breath. And even though all of this is so bad and I don't want to do this, I don't want to be here, I don't want to know how bad David's situation is....I still trust God, no matter what the outcome is. I believe that there is more than just this life. Good thing, because right now this life sucks.

Not so positive these days, am I? I will pray and read the Bible and think on some positive things and I'll regain some hope and do better. Forgive me for venting like this. I can't say these things anywhere else. My whole family and especially David are counting on me to set a hopeful, fighting tone. If I don't, the time that we have left with David will be a terrible hard time, instead of a time where we can savor the sweetness of every moment we have with David. It's a huge responsibility. I hope I'm up to it. I have to be.

Love and blessings and peace to you all...and to me too.
Cindy---back in Portland, OR

cindysuetoyou said:

test results, treatment.....
Thank you, connsteele, tmfaubus, Michelle, 4theloveofmysis and Leslie. I appreciate your posts and concern and prayers.

The oncology team came in this am and told us what I feared they would say....there is "significant progression" and the mass effect is now too great to risk another BBBD or even an intra-arterial chemo treatment. We are waiting to be cleared by infectious disease and neurology (for the seizures) for an IV chemo treatment. I asked Dr. N if David could have a BBBD or even an IA next month month and he hesitated and said, "Let's see how he does." I'm scared.

Dr. N also is going to start David on Avastin.

The neurology team said that they see behaviors like David's...they call them "neurological deficits" and the neurology team said it's from the tumors. David is getting "stuck" again and it's like he's fixated on things....like the bidet flush in his room's toilet. He will flush it over and over and over until I gently talk him out of leaving the bathroom. He turns the lights on and off and I don't know if he'd stop on his own. I have to distract him or gently take his hand and lead him out. He does a lot of things like that. It's absolutely heartbreaking. He is totally aware and he realizes that he's "off." He's still pretty dang sharp as far as understanding stuff and having mental acuity.

He was way worse after the last BBBD and he recovered from that. But I think that his problems back then were from swelling, and now they are from tumors. I asked Dr. N if he thought that (wimpy) IV chemo would even help David and he said "absolutely yes." He seemed very sure it would help. So my hope and my prayers and my longing is that the IV chemo will shrink things down enough that David will be able to tolerate another BBBD.

While I was writing this, my favorite dr from oncology came by. I went out in the hall and talked to him. He said that the MRI did not look good at all. I asked again if David could do a BBBD treatment in a month or two and he hesitated and said, "maybe." I don't think he thinks that David is going to be able to do another one. He said it's like a chess game. We didn't think we were going to win the game---we knew from the beginning that we were going to lose. We need to plan each individual move and work towards being in a stable place, but not play the game like we were going to win it. I said that it was probably a good analogy but I don't play chess. I don't mean anything by that...I just don't play chess. But....I don't want to think about playing the chess game of life for David without a "win" mentality. But what I want and what is going to happen are most likely not going to be the same thing.

David is depressed and really sad about all of this. It's hit him hard, and he didn't even hear my talk with the dr in the hall either. The expression in David's eyes....they are so sad and filled with regret and pain, and he looks deep in my eyes, like he is reading my mind, and I feel like I am dying inside. My heart and chest and stomach feel compressed, like someone is squeezing them. It's an actual physical pain. I am putting on a brave face and acting like I expect the IV chemo to help but I don't think David is buying it. I am trying to believe that it will help but it's hard to hold on to hope.

We are scheduled to have the IV chemo tomorrow and then go home. Then come back as an outpatient on Friday for the Avastin. We have to do Avastin outpatient because of insurance requirements. I hope we don't have some snag and delay in doing the chemo on the insurance end of things. I HATE our insurance company.

I'm still praying for a miracle and for David to beat this, or at least win this round. I won't quit hoping and praying until either he or I draw our last breath. And even though all of this is so bad and I don't want to do this, I don't want to be here, I don't want to know how bad David's situation is....I still trust God, no matter what the outcome is. I believe that there is more than just this life. Good thing, because right now this life sucks.

Not so positive these days, am I? I will pray and read the Bible and think on some positive things and I'll regain some hope and do better. Forgive me for venting like this. I can't say these things anywhere else. My whole family and especially David are counting on me to set a hopeful, fighting tone. If I don't, the time that we have left with David will be a terrible hard time, instead of a time where we can savor the sweetness of every moment we have with David. It's a huge responsibility. I hope I'm up to it. I have to be.

Love and blessings and peace to you all...and to me too.
Cindy---back in Portland, OR

cindysuetoyou said:

test results, treatment.....
Thank you, connsteele, tmfaubus, Michelle, 4theloveofmysis and Leslie. I appreciate your posts and concern and prayers.

The oncology team came in this am and told us what I feared they would say....there is "significant progression" and the mass effect is now too great to risk another BBBD or even an intra-arterial chemo treatment. We are waiting to be cleared by infectious disease and neurology (for the seizures) for an IV chemo treatment. I asked Dr. N if David could have a BBBD or even an IA next month month and he hesitated and said, "Let's see how he does." I'm scared.

Dr. N also is going to start David on Avastin.

