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Treatment Tuesday

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

David is scheduled for chemo (carboplatin) and Avastin on Tuesday, if his counts are okay. We'll get bloodwork done tomorrow.

David had a better week this week--of course, when I say "better," that's a relative term. He was able to feed himself, make it to the bathroom (with help), talk a little....we even went out for lunch on Monday, and he spent an hour at my sister's yesterday with the extended family (about 35 of us). But he is very weak....he can only walk short distances and he needs a person on each side of him.

David's "brother from another mother" came for a visit. His name is Josh, and he and David were college roommates. They played college basketball together, and they are really good friends. He's David's closest friend, and vice versa. Josh has had a really hard time with how sick David has been. I feel bad for him. David really loves Josh and hadn't seen him for a few months. I didn't tell David that Josh was coming, and when Josh walked in his room, the look on David's face....I had to leave for a few minutes to get a grip. Josh spent a few hours with David and it totally wore David out, but it was worth it.

I told David about the upcoming treatment on Tuesday, and the look on his face....I DREAD it for him. But at this point, I'm glad he's well enough to get treated. I still am hoping and praying that the treatments will beat the tumors back. He's only had the chemo two times, and we haven't done an MRI yet to see if it's helping. I don't know if the chemo is helping or making him sicker. Sometimes
I'm afraid that the chemo is going to kill him. The MRI should give us an idea what's going on. It's scheduled for the first week in June.

Please excuse the typos and bad grammar. It's 5 am and it's been a long night---and I'm typing with one finger on my iPhone. I hope that you all are doing good and going forward in your battles against this beast of a disease. I think about you guys all the time and I check CSN frequently to see how you all are doing. Not a lot of posts lately.... I'll take that as a good sign that you guys are doing well.....

Love and blessings,
Cindy (sleepless in Salem, Oregon)

mighty6
Posts: 47
Joined: Sep 2011

Dear Cindy,

I don't post alot. but I think of you and David often. (All others on this site as well.) Cindy, you are one of the greatest mom I ever know. From this perspective, David is very lucky. Have a late happy mother's day!

I will keep David 's upcoming treatment in my prayer!

-- Jane

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

Thank you, Jane! I really appreciate your prayers! And I appreciate your saying that I am a good mom. I think just about any mom would be doing the same exact thing, though.....

I had a nice Mother's Day. Of course, I had to fight the thought that this would most likely be my last Mother's Day with David....I tried to banish that thought from my mind but it was hard.....David and my immediate family (husband, other son Dallas, daughters, husband and fiancé, and grandkids all went to my sister and bro-in-law's home and spent the afternoon barbequing with the extended family. 34 of us all together. It was so good to see David out and about but it took a lot out of him. He left early with my husband and I stayed and drank coffee and ate desserts and just quietly chatted with my sister and her adult kids, and my girls.

Earlier in the day, I went shopping with my daughters and I bought a dress for my daughter Cathy's wedding. She's getting married on 6/30. I'm glad to have the dress bought and out of the way. We are trying to figure out what will be best for David for Cathy's wedding. Will he be able to attend? Should I pay a nurse to stay with him at home? (We have a few friends who are nurses that we trust to care for David for an afternoon.) My daughter wanted Dallas and David to walk me down the aisle and seat me at the wedding but I don't think that David will be at all able to do that. If he is like he is right now, I don't think he can even come to the wedding. We cry when we try to plan what to do about David and the wedding. We decided to wait until closer to the wedding before we make any decisions.

Here's a little bit of history about me and David and Mother's Day....

