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David and Avastin and Carboplatin and life in general....

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hello...

I'm finally posting about David's response to his treatment and what the nurse said that hit me so hard.

First off, I see an improvement in David. Not a huge one, but he is acting better. He is not doing the weird behaviors that make me so upset. He's not nearly as shaky and weak, though I won't leave him alone or anything like that. He is able to shower and use the bathroom and walk around in the house without help, and that's great and a morale booster. He still is getting stuck every now and then, but not as bad. I had to give him a steroid at 5 am, and after we turned the lights out and got settled back in, I saw with the baby monitor (I'm not sleeping with him any more) that he was getting up and going to the bathroom. I waited for him to come back to bed. I saw him put his hands on the bed and lean over with his weight on his hands, and then he put one knee on the bed, and just leaned over like that, with one foot still on the ground. And he stayed in that position, kind of crouched over the bed. I waited and waited...I prayed that he could finish the task and get in bed. Waited some more. Then I could see that he was weakening and starting to shake. So I went in his room and said gently, "What are you doing, David?" He said, "Getting in bed." I asked him if he was stuck..he said no. I said, "Do you want me to help you?" "Okay." After I helped him into bed and got him all comfortable and covered up with the blankets, he said, "Thank you, Mom. I guess I was stuck." It makes me so sad. And what if I hadn't heard him get back up? I'm so glad that I bought that baby monitor. It's worth every penny.

So the day after David started Avastin, our NO's big dog nurse called me. We talked and I asked her what to expect from the Avastin. She said that they hoped it would help David be more "in touch" with things. Then I asked if I it was reasonable to hope that Avastin and the chemo he is also doing (carboplatin) would shrink the tumors down and reduce the mass effect enough that David could have another BBBD treatment a few months out, or was that unrealistic of me? She said it was unrealistic..."that is not realistic, Cindy." I wish I could send a video of my imitation of how she says it...so full of gloom and doom and absolutely no hope in her tone of voice. Makes me crazy! It impacts me so much and I hate that I allow her comments to devastate me. I tell myself that Dr. Neuwelt is the real authority and expert and he said that he thought this treatment protocol would help David (though he hesitated and said, "let's wait and see how he does" when I asked if David could do a BBBD in a few months).

Then that nurse started talking about reducing David's pain meds. They are nazis about the pain meds. It angers me so much. Do they think that David enjoys being drugged? Do they think he is faking having headaches? Next time I talk to them, I'm going to get nasty mean and ugly and ask them if they think we are selling it on the streets or if they think David is going to become an addict. I did say to her that he's been doing good on the level of pain meds that they have him at, and why would we mess with it now? Are they thinking it would help with the side effects like getting stuck, etc.? And she said actually at this point, it probably doesn't matter if he still takes a lot of narcotics. Well, thanks a lot. That really helps me out. I feel really ugly about the issue with pain medicine. They cut him back but I can give him more if he is in a lot of pain. He takes several different things for pain but I won't list them all here....and I am okay with cutting back on the extended release morphine and the steroids, but i want to be able to give him Dilaudid as needed. He's been taking it for over a year now, as needed.

Well, I haven't gotten over that phone call yet. I spent the rest of that day being brave and cheerful in front of David in his room, then going in the kitchen or bathroom and crying my eyes out. I called my sister and my daughter and cried with them. I hate having any tendrils of hope shredded like that.

My sister had written down a Scripture for me. It goes like this: "The Lord hears His people when they call out to Him for help. He rescues them from all their troubles. The Lord is close to the brokenhearted. He rescues those whose spirits are crushed." (Psalms 34:17-18) I thought that describes me perfectly. Brokenhearted with a crushed spirit. I've been praying a lot and thinking about different Scriptures, and it helps. But it doesn't take much for me to be weeping again. I don't take any of the Scriptures to be some promise that David won't die. What they mean to me is that God will help me to survive (mentally and physically and emotionally) whatever is in our future. I have shifted from taking it one day at a time to taking the morning by itself, then the afternoon, then the evening. David could seem bad in the am but be improved by the evening, and vice versa. It's almost a moment by moment battle.

David is feeling well enough and seizure free enough to feel like he can go back to sleeping alone. I miss our evenings together but I am so glad that he feels that much better. So every night I go in his room around 11 pm with a cup of tea, and we watch "The Office" or something on Netflix, on his big HD TV. Last night we were lying there watching TV, and out of nowhere, David says, "Mom......am I dying?" It shocked me and took me totally off guard. The look on his face......... I said, "Why do you ask me that, David?" He said that everyone is being so nice to him, coming over and visiting him, telling him that they love him....I said, "Well, we are all scared, David. We don't like the direction things have been going." He started to weep. I held him in my arms and cried too. Then I said, "David, you have been pretty sick before, with the BBBD and with the cellulitis/blood clots/infections and we were all really scared then. But you battled back then, and you can battle back now. It just hasn't been going the direction we like recently. We are all so nice to you because we can see how sick and shaky and weak you are, and we feel bad and we all love you so much." He nodded. And I said, "David, don't you dare give up and don't you dare quit fighting. You are a long ways from dying." And he said okay. And we finished watching "The Office."