The neurology team said that they see behaviors like David's...they call them "neurological deficits" and the neurology team said it's from the tumors. David is getting "stuck" again and it's like he's fixated on things....like the bidet flush in his room's toilet. He will flush it over and over and over until I gently talk him out of leaving the bathroom. He turns the lights on and off and I don't know if he'd stop on his own. I have to distract him or gently take his hand and lead him out. He does a lot of things like that. It's absolutely heartbreaking. He is totally aware and he realizes that he's "off." He's still pretty dang sharp as far as understanding stuff and having mental acuity.

He was way worse after the last BBBD and he recovered from that. But I think that his problems back then were from swelling, and now they are from tumors. I asked Dr. N if he thought that (wimpy) IV chemo would even help David and he said "absolutely yes." He seemed very sure it would help. So my hope and my prayers and my longing is that the IV chemo will shrink things down enough that David will be able to tolerate another BBBD.

While I was writing this, my favorite dr from oncology came by. I went out in the hall and talked to him. He said that the MRI did not look good at all. I asked again if David could do a BBBD treatment in a month or two and he hesitated and said, "maybe." I don't think he thinks that David is going to be able to do another one. He said it's like a chess game. We didn't think we were going to win the game---we knew from the beginning that we were going to lose. We need to plan each individual move and work towards being in a stable place, but not play the game like we were going to win it. I said that it was probably a good analogy but I don't play chess. I don't mean anything by that...I just don't play chess. But....I don't want to think about playing the chess game of life for David without a "win" mentality. But what I want and what is going to happen are most likely not going to be the same thing.

David is depressed and really sad about all of this. It's hit him hard, and he didn't even hear my talk with the dr in the hall either. The expression in David's eyes....they are so sad and filled with regret and pain, and he looks deep in my eyes, like he is reading my mind, and I feel like I am dying inside. My heart and chest and stomach feel compressed, like someone is squeezing them. It's an actual physical pain. I am putting on a brave face and acting like I expect the IV chemo to help but I don't think David is buying it. I am trying to believe that it will help but it's hard to hold on to hope.

We are scheduled to have the IV chemo tomorrow and then go home. Then come back as an outpatient on Friday for the Avastin. We have to do Avastin outpatient because of insurance requirements. I hope we don't have some snag and delay in doing the chemo on the insurance end of things. I HATE our insurance company.

I'm still praying for a miracle and for David to beat this, or at least win this round. I won't quit hoping and praying until either he or I draw our last breath. And even though all of this is so bad and I don't want to do this, I don't want to be here, I don't want to know how bad David's situation is....I still trust God, no matter what the outcome is. I believe that there is more than just this life. Good thing, because right now this life sucks.

Not so positive these days, am I? I will pray and read the Bible and think on some positive things and I'll regain some hope and do better. Forgive me for venting like this. I can't say these things anywhere else. My whole family and especially David are counting on me to set a hopeful, fighting tone. If I don't, the time that we have left with David will be a terrible hard time, instead of a time where we can savor the sweetness of every moment we have with David. It's a huge responsibility. I hope I'm up to it. I have to be.

Love and blessings and peace to you all...and to me too.
Cindy---back in Portland, OR

falcon69 said:

thinking of you
Dear Cindy,
I have been reading your posts ever since I became a member of this site but have never replied. I feel moved to reply to your last post as I cried when I read it. My heart goes out to you and prayers are going up for you. You are being such a great, strong mom for David as he has traveled this horribly tough road. We love our sons (and daughters) so much and want so much for them. It is so difficult to see them suffer. I totally understand your description of how you feel. Please know that Julie, in St. Louis, is praying for you and David and that God has you in His hands and turn your burden over to Him.

May God's peace be with you and comfort you.

Julie
mom of Scott, 31 years old
dx grade 2 oligodendroglioma/Dec. 2011
over 80% resected Dec.23,2011/no neurological deficits
monitoring w/MRI's every 3 months

cindysuetoyou said:

update
We are busy, busy, busy here in the hospital with PT, etc but I wanted to post an update. I am cheating and copying and pasting my update from my FB page because I don't have much time.

I am so touched by all of your guys' comments. You are all so kind to me and you are all so amazingly unselfish to take the time to care about me and pray for me and David and to write to me, even in the midst of all the things you all are facing. I feel incredibly connected to all of you. I laid in bed late Wed. night, crying and praying for you. I named each one of you and your loved ones....I'm glad I prayed but it was overwhelming to think about how much each and every one of us is facing. I feel so weak...thanking God that He is strong enough for me.

I hope I can come back on here in the next few days and respond personally. Idk if I can because I am going to have my hands full with David's care. But I sure will try.

Here's my FB post. You know me....it's a mammoth one..

