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day by day, I guess

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

We are just plodding along here, taking it day by day, one day at a time. I think that David may have hit a plateau. He seems like he is holding his own now, not improving a whole bunch, but not going downhill either.

David went to a movie with a friend earlier this week...his old college roommate. I'm always so very, very happy when David gets out. He's feeling so fatigued that it seems like a supreme effort to get up, get dressed, head out and do stuff. He always comes home and naps. Anyway, he said he had an okay time. He thought the movie was dumb and they left in the middle of it. I wonder if it was dumb or if David just has a shorter attention span? I have to be careful that I don't create issues when there isn't any issue there.

David went to church with us on Sunday. Church is a big deal because it's pretty overwhelming. We have gone to the same church since before any of our kids were born--for over 30 years. The people there are family to us. So when David shows up after being so sick and having been gone for over a month, everyone is so glad to see him, and they tend to gather around him and ask questions. All because they care, and David appreciates it and he's glad that so many people care and are interested, but it's hard to keep answering the same questions...how are you feeling, etc. He was really wiped out by the time we got home. Then we had the family over for our regular Sunday dinner. David took a short nap, then he played Bananagrams with me and his two sisters and his brother. It was wonderful to have him play with us...but it was sad too, because he spelled some crazy words. He used to beat us all the time but now he spells a lot of things phonetically. It's sad, but in some ways, it's funny because he's pretty creative and he comes up with some pretty unique words! I figure that I have two choices....let myself be sad and depressed because he doesn't spell that great any more, or choose to be happy and grateful that he's sitting at the kitchen table with his family, playing a game. I chose to be happy and grateful.

We were driving to a medical lab to get his weekly blood tests done today, and David saw a girl walking down the street. She was walking pretty fast, and you could tell that she had a purpose. David watched her and said that when he sees someone walking like that, he thinks that he'll never do that. I asked him what he meant, and he said that he doesn't ever see himself being able to walk like that again, with so much energy and zip. It made me so sad. But I told him that he is still recovering from the chemo and that when he is all done with the chemo and he has a chance to recover, he will walk like that again. I reminded him that he walked the puppy all around the block the other day, and that he was walking over a mile two times a week before his last chemo, to get to the lab that was doing his bloodwork. He didn't say anything---I hope that it made him feel a little better.

David is much improved....way, way, WAY better than when we got home from the hospital, but he definitely has some issues that he didn't have before. For one, the spelling thing. And he moves really slowly now. His hands shake really bad. I think that might be from the keppra? Not sure...He also does some odd things...not a big deal, just different. For example, he had an open can of Coke, and instead of putting it in the cupholder, he set it down on the floor of the car. He never remembers to put his seatbelt on. He is white now....not pale, but totally white. He looks like a different person. His face is really puffy from the steroids and he is totally bald. He even lost most of his eyebrow hair and eyelashes. None of these changes are life threatening but they are still hard. This is the first period of time that we have really seen a visible indication of the changes that cancer has brought to David. I hate it--but it's the way it is.

David said to me today, "Thank you for taking such good care of me. Thank you for cooking for me and driving me everywhere, and for putting your life on hold for me." I told him that I'm only doing what I want to do. I wish I would have thought to have said that all I have really done is change my routine a little. He really is amazing....he doesn't complain or ever talk about being afraid or anything. He's really unselfish. I could take some lessons from him.....

Anyway, we are basically marking time until his next treatment on 1/24-1/27. I'm dreading the MRI and the results, dreading the stay in the hospital, dreading how it may affect David....but refusing to think about it until I absolutely have to. I called our NO with some questions on Thursday and they never got back to me. I hate that they don't return my calls. It's so disrespectful and callous. I'm not calling about a hangnail or a runny nose....I am calling because my son had BRAIN CANCER. I will have to start calling and being nasty, and I hate doing that. But I need some answers....

Love and blessings,
Cindy

sadinholland
Posts: 237
Joined: Apr 2011

It takes a lot of strength to deal with cancer, any type. I admire David in how he is handling all of this. He is so young. Although I always read ALL your post, I don't often respond because I don't know what to say.Keep the faith! Love and Blessings to you any your family as well!

sonfollower
Posts: 26
Joined: Nov 2010

Cindy Sue,

thank you again for sharing. I have to say that I can relate to Davids thinking. I have done the exact thing, only I have not said it out loud. I see people running, biking, playing sports, hiking and I too think "I will never do those things again." It makes me sad but at the same time it is a reminder of what this cancer does to our bodies. I keep hoping that some day I will be strong enough to at least be able to do yard work and house cleaning. My loving husband has been doing most of the chores that I used to do. He never complains.

Blessings,

Lora

tmfaubus
Posts: 23
Joined: Jan 2012

Everday tasks take much more energy. There have been times I have barely made it to the toilet. Chemo and this tumor have made me virtually paralyzed on my right side at times. My wife has been great helping with every aspect of my care. I honestly do not know where I would be without her. My point is we all have to keep working towards the fullest recovery we can make. It is comforting to see there are others trying to get their old lives back..How many of us were given death sentences ?

sadinholland
Posts: 237
Joined: Apr 2011

TMfaubus,

I never really thought about it like that but you are so right, the NO gave my husband 3-4 years. I really wish they wouldn't do that because when another month, year passes I am more and more afraid that he is getting closer and closer to that 3-4 year mark. I need to keep in my head that tomorrow isn't promised to any of us. I could go, anybody could go even tomorrow. You don't have to have cancer. We need to live each day with our loved ones and thank the Lord for allowing us to see it. I am glad you wrote what you wrote, it really opened my eyes. We all live and we all must die. We don't have to accept what the stats are, as only God knows when it's our time. I am going to, once again try to focus on all the many blessings in my life, I am thankful but I am going to be more thankful. Thankful for the present and hopeful for the future and thank God everyday for what he is doing for us in my life, my husband's life and our family's life. My husband is truly a different person since all of this has taken place. He was a good person before this, and he is an even better person now. He has taken on the attitude that life is short and we shouldn't dwell on the small stuff. Let go and let God.