But I went to bed after that in my own room and I cried off and on for most of the night. I called my poor daughter and told her about my conversation with David. The pain I feel is so intense....but I told myself that when I get up in the am, I would need to find the perfect blend of truth and hope to say to David. I won't pretend to him that I am sure that everything is going to be okay and he's going to be fine, but I am going to hang on to hope and say that we just do not know...and neither do the doctors. Now is not the time to give up hope and to quit trusting in God.

But man, you guys. I feel pummeled.

Love and blessings,
Cindy

PS Our NO will wait at least two months before he does an MRI (if we don't have any problems) to allow the Avastin and carboplatin time to make a discernible difference. At least that's what the girl from the NO's office said today when she called to tell me that David's labs from Monday all looked good. It's going to be a hard, scary two months.....I dread that MRI so much.

cdolive4
Posts: 34
Joined: Sep 2011

Cindy, I'm so glad to receive an update on David. I've been checking as often as I can, and I'm glad that things have settled down a little bit so that you can stay in touch. Your posts are a blessing to us all - even the difficult ones. Thank you for sharing with us - there really is strength in numbers.
When I reread my last post, I realized it came across as kind of overly emphatic about you not being alone, but I just feel so strongly about that - that we are not left alone in our times of need. That keeps me going every day, and I know that your faith strengthens you as well. I just didn't mean to sound quite as militant as I did. ;-)
My Dave is doing pretty well overall. They did the biopsy and virus injection for the clinical trial on Valentine's Day, and we spent a month in Houston while they monitored him closely. He has not had any ill effects from the surgery, thank goodness, although he has had some struggles with focal seizures and slurred speech. Those seem to be improving, though. We go back in a couple of weeks for his next MRI. His recent MRIs have shown some minor changes, and we are waiting to see if the virus takes hold or if they decide if they can do another surgery to go in and take the recurrent tumor out - it's near his motor strip and his language center, so we will weigh that decision carefully.
We do have some good news, though - our son who just got married in October and his wife will be having our first grandchild in September, and that's very exciting news. Sometimes it's good to just have something uncomplicated and happy to think about.
You and your family are in my prayers, and I'm rooting for the Avastin to do a wonderful job and help David continue to improve daily. As fellow passengers on the brain tumor roller coaster, we love you and hope for the very best for you in all things. CindyO

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Cindy.

Thank you for all of your kind words. I didn't think you sounded "militant" at all. :) And I really appreciate the support...it does make me feel like I am not alone. It helps me so much to know that you and others on this site know exactly how I am feeling....

I'm so glad that your husband gets to be a part of that clinical...it's at MD Anderson, right? I think that the vaccine trials look promising. It's wonderful that he is not having any serious side effects from it either. I hate to hear that he is having seizures....but I'm glad that they are improving.

David hasn't had any more seizures, but he gave me a scare the other night. He thought he felt one coming on, and I barely got him in bed and had him take a Lorazepam. He never seized but he had an instant headache come on, a bad one. It was late at night, and I called OHSU. They had to get our main NO out of bed and by the time I talked to him, David was better. His headache had gotten better too. Our NO sounded worse than David. He and his team had just finished hosting a huge national yearly convention and I think he was really wiped out from that. I felt bad that we dragged him up out of bed but he was very gracious about it. He said that since David's headache was lessening and he was feeling better, that David was going in the right direction and we didn't need to take him to ER. Christy came over (she lives next door) and she climbed in bed with David and just talked with him and with me for a while. Just like a little party. No joke. David felt so much better that he ate a piece of pie and ice cream. I think he was super-relieved that he hadn't seized and he didn't have to go to the ER. It's amazing how he can seem on the verge of a seizure and a huge problem, then just a few minutes, he can be so much improved. I don't understand it...but I am always SO GRATEFUL when he does better. It's just a very hard way to live.

David is very up and down. One day he seems so sick and weak that I am terrified, and then the next day, he is much better. He's having a good day today. We watched The Office last night and laughed together. I absolutely treasure those moments. Tonight his brother is coming over with his two kids and we will all have dinner together. I'm looking forward to it. We were going to even try to take a little walk around our cul de sac today but it started to pour rain so we had to cancel.

We went for a little drive last week. We went to see my friend's baby goats. On the way there, we drove past a neighborhood church and there were four guys shooting hoops in the parking lot. I saw David's head turn and he was watching them. I wondered what he was thinking. Basketball was always David's game. He played college basketball and loved it. He never said a word but my heart hurt so bad. I felt like I was having an actual heart attack--it physically hurts me. I just can't go there in my mind and let myself imagine how that must make David feel---to be 28 years old and to believe that he will never ever shoot a basketball again. Sometimes I am shocked all over again, like when I first heard the diagnosis, by the fact that my son has brain cancer.