CINDY>>FACEBOOK>>
Yay I get to post some positive news. David is improving! It's up and down, but right now, the ups are longer and the downs are shorter. Yesterday and the day before, I was so concerned because he had some "behaviors" going on. Repetitive, purposeless stuff....I won't go into detail but I'm sure you can understand how that makes me feel. (This was before the chemo treatment yesterday.) The different doctor teams (the neurology team for seizures, the oncology team) said that the area in the brain that is being impacted controls the ability to formulate and carry out tasks, controls critical thinking, and emotions. All those areas were obviously being affected yesterday morning and the day before....maybe days before, since we were starting to get concerned before we even came to the hospital. They were pretty bad and very disturbing. I prayed and cried off and on for hours in the dark with my pillow and blanket over my head on Wednesday night/Thursday morning.

So David did the chemo yesterday afternoon, and they sedated him a lot. But after the sedation wore off, he wasn't talking and he was not very responsive. I thought he might be better this am, but he wasn't talking. I'd ask him simple questions and he would just look at me. Sometimes he wouldn't even look at me unless I took his face in my hands and turned his face towards me. And he still couldn't answer. Dr. N and his team came by early this am and said that maybe he should stay another day, just to be safe. But as the morning progressed and PT came by and worked with David, and he had breakfast, etc., he's really improved. I told David that it was important that he used his voice and talked out loud, not to just nod or shake his head. He said, "Okay." I asked if it was hard for him to talk and he said, "Yes." He is hoarse (I don't know why) and you can tell it takes a lot of effort to talk. But as today has progressed, he's gotten better and better. He's talking more often too.I have to initiate most of the conversation and it's just one sentence here, one sentence there, but that's okay! And the best part....he's even smiled at a few of my funnies! I can't tell you how happy it makes me to see him smile! It's like a warm glow in my heart that spreads out to my stomach and chest. And he's barely doing any of the repetitive behaviors. I told one of the oncology team members who came by later this morning about David's improvements and asked if it was from the steroids (but he's been on a higher dose since we were at Salem ER) and she said possibly, but it's much more likely that it's from the chemo. I asked if it could work that fast and she said yes. So I think that's a great sign!!!!

I should add that even though David does/was doing repetitive stuff, when he talks, he has total clarity and understanding. For example, the PT gal said to him, "What do you think about all the drama with the Blazers?" He replied, "Well, I think you stated it correctly---it's drama." And I said to him, "Thank you for letting me use your headphones. They are the most incredible, amazing ones I've ever had on my head." And he said, "Yeah---and you had them on backwards, by the way." And he smiled at me. He's sharp and has great mental clarity. I love him so much!!!! (It's true--I did have them on backward lol!)

Neurology came by and they said that they think they have the seizures under control...for now. But they said that David could seize at any time. They are totally unpredictable. Isn't that a lousy thing to have to think about? I hate it! And they said that with what is going on with David, he is highly likely to continue to have seizures, but we should not panic. Well, I don't panic, but I HATE them and I don't think I will ever get over the fear and dread and loathing and dismay and grief I feel when David has even a small one. I'm SO FRUSTRATED that I can't do anything or make the doctors do anything to make them stop. Just stop!!!! Am I just supposed to come to a place where "I accept what I cannot change"? I am not doing well with it at all in regards to seizures.

If we hadn't gone through that nightmare time with the 2nd BBBD in December, I'd be really crazy with worry right now. But David recovered from that treatment and those horrible aftereffects, so I totally believe that he can recover again. And he is NOWHERE NEAR as bad this time as he was that other time. (Forgive my lousy grammar!)

So it looks like we are on track to come home today, sometime later this afternoon or evening. David has another substantial recovery period ahead of him---he can't get up or walk unaided and he will need someone with him 24/7---but we can work that out. I think once he gets home, he will improve more rapidly. David's attitude is so wonderful...he's not cranky or mean or anything even remotely like that, even with the high steroid dose. And he is working so hard to do everything he can to recover. You can easily see how hard it is for him to talk. And it takes so much effort to get out of bed and stand....he shakes so hard that I can feel it through the bed when I lean my hand on it. Everything he does...walking to the bathroom, pulling paper towels out, washing his hands, lifting a fork to his mouth....it's all super hard work for him. I cannot imagine what it's like for him. He is really, truly my hero. When we get home, I am going to pour myself even more into doing anything we can to help him get better.

Thank you again for following David's ever-evolving situation and for reading my mammoth posts. Once again, I want to thank you all so much for your prayers and support and FB notes. It means so much to all of us. I read them to David too. Please keep praying because we have a huge battle ahead of us. We really need for this chemo to knock the tumors back--we need to gain a lot of lost ground.

Love and blessings,
Cindy

Thank you, too, my CSN friends. I love and appreciate you all very, very much. You guys understand like no one else....I am so grateful...

Love and blessings,
Cindy

cindysuetoyou said:

thank you
Thank you, girl2010. I think of you and your brother often. He had so much going against him with his rare genetic condition that made treatments not effective...and I remember your writing that the drs were still going to treat him because he was upset that they were not going to give him anything more.....your brother and my son---such fighters. If this battle could be won by sheer willpower and a positive fighting attitude....then they both would be cancer free. But it's not enough...

My heart is so heavy. So many people hurting and suffering...so many of them so young, with their whole lives ahead of them....I cry a lot these days.

Thank you for your thoughts and prayers. I hope that you and your family are able to heal and go forward in life.

Love and blessings,
Cindy