David had brain surgery on May 8, 2009. When they removed the tumor, they did a frozen specimen and when they examined it, they told us that it was benign and he wouldn't even need any chemo or further treatment. There was a huge crowd in the waiting room during the surgery, and we all cried and hugged each other and thanked God. When I saw David in recovery, I told him, "David, you're going to be okay! You get to have your whole life!" He said that he felt better than he had ever felt before...so grateful, so full of hope, so happy. This was on a Thursday or a Friday. That Sunday was Mother's Day, and I told everyone that it was the best Mother's Day that I ever had in my entire life, and I would never, ever forget it. We went home early the next week, and they told us that we would have a follow-up appointment on Friday to go over the pathology report and to make sure David was recovering from surgery. So on Thursday, I called to confirm the appointment, and they told me that we didn't even need to come up to Portland (an hour drive) for the appointment. They would just talk to us on the phone on Friday morning at 10 am. So on Friday, our whole family got together and we made the call and put it on loudspeaker. The woman from the surgeon's office said, "I have been instructed to ask you to come up here as soon as possible." I said, "WHY????" She said, "I have been instructed to ask you to come up here as soon as possible." I said, "You won't tell us why?" She said, "I have been instructed to ask you to come up here as soon as possible." I said, "You are going to make us drive up there, not knowing what is going on?" She said, "I have been instructed to ask you to come up here as soon as possible." I'm serious...that is ALL that she would say. My husband said into the phone, "We are leaving right now and we will be there in an hour." He hung up and David put his head down on the table and wept. We all piled into our cars and drove up to Portland without talking, and the surgeon sent us to our future NO and the NO said, "You have an anaplastic oligodendroglioma. Your median life expectancy is three to five years." And so our nightmare began.

I've never felt the same about Mother's Day. One day I will learn to be grateful.....I'm just not there yet.

Love and blessings,
Cindy

Fight56
Posts: 12
Joined: May 2012

cindy, like many other people on here, I am thankful for your posts about David. You describe the roller coaster of emotions in an honest way. I really think you should consider writing a book about your experience, it would help so many people feel like they are not alone. Sometimes a person doesn't need comforting words. Sometimes they just need to be understood.

I kind of understand about being given hope and then having it snatched away so quickly. When my mum was diagnosed in April, my dad (who doesn't speak/understand english very well) told me they had caught the tumor early. I was so relieved! And I didn't know at the time that usually brain tumor = cancer. When I finally talked to the nurse and she told me it was a GBM, my face got so hot. I wasn't angry at my dad because he didn't (and still doesn't) know much about brain tumors. I've taken on the responsibility of talking to her medical team now to prevent further misinformation.

What a horrible way for that woman to talk to you. It is shocking how many people in the medical community have no ability to communicate like a decent human being.

I hope David will be able to make the wedding. If not, maybe you could livestream it online? That way he would still be able to watch.

jenners1980
Posts: 4
Joined: May 2012

Hi cindy, I've been reading a lot of your posts and feel inspired by your determination and strength. I too have oligodendroglioma grade 3, I have tried to blog my story but can't seem to find it now, I was diagnosed in feb and since then feel like I've been jumping hurdles with blood clots, hair loss (I have very long hair) sickness and tiredness. I'm almost at the end of my 6 week course of radiotherapy and hoping that it's made a difference. Before this I had a good job and was doing a University course, now I'm questioning every word that I write or say. I pray for David as well as myself and hope we can stay strong to beat this.

Jen xx

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

Hi, Jen.

I hate to hear that you are in this battle, but thank you for writing to me. If I can say or write anything that can help you, I am very grateful and glad.

David is really having a hard time, but please don't look at his situation as the standard example of what AO looks like. He's had a lot of other variables that most people don't have, and those variables have complicated his status. I struggle with how frank and forthright I have been on this site because I don't want to bring anyone down. I fear that I am selfish about some of the things I post...it's just that this site is the only safe place that I can vent. I don't have to worry about David and family seeing how frightened and concerned I am. I post on FB but I am very careful because David and just about everyone I know gets on FB and reads my posts. So I choose my words carefully for FB. But I do not want to scare anyone and make anyone on this site think that what is going on with David is how it is with all AOs.

David did radiation too and he was sick and tired during it too. I'm very glad to be able to tell you that he pretty much fully recovered from radiation. He also was going to school at Portland State University and he was able to continue with his classes. He even had a 3.87 gpa. So even now as you question what you are writing and saying, please remember that you will recover from this. David was so fatigued by the end of his course of treatments that he said it was hard for him to even hit snooze on his alarm clock. It took a few months, but he was back golfing, playing basketball, riding his bike, working, and going to school. He worked for Apple and he was a specialist so he had to know everything about all the Apple products. He was able to continue working after radiation. His hair also grew back in pretty fast. It wasn't quite as thick as before, but he still had plenty, and he looked great. David and I never regretted doing radiation and if we were going to do it all over again, we would do radiation again. I know that people have long term side effects, but we figured he wouldn't live long enough to deal with side effects if he didn't do radiation.