Last week we all went out for lunch on Wed, and then on Friday we went out for sushi. There were about 7 of us each time. It really wore David out but I think it was really good for him. It's hard to know how much to push him, and how much he really needs to just lay around and rest and recover. The PT gals told me to push him and that I would know when he'd had enough, but I don't really feel very comfortable with making that decision. I prefer to err on letting him have too much rest than doing too much. When he does too much, it seems like we pay for it the next few days.

Anyway, that's what's up with us. We will do another round of Avastin on Tuesday. We will do Avastin on every other Tuesday, and carboplatin every four weeks. He will do Avastin this coming Tuesday (if his counts are up) and his next treatment of carboplatin is scheduled for 4/16. He will do them both as an outpatient, which he is very glad about. He hates staying in the hospital. We can even do it outpatient here in Salem, so no long drive back and forth to Portland. David's NO isn't going to do an MRI for two months. He wants to let the chemo and Avastin have enough time to do enough to show up on an MRI. I've said it before and I'll probably say it a million more times..but I am dreading that MRI....

I'm praying for you and your family too....and congratulations on your upcoming blessing! Your first grandchild! How exciting! :) What a wonderful event to have to look forward to!

Love and blessings,
Cindy

connsteele
Posts: 232
Joined: May 2011

Cindy, so glad to learn that your David has improved. With the disease, small improvements are causes of great celebration.
As for the insensitive "dog" nurse, I understand how seemingly off-hand comments by a health care provider can cut deep. This happened to me, but way back in 1985, when our David was diagnosed with medulloblastoma at the age of 8. We had gone for a follow up appointment with his surgeon, who had removed all of the tumor in the cerebellum. David was doing very well (after the radiation that is) on the chemo of vincristine, CCNU and prednisone. The surgeon, whom we just loved, very empathetic and patient, had completed his exam and said how great David looked, but in the conversation, can't remember the exact context, included the words "David's uncertain future." Well, on the ride home, those words started circling around in my brain and I couldn't get them out of my head. I cried all the way home. My husband thought I was crazy..he was there and he said it didn't really effect him that way ( guys...sometimes!!) Well, about five years later, long after we had stopped seeing the surgeon, we learned that he had suddenly dropped dead with a heart attack at the age of 52. Of course we were sad..he was a wonderful surgeon, very kind, had so much knowledge and skill, and had saved our son's life. But in the end, whose life was the "most uncertain?" Goes to show that no one can tell the future, that life itself is uncertain and we make the best of it we can.
One thing I've learned from this is....as a mom, trust your gut! You know your David better than that nurse does, and if you know, based on your experience, what he really needs re: pain meds, then go for it.
Also, thanks for the scripture references. I'm not real knowledgeable about the Bible but I have the one you mentioned before, Isaiah 41:13, on my refrigerator and think I'll include the Psalms 34:17-18 one too. At times, I too feel like my spirit is crushed.

As for us, we see our David's NO this Thursday along with his third Avastin infusion. I'm thinking Dr. C will give a recommendation, based on David's clincal status, whether to continue the Avastin. Right now we are in Decadron "hell", as he is on 12 mg. Doesn't take naps, wants to stay up to the wee hours while I want to go to bed, and is eating everything in sight, which plays havoc with his diabetes. But he has had no severe headaches, and if this is what it takes to ward them off, then it's worth it.

Love to you and David.

Connie
m/o of David, age 35
dx AA3, April 2011, has progressed to AA4, on Hospice starting 3/12/12

connsteele
Posts: 232
Joined: May 2011

Cindy, so glad to learn that your David has improved. With the disease, small improvements are causes of great celebration.
As for the insensitive "dog" nurse, I understand how seemingly off-hand comments by a health care provider can cut deep. This happened to me, but way back in 1985, when our David was diagnosed with medulloblastoma at the age of 8. We had gone for a follow up appointment with his surgeon, who had removed all of the tumor in the cerebellum. David was doing very well (after the radiation that is) on the chemo of vincristine, CCNU and prednisone. The surgeon, whom we just loved, very empathetic and patient, had completed his exam and said how great David looked, but in the conversation, can't remember the exact context, included the words "David's uncertain future." Well, on the ride home, those words started circling around in my brain and I couldn't get them out of my head. I cried all the way home. My husband thought I was crazy..he was there and he said it didn't really effect him that way ( guys...sometimes!!) Well, about five years later, long after we had stopped seeing the surgeon, we learned that he had suddenly dropped dead with a heart attack at the age of 52. Of course we were sad..he was a wonderful surgeon, very kind, had so much knowledge and skill, and had saved our son's life. But in the end, whose life was the "most uncertain?" Goes to show that no one can tell the future, that life itself is uncertain and we make the best of it we can.
One thing I've learned from this is....as a mom, trust your gut! You know your David better than that nurse does, and if you know, based on your experience, what he really needs re: pain meds, then go for it.
Also, thanks for the scripture references. I'm not real knowledgeable about the Bible but I have the one you mentioned before, Isaiah 41:13, on my refrigerator and think I'll include the Psalms 34:17-18 one too. At times, I too feel like my spirit is crushed.