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

You know, just thinking about things since I read your post, sadinholland and TMfaubus....if I just really learned to take it one day at a time and focused on all the small blessings too, I could be relatively at peace a lot of the time. Like today. If I just took today for today....David slept in, had a headache that oxycodone took care of, then had breakfast. He just got back from a 20 minute walk with his puppy in the beautiful sunshine. It's not even really cold here today...in the mid 40's....and now he's taking a shower. We are going to head to Starbucks and then go to his physical therapy appt. They are going to try to do some things to help with pain management, like massages and those electrode things on his neck muscles. Then it's home for a spaghetti dinner. Really, a pretty dang nice day. I won't let the worry about our tomorrows or the grief about the past spoil this day for me. I really do have a lot to be very thankful for.

Love and blessings,
Cindy

Young mom
Posts: 4
Joined: Jan 2012

From time to time, I have come across this message board and have been inspired and intrigued by your writings, along with so many others who are in the same boat as caregivers to someone who means so much to us. In my case, it's my beloved, dear, amazing husband...whose name happens to be David. There was a post that you wrote to someone several months ago, I think. And it was about not getting hung up on numbers...there was a quote that I want to post on our fridge so that I can look at it everyday and remind myself. But I can't remember how you worded it and can't seem to find it on the message board. Do you remember? It was something about insisting on not being a number. And that it doesn't define you or something. If you know the one, please reply. My husband was dx in June 2011 with a Grade IV Glioblastoma. We have 3 amazing children and he is an amazing husband and father. Our amazing world came crashing down on that day and I have been trying to keep it all together for our family ever since. He has major speech and mobility deficits that do not seem to be improving after many months of rehab physio. Everyday, I wish I could just have one more day with the David I knew. Everyday, I shed countless tears in silence while trying to maintain a strong composure for him and the children. And everyday, I am faced with this unrelenting beast of a cancer that is taking my husband. I would like to think that God is holding me in the palm of his hand but it really feels like I'm flying solo on this one. So, I thank you for your inspiring words of wisdom, faith and undying love for your son. Just when I feel like I can't do this another day, I read a post from you and the optimism and strength returns to me.

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

Thank you, Young Mom. I am honored that anything I said helped you in some way. I just typed out a huge long reply to you but when I went to post it, it disappeared. I hate when that happens...I will try to write it over in the next day or two.

I don't remember what I said in that earlier post that you mentioned...I've posted so much that I can't remember what I've said or where I posted it. II think I post the same stuff more than once because I can't remember what I've already said. 'll keep looking for that post, though.

I know what you mean about wanting your David back. My David is not the same either. One of his friends, a girl he worked with at the Hilton when they were both waiting tables and working their way through college, posted on David's Facebook wall, "I miss your jokester self." Such a simple little post, but it broke my heart because David used to be a jokester, full of fun, laughter, joy. Now he's quiet, sober, even detached sometimes. But he's still my David, and I am grateful that he is here. And tonight he went to a movie with some friends, and he had a good time. He came home and smiled when he told me about his night. I am forcing myself to live one day at a time, and it helps me a little. It's a real mental battle. Sometimes I have to say out loud to myself, "You can do this." It seems silly, but it helps me to believe it.

I want to end this post with something wonderful and profound, that will encourage you and help you and give you optimism and strength, but I can't think of anything awesome. I do want to tell you that I believe with all of my heart that you are in the palm of God's hand, and that He feels your pain and He weeps with you. Even when you feel alone, please know that feelings are misleading and you can't trust them. God says He will never leave you nor forsake you. Those are not just pretty words...it is the truth. My favorite Scripture right now is this one: "For I am the Lord your God Who takes hold of your right hand and says to you, 'Do not fear; I will help you.'" Isaiah 41:13. It's such a perfect promise to me. I woke up every night when I was in the hospital with David for that week in December, and I would say this Scripture to myself over and over again.

You are not alone. Please stay strong and hold on to hope. I will be praying for you and your husband and your children.

Love and blessings to you,
Cindy

connsteele
Posts: 232
Joined: May 2011

Thank you Cindy for the scripture reference. I'm not a consistent reader of the Bible, but I found this one to be very comforting. Will post it to my refrigertor.
I too miss the person that our son David (dx 4-13-11, AA3, inoperable) use to be...now he can't live independently, and his days consist of, when he feels like it, video games and TV.
But I am grateful that he is tolerating his new chemo regimen well (CCNU and procarbazine). So far, blood counts holding up. And other than some fatgue (along with his permanent speech, and fine and gross motor deficits), he is doing OK..no headaches, seizures, or nausea.
What this experience is teaching me is that one must be thankful for the simple things.

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