Another thing that is in your favor is that you are younger than most people who have an AO. Being younger is associated with better long term results. Younger people are better able to withstand the treatments and fight harder and recover faster.

Another thing to remember....everyone is different. Just because a treatment didn't work for one person does not mean that it will not work for the next person. And another thing.....one day you might feel really sick and weak, and then the next day, you could feel great! It's really a roller coaster of a life. We had a physical therapist tell us that our days would be like Oregon weather....one day could be bright and sunny and warm, and the very next day could be cold and rainy and gloomy. But that doesn't mean that the next day won't be bright and sunny again. It's so true!

I will be praying for you and thinking about you. Please keep posting and keep us up to date on how you are doing.

Love and blessings,
Cindy

connsteele
Posts: 232
Joined: May 2011

Hi Cindy,
I know what you mean about feeling like you can't be too negative on this site: afterall, it is called the "Cancer Survivor Network." I think it serves a very important purpose, and I have been logging on for over a year and received some really good info about treatments, etc. Plus, I feel like I've walked beside all of you who are on the same path and feel a deep connection. This site does offer hope, and I took great comfort in reading about long term survivors. So like you, I wouldn't want to write anything on this site that destroys people's hope.

However, about two months before David passed, I subscribed to a brain tumor caregivers email list serve. It was really helpful to read about, and write to, others dealing with the unique trials and tribulations of caregiving for a brain tumnor patient. Seems like those on the list are further along on a path that hopefully those on this site don't have to travel. The subscibers don't feel like they have to be positive all the time.

the address is:
btcaregivers@braintrust.org

I truly feel your pain in your situation. We've been there. But please know that I'm sure in your son's eyes, you are his hero, doing everything humanly possible to help him and make his time the best it can be.

Connie
mother of David
dx AA3 April 2011 at age 35
Passed away April 14, 2012

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

Wishing David a successful treatment on Tuesday! Making small strides is great, after all
Avastin has been describe as a rollercoaster medication. How often is this medication administered? is it always administered with Carboplatin? What results are expected and how soon after taking this combination of medications? Will David improve the longer he has between treatments?

How great, that David was able to get out and about, does the spirit good. It was nice that his closest friend is still there for David, I can almost see his smile. Benjamin always has one heck of a smile on his face, when hanging with his friends. We are so thankful that his friends are still in the picture, so many times they shy away, not knowing what to say or do. Trying to dealing with his cancer/no cancer in their own way. We have family on my husband's side who have never expressed on word of compassion or caring since Benjamin was diagnoised.

Here's a (((HUG))) for you! Watching our son's go through all this treatment and testing
is one of the hardest things we will do at the present moment. And our son's as so grateful we are there for them.

Take Care!

Carol

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

Hi, Carol.

I wrote a huge long post to you that took me a long time to write....too long, I guess, because when I went to post it, the page reloaded and I lost the whole post. I was so frustrated...I need to go back to writing and saving it in another program and then pasting it into CSN when I get done. I will try to write again over the weekend. We are doing okay but I am just so tired these days.

Love and blessings,
Cindy

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Cindy:
You are the greatest Mom! Your love overflows and surrounds David. I think of you often and pray for you and David. Sarah finished her chemo the end of April. She looks good. She was doing good, but last night she said she feels like she is having trouble speaking. I see that she is very tired. I am hoping she is just tired. My worry and fear is wearing me out. I try to remind myself, "O ye of little faith.. Have faith Edna!" It is a rough road. I am glad David got to spend time with Josh - those moments are essential for their spirit and will to fight. We had an MRI yesterday, but have not heard back. Tomorrow we do a PETSCAN. I hope you a wonderful Mother's Day. God Bless you Cindy. God Bless David. Life in Abundance! EVeryday.
Love, Edna