As for us, we see our David's NO this Thursday along with his third Avastin infusion. I'm thinking Dr. C will give a recommendation, based on David's clincal status, whether to continue the Avastin. Right now we are in Decadron "hell", as he is on 12 mg. Doesn't take naps, wants to stay up to the wee hours while I want to go to bed, and is eating everything in sight, which plays havoc with his diabetes. But he has had no severe headaches, and if this is what it takes to ward them off, then it's worth it.

Love to you and David.

Connie
m/o of David, age 35
dx AA3, April 2011, has progressed to AA4, on Hospice starting 3/12/12

barbn
Posts: 33
Joined: Jan 2012

I haven't posted for awhile but I have been keeping up with both David's. I am so glad to hear of the small improvements you are getting.
Don't ever give up. Keep your strength to pass onto David. All small improvements are a blessing.
Your NO BIG dog nurse is not God. She doesn't know how David will re-act to the Avastin. N0-one knows what the future holds accept God himself.
God is talking to you and telling you what is best. You are doing a wonderful job. You know David the best and what seems to be helping him.
Hopefully and I pray Avastin will work and start shrinking the tumors. DO NOT GIVE UP!
We also had a NO who every time we went in for a visit would remind us of the prognosis. I would cry every time I left his office. I finally got up enough nerve to tell him we did Not want to hear his DOOM and Gloom every time we come in. We know what were up against and we are going to stay optimistic.
My husband Jesse is doing ok. We will go back to Mayo on Monday the 26th and have another MRI to see if it shows lesions as they were hoping last time around or if the new spots are tumors. I am anxious but scared too.
Jess has lost weight from the chemo last round and is weaker but doing good.

You are in my thoughts and prayers
Know we are there for you!
barb

sadinholland
Posts: 231
Joined: Apr 2011

Cindy,

My heart is hurting for you and David. I know exactly what it's like to put on the strong face for everyone and then when you are alone, let it out. It is very difficult to handle. You have amazing strength. You may not even realize it, being that you are going through so much right now, how much strength you actually have. You are an inspiration to all of us here on this board. I am constantly praying for your son and your family. David is very blessed to have you. Hold on, stay strong and remember, God is with you every step of the way.

Blessings!

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Barb.

Wow! I just read Sierra's update on caringbridge....wonderful news! I'm so happy to hear about those great MRI test results. BTW, she explained the MRIs and the difference between the pictures from the two different clinics very well. That was a great analogy with the bread slices and the raisins.

About the genetic indicators...I believe that they are "indicators" but not guarantees. NIH told us that they were not that certain about how much to rely on the genetic testing. They said that they had seen people with favorable genetics do poorly, and people without the positive genetic indicators still do well. My David did not have the genetic "traits" (gene deletions in the case of his anaplastic oligodendroglioma diagnosis) that would show a favorable response.....yet he had a "dramatic" response to the BBBD and those chemos. It breaks my heart that we had to put off treatment during the cellulitis/blood clots/blood infection crisis and the tumors grew too much for David to have that treatment again....but I am praying that this chemo will reduce the tumors enough to allow more BBBD treatments in a few months....

Anyway, I am rejoicing with you and your family about your good news from the Mayo Clinic! :)

Love and blessings,
Cindy
PS My David is having a good day today....we are taking it one day at a time.....

barbn
Posts: 33
Joined: Jan 2012

Thanks Cindee,
I was "great" news for Jesse. It felt so good to hear and see Jesse smiling was wonderful. Everyone need news like that once in awhile. I'm glad to hear David is having a good day. Your right, take one day at a time and enjoy the good days.
Stay optimistic. I hope and pray you start seeing results with the Avastin,
Jess started chemo again on Tuesday (5 days on 23 off). I'm sure it will be a couple of tough weeks but we will make it. He has been hallucinating a little seeing dogs and little people. They think it is the medication Seroquel. So we stopped it last night to see if anything changes. The NO thought either he doesn't need it or maybe needs more so they decided to discontinue first.
Will keep observing. He also had a headache last night. First one in a long time. It always worries me but...... He is in Gods hands and he will take care of him.
Praying for David and your family.
Keep the faith.
Barb

BenLenBo's picture
BenLenBo
Posts: 142
Joined: Feb 2012

Cindy,
It's wonderful to read David is making a progress. Baby steps are amazing!!! Wow, I can not believe that nurse was so unprofessional, that was totally uncalled for, and should be addressed. Let her know your feelings and those of your family, part of surviving from day to day is HOPE, COMPASSION and a POSITIVE ATTITUDE! The physician she works for also, needs to be addressed about this issue, don't let it drag you down, but put a stop to negative behavior, thoughts or words.
I wanted to give you a hug, stress is hard on everyone, but your bond with your son is wonderful, and he is really lucky to have you in his life. Benjamin is the silent, thinker type, worries more about me than himself. We had the discussion about his cancer in the hospital, when he was going for more testing. I also, told him, that I would be there for him and everything possible will be done. Then I cried while he went in for his xrays for dysplagia after his first surgery. I also, cry when I am alone in the bathroom, bedroom, pickup or with my husband, but never in front of Benjamin. He recovered from his
dysplagia (minor problem) but seemed big to him at the time. Found it was the little things
he worried about the most, his ability to drive,family, friends, work, his home and fishing :o).

I received this from a friend and wanted to share with you:

I WISH FOR YOU!

COMFORT ON DIFFICULT DAYS,
SMILES WHEN SADNESS INTRUDES,
RAINBOWS TO FOLLOW THE CLOUDS,
LAUGHTER TO FEEL YOUR LIPS,
SUNSETS TO WARM YOUR HEART,
GENTLE HUGS WHEN SPIRITS SAG,
FRIENDSHIP TO BRIGHTEN YOUR DAY,
BEAUTY FOR YOUR EYES TO SEE,
CONFIDENCE FOR WHEN YOU DOUBT,
FAITH SO THAT YOU CAN BELIEVE,
COURAGE TO KNOW YOURSELF,
PATIENCE TO ACCEPT THE TRUTH,
AND LOVE TO COMPLETE YOUR LIFE....

Prayers for continues progress!

(((Hugs)))

Carol

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Carol.

Thank you for posting to me. I really appreciate it. I read your "wish for you" and thought it was very good. Some of the things on there...I need to put myself out to make that happen for me. Like looking for beauty, being patient, developing confidence, feeding my faith by reading the Bible and praying more....I need to start trying to focus on the positives. I'm really having a hard time doing that though.

One thing that I am really grateful for.....David hasn't had any more seizures. I hate them so much and they scare me so bad....so it's a big deal to me that he hasn't had any. And he has not been doing those repetitive purposeless behaviors that worry me so much. He has a little more strength too, though he is still very, very weak. He also has had some pretty yucky bloody noses. He had one for 30 minutes and it bled chunky stuff. I hope that it doesn't mean that his blood counts are too low for Avastin on Monday.....He is also more in touch with what's going on...even laughing at some of the funny stuff that happens in our household, and laughing with me when we watch The Office. :) I love that show.

We all went out for frozen yogurt the other night. David saw a car at the intersection and he said, "That's my next car." He was totally serious and matter of fact. It was a sporty car that he really likes. Then on the way home, he asked me when I thought he'd be able to move back to his apartment. Said he had some things to take care of, like meeting with a school counselor because he wants to go back to school for the fall term. I realized that he totally believes that he is going to beat this. It creates so much turmoil for me. I am so sick at heart because he doesn't recognize how far he is from being able to live on his own, much less drive and go to school. I won't even leave him alone for five minutes at home. I called my oldest son, Dallas, and talked to him about it. He said that I need to look on the bright side--that last month David had said that he didn't care if he lived or died...that he was just still fighting for the sake of his family and friends that loved him. Now he's thinking and planning on the future. Well, it gave me a paradigm shift in my thinking....and I am glad that David is feeling good enough to be thinking along those lines...but I still am just so sick at heart. But I've decided to force myself to only think about the positive aspects to David's condition right now....he haas shown some improvement. Not nearly as much as I'd hoped with the Avastin...but still, improvement is improvement, regardless of the amount. I mean, he could have had no response, or continued to worsen. I can't believe it hasn't even been two weeks since he did Avastin....

Anyway, thank you very much for your encouragement. I'm praying for you and Jesse and Sierra too!

Love and blessings,
Cindy

PS I had trouble posting this....this is my third try. I don't see it yet. I'm trying one last time. I hope it doesn't end up posting 3x....I'm sorry if it does!

connsteele
Posts: 232
Joined: May 2011

My heart was so gladdened to learn that David is improving...that is wonderful.I truly hope and pray that David will be one of those who have a dramatic improvement with the Avastin. And sooo glad to learn that the seizures have abated.

We went to see David's NO yesterday. And even though our David has not improved on the Avastin...even declined...Dr. C thinks that the Avastin could still be beneficial in reducing brain swelling and thereby we can try gradually reducing the Decadron down from 8 mg. to 4 mg. That would be great because the Dex is wrecking havoc with his diabetes and making him restless and causing insomnia. Plus he's complained of leg pain, which I understand goes along with taking the Decadron.