AndrinafromEngland
Posts: 10
Joined: May 2012

Hi Cindy
I've had epilepsy since I was diagnosed with Oli grade II in 2001 on my left frontal lobe. I had op 6 mths later but epilepsy remained. Apparently now I need another op as regrowth dangerously close to motor region and language/speach centre.Apart from focal seizures I am fine.My biggest fear right now is the thought of my fits getting worse. I suppose what I'm looking for is for someone to tell me that I wont end up having uncontrolled seizures but I read one of your entries about David having so many seizures which medication couldn't stop.Is his tumour on the left like mine? BR Andrina

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

Hi, Andrina.

Just wanted to let you know that David's tumors started out on the right side but have crossed his midline now and are in both hemispheres. He started with seizures when he only had tumor on his right side. I also want to tell you that his seizures have gotten a lot better. He hasn't been having them nearly as frequently and they haven't been those horrible tonic clonic (grand mal) ones. After the last seizure, his epilepsy dr upped his Gabapentin. He added an additional dose in the afternoon. So now David is taking 2,000 mg of Keppra 2x a day (total 4,000 mg a day) and 600 mg of Gapapentin 3x a day (total 1,800 mg a day). His dr said he is maxed out on the Keppra but still has a lot of room to take even more Gabapentin.

When David feels a seizure coming on, he can take a 1 mg Lorazepam (also known as Ativan) and it is supposed to break the seizure cycle. We have found this to be helpful in preventing a seizure. But it also really wipes David out. He sleeps for most of the day when he takes a Lorazepam, probably because of all the other medicines he's taking too....

I don't know enough about brain tumors and seizures to ever be presumptuous enough to tell you that you won't end up having uncontrolled seizures, and I don't know about your medical history and situation....but I think that you have a good chance of managing your seizure potential. Do you see a seizure specialist or an epileptologist? I think that would be helpful in finding a way to reduce the chance of seizures.

Our epileptologist told us that for David, seizures would be a way of life. He has too much going on in his brain with tumor load, necrosis, edema, swelling, and the effects of chemo. I agonized about that bit of information, but we are learning to recognize the signs and try to stave them off.

I hope that you are successful in preventing seizures. Please keep pursuing ways to stay on top of them as much as possible.

Love and blessings,
Cindy

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

How did the chemo go on Tuesday?

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

Hi, Brenda.

It went much better than the previous time. I don't know why. I am wondering if the last time, he had a lot of tumor load and when his brain swelled from the treatment, he had a hard time. This time I am wondering (and hoping) that he had less load because it was reduced from the previous treatment and so when he had swelling from the chemo this time, it didn't impact him as much because he had more room and therefore more tolerance for swelling. All my own theories, though.

Also, because he's been sick with a chest cold, he went a full month without any treatments. We had to postpone Avastin for two weeks in a row. I think the time off from the chemo allowed him to recover a little more strength, and I wonder if that helped him to tolerate this treatment a little better. I just don't know....but I am grateful.

Of course, this is all relative. 3 months ago, I would have said that he was doing really bad right now. He has some accidents when he doesn't seem able to understand that he needs to use the restroom, and he can't walk without assistance. He has spells where he is disconnected and can't seem to carry out simple tasks. Like he stops and stares in the middle of eating. And he's been doing that strange repetitive stuff. But he talks totally coherently and he understands totally what is going on. Talking seems to be a huge effort though. He doesn't talk much and I have more success when I ask simple yes and no questions.

I am so tired these days. Writing posts is taking all of my energy right now. I hope things settle down and I can write more. I have a few things I want to say to that neurologist in training who posted on another one of my threads. And I wrote a huge long reply to Carol, Benlenbos' mom, and it never posted so I want to write to her again too.

Thank you very much for remembering about David's chemo and for asking how he is doing. I really appreciate it.

How are you doing, Brenda? I'm sure that Mother's Day must have been very hard for you and your family. This is the first one without your sister, and it must be so painful. I had a hard time and I still have David with me.....

Love and blessings and peace to you,
Cindy

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