However, instead of going for the Avastin every other week, Dr. C says we might get the desired benefit by having it just once a month, as the Avastin stays in the system for 21 days. So, we aren't scheduled to have the next Avastin until April 25, along with an MRI and clinic appointment. Dr. C thinks that the MRI won't be necessary, it would be more for us. At this point, it's his clinical status that we're treating. It will be up to us to decide then. I don't want to put David through anymore than he has to.

This certainly is a rough road. David has no use of his right side and his speech is gone, which is so frustrating for him and us as we try to understand his needs and wants. His is also about 75% incontinent. We are grateful that he hasn't had any seizures and no bad headaches. But taking care of him is pretty much a full-time, 24/7 job for my husband and me. The stress and fatigue is taking a toll on our relationship too. I think the Hospice team is seeing this and they provided an aide to come and sit with David while my husband and I went out to lunch. Since this whole nightmare started almost one year ago, I bet I can count on one hand the number of times he and I have gone out as a couple.

On a side note, you guys have a favorite TV show that brings you a little reprieve from all this craziness. Our show is The Wheel of Fortune...David loves that show. So that's our special time together every night...watching Vanna strutting her stuff across the stage and enjoying Pat's corny jokes.

That's all for now. Let's all have a good day today.
Hugs,
Connie
m/o of David, age 35
dx AA3 April 2011, AA4 March 2012

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Connie.

Thank you for writing. I am inspired by your strength in the face of what is going on for your family and David. It has to be such a heartbreak that David can't talk. I would have a terrible time with that. My David has some trouble talking--he talks louder than usual and he has a flat tone to his voice, but he is sharp, even witty. But it's an effort for him to talk and he rarely initiates any conversations. But he can totally tell me what he wants and needs and he will talk to me about our day, The Office, etc.

My David was incontinent for a short amount of time after that BBBD and also during his hospital stay with the cellulitis. So I know what a huge deal it is to have to take care of your son with that issue. I found it overwhelming. I don't know what I would have done if David hadn't improved and stopped having that problem. I didn't have enough bedding and I never really found a good dependable disposable under garment that kept him dry. And clean. And the emotional impact of having my 28 year old son going through the shame and indignity of accidents....I feel so bad for you, going through all of that with your David.

My David is down to 12 mg of Dexamethasone now. He had been taking 16 mg a day. It seemed like a large dose to me, but he is one of the very few, I guess, who does not have issues with steroids. The only side effect that I have ever seen or noticed is the moon face and increased appetite. He's never been mean or moody or hyper or had trouble sleeping. (He did get bad leg and joint pains a few times.) I actually did not want to reduce the steroid dose because whenever we tried, David would get horrible headaches. I know that steroids do unseen things to people, but it's one of those balancing acts for us....are the side effects bad enough to cancel out the good that the steroids do for David? At this point in time, Dexamethasone is worth it to us.

I can sure relate to the stress on relationships too. It's definitely taking a toll on my marriage. We have such different ways with dealing with David's condition. I want to talk talk talk, and it hurts Larry to hear what I say. I try to talk to my daughters and son and my sister and my best friend and only tell Larry what he absolutely has to know. And any good things that I see. I guess I don't really need to tell Larry that much since David is living with us now and Larry can see for himself what it's like for David. And for me. I know that this is killing Larry too. He and David were especially close. Larry and I very rarely go out, just the two of us. I wish he would ride with me but riding and horses are not his thing at all. It bothers his back, and he says that in his free time, he doesn't want to do all the work and expend all the energy that riding takes. He wants to relax in the house, watch a little TV, etc. Not me! The last thing I want to do on a day off is lay around. I would ride every day, all day long, if I could. I ride until it's too dark for me to see the trails any more.

Yes, this is a hard road. I hate it, but for me, just taking it one day at a time makes it a little more bearable. I will work hard at having a good day today with you! :)

Love and blessings, always,
Cindy

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Dear Cindy,

I had to take a break from the cancer survivor network but I still thought about your David every day. I want to thank you for your candid honesty by which you describe the events of your life. At times it is almost unbearable to read. Imagining that your son cannot be as eloquent as he use to, not as agile and quick, not as happy, is heart breaking. But the truth about this disease must be told.

I am fearful of what the future holds for my sister but I do believe that she will survive. I have to.

I am glad that you are catching a break with avastin; and yes, why not resume the BBD when he is better?

love,

Julia

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Julia.

I just read your post about Kat's MRI and I am SO GLAD to hear that she received a good report and that she is doing so well.

I've really missed your posts here on CSN. I check yours and Kat's FB pages frequently...I'm waiting to see the pics from your trip to Egypt! I've always dreamed of going there. When I was 18, the artifacts and treasures from King Tut went on tour and I saw them on display in LA. One of my most awesome, favorite experiences....I loved it so much. Maybe someday.....

I had a little chat with Dr. N's nurse today. She's the one who writes prescriptions. (She's really a lot more than a nurse, though she herself says she is Dr. N's nurse. She actually has "MD" after her name.) Anyway, she is really concerned with the amount of painkillers that David is taking. She said she cannot write any more prescriptions for Dilaudid. It could jeopardize her license. David was taking 30 mg of extended release morphine 2x a day, and 16 mg of Dilaudid as needed (no more than every four hours) for pain. This was when he was in agony from the cellulits and the abscess being drained, etc. She had decreased the extended release morphine from 30 mg 2x a day to 15 mg 2 times a day, then 15 mg once a day. They also changed the strength of his Dilaudid pills from 8 mg pills to 2 mg pills. So David has been taking 4 to 6 pills at a time. That's still a lot less than the 16 mg he was taking at a time. And we are going through Dilaudid like candy. Which of course I know is not good. But David is having bad headaches...he's lying in his dark room all day---can't even take the TV being on...no talking, doesn't feel good enough to even sit up.....what kind of life is that? He really needs the pain medicine to stay on top of the headaches.

So the end result of today's talk is that I am going to have to drag David back up to Portland on a regular basis to meet with that palliative care doctor for pain management. He can prescribe more pain medicine that Dr. N's nurse can. But she says that she is afraid that David could have respiration suppression from that much pain medicine. She told me that I should put David back on a higher dose of extended release morphine and cut back on the Dilaudid. She said that the extended release is more for chronic pain, and the Dilaudid is more for pain after a surgery, etc. I told her that I didn't care what he took as long as he was relatively free from pain. So we are going to cut back on Dilaudid and take more extended release morphine. I am concerned because I am wondering if the morphine caused some of David's fatigue and some of his odd behaviors. He has had issues in the past when he's been in the hospital on high doses of pain medicine. Not Dialudid, but that extended release morphine. He would do bizarre things, like tear out his port access needles, get out of bed for no reason....one time he got up and left the hospital. Walked right out the doors. That caused a huge uproar...what a nightmare that was...his nurse was so upset. That was a really bad night.

I don't really know what to think. I have no medical background whatsoever. I don't know how much I can trust my own judgement and my own personal knowledge of David and what is working and not working. I guess we will just take it one day at a time....that's my mantra these days. I really hope that we can stay on top of the headache pain.

Sometimes I feel like I shouldn't say so much on this site. It's selfish of me because it must be really hard for people who are also battling this disease. I don't want people to look at David's situation and then feel fear because of what their future may hold. But I have always totally felt and believe (and I still do) that brain cancer is so very unpredictable, and there are so many different prognostic factors that no one should think that their case will follow David's footsteps. Everyone responds differently, and when David was first diagnosed (and for the first 2 years) I didn't feel like what was going on with other people was necessarily what would happen with us...for good or for bad. Everyone is so different...

I sometimes go back and re-read my old posts....I marvel at my former positive attitude and my conviction that we were going to be okay. I've become so pessimistic. It makes me so sad...and ashamed. I'm just feeling so beaten down. This is killing me too......

But.....I still have a lot to be thankful for. David is still with us. He is still himself. And we still have a chance with the carboplatin and the Avastin. I'm trying to be brave. I'll try harder.

Love and blessings,
Cindy

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

Your posts are not selfish at all. If anything, this site let's you get out all of the things on your mind to people who understand what you are going through. Any information you put on here could actually help someone else going through something similar. I like to get your updates, because we all care about you and David and want to keep up with his progress as well as be here for you when you need it. If I ever have the chance to make it to your part of the US, I would love to take you to lunch. I feel connected to all of you on here! God Bless you and David.

Prayers,

Michelle
Mobile, Al

BenLenBo's picture
BenLenBo
Posts: 142
Joined: Feb 2012

Cindy,
Your posting on this site give everyone a idea of what they may or may not face in the future of brain cancer. You and David are an inspiration to all on this site, for sharing the day to day triumphs and struggles. Reading your old posts from when David was first
diagnoised and to Present, helps Benjamin and I to understand what we may or may not face in the future. Help comes in many forms, and yours has been the messenger, and God Bless you for this.
We did find a diet that helps increase blood platelets within the body, naturally- we as a family were not to keen on the Doctor putting Benjmain on Decradon, even if it was for only 4 days. His body was building cells on its own, just needed a little time, he went from 38 to 73 in just 5 days. Found out that hanging with friends and drinking beer
lowers his platelet count. (It's the alcohol not friends that cause the problem). Well, he did go on Decradon, just finished his 4 days, will have blood test tomorrow, hopefully its at a 100, then he starts his Temodar for 5 days. Should be done day before Easter. The Easter Bunny is planning on Family, Fun and Food, with lots of laughter.
Wishing you all a Blessed Easter Season, and praying for strength for you, David and your entire family.

((Hugs))

Carol and Benjamin

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you, Carol and Michelle, for your kind replies. I appreciate your graciousness to me!

Still trying to take it one day at a time. The night before last, David had a really bad headache....way worse than usual. I gave him Dilaudid and extended release morphine and then he still felt terrible and thought he was going to throw up, so he wanted to take a Lorazepam too. I was nervous about so much medication, but he was miserable, so he took the Lorazepam. Well, that made him really out of it yesterday, and I spent the whole day crying of and on while lying on the couch in front of my fireplace with a huge fire blazing away (our weather has been pretty cold and rainy). Maybe I just needed a day to cry and let it all out and not do anything else...well, I did have the whole family over for dinner after church, even though I didn't go to church. When David has a headache like that, I start imagining all kinds of bad reasons for it. I try not to do that to myself, but I just can't help it. I start worrying that the tumor is growing huge, or that he's having edema in the brain, or that he is having a brain bleed.....

Anyway, David woke up this am and said that he felt pretty decent. He got online and bought himself a new iPad with some money that my brother sent to him to "get whatever he wants." We went to get bloodwork done in preparation for Avastin tomorrow, and we got a hamburger at DQ on the way. I drove along with my sunroof open (today's weather was 100% better) and watched David eat that hamburger and lick ketchup off his fingers and I wished I could freeze that moment in time for forever....today was 100% better than yesterday.

On the way home, David asked if he could return home to his apartment in Portland on Wednesday, the day after he does Avastin. The first thing I said was that he would most likely be pretty wiped out like the last time, from the Avastin. Then I told him that I know I'm an overprotective mom, and I worry about stuff, but I really think he should stay with us until the next MRI in a month. I asked him if he felt like he could give himself his own shots 2x a day, keep track of all the medicines he takes, cook for himself, shower alone in his apartment, take his clothes to the apartment laundry room...and he said yes. It makes me so sad because there's no way he is able to do those things. I am so sad that he doesn't realize it, and that he still so longs to live in Portland in his own apartment. But I said to him, "Isn't it wonderful that you are feeling good enough to feel like going home? You sure didn't feel that way yesterday!" He said yes, and he had a big smile on his face. So hopefully I was able to make something positive out of our conversation, because I know he is not happy that I don't think he should move home. (I also said that we should have a little family meeting with his dad, brother, and two sisters and see what they think about him going home to live by himself, just in case I'm off base on it. I know what they will say because they all have already talked to me about it...no way do they think he can live alone.)

I love him so much and I want him to beat this filthy horrible rotten disease so bad---with all of my heart and every fiber of my being. I won't quit hoping and praying for him to beat it until either he or I die, or he is healed from this cancer.

Love and blessings,
Cindy

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

You are a great Mother! I know I always say that, but your love for David shows through in every word you write on here! There is truly nothing like a Mother's Love! My wish for you is that you and your family have a wonderful Easter!!

You are always in my thoughts and prayers!

Michelle
Mobile, Al

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Hi Cindy,

You never say too much; your posts are an inspiration. Your love for your son is truly beautiful. I hope that David is doing better.

Regarding the pain medications it is a tought one; David should not suffer but at the same time too much narcotics will make him more confused and will exascerbate the symptoms of the brain tumor by making him unsteady on his feet and drowsy.

I admit that I was pretty terrified that my sister would need narcotics (Dilaudid, morphine, percocets, fentanyl etc..). And after her two operations we did not fill the prescriptions for pain medications. I told her to take tylenol. And it worked for the most part. So to this day, she only takes tylenol when she gets a headache. But then again, her headaches have been benign. I know from your description that David's headaches are excruciating.

Tons of love,

Julia

BenLenBo's picture
BenLenBo
Posts: 142
Joined: Feb 2012

Hello Cindy & David,
Just wondering how you are doing. Hope everything is going good and you had a nice Easter Season. My family got together for food, fun and games. Even had a easter egg hunt outside. Will probably be finding plastic eggs for years.
I'm getting nervous about my MRI coming up on April 13th. I feel great, ended up taking the decradon 8mg for four days, brought my platelet count up. My mom found a diet designed to enhance your platelets naturally with foods like, blueberries, blackberries, romaine lettuce, potatoes, chicken etc, easy to eat and prepare. Platelets went up to 128,000 in just 4 days, started my 4th month of Temodar and doctor has me on 4mg decradon with my 5 days course of Temodar. Doing good, still working, right now we are preparing and seeding the fields, have over 7,0000 acres to get done. AHHH Life in a Tractor, :o) I love it!
Fishing was great, caught my limit of Walleye the first day. Was up their with a bunch of guys, bachelor party- I was in bed by 10:00, some party animal! But, I was the only one feeling great in the morning!

Prayers!

Benjamin

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