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feeling discouraged

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

Well, for those of you who are following David's progress....

David seemed to be recovering amazingly well from his brain surgery on 9/27. That was on a Tuesday...he was back attending college on Monday. He had a pretty good week...he was tired but SO happy to be back at school, and he was thinking that he could get on with his life. But now he's having those blindingly bad headaches again. We had to call an ambulance at 5 am today because his headache slowly escalated all night until it was a 9 1/2 on a scale of one to ten. He's tough, so when he feels like he needs to go to ER, I know he's in serious pain.

They gave him Dilaud via IV and did a CAT. The CAT didn't show any bleeding or swelling or any reason for him to be having headaches. They think it might be from the brain surgery. They said that when they go in there, they move things around and it can cause some issues. So they discharged him. His headache was at a 6 when we left. We picked up some breakfast and after we ate, he took a nap. His headache was about a 5 by then. I went home while he was napping. He got up at 3 and it was worse. He took oxycodone, Keppra, Tylenol 3, and his steroids and laid back down. He got up at 6 and his headache is back at a 9 now. I talked to the neurosurgeon on call and she had David take an oral Dilaudid and we are waiting to see if that helps.

We are pretty discouraged. David had the surgery to help with the headaches, and I don't understand why he didn't have headaches the first week after surgery, and now he does. Today was the first time since David was diagnosed in May of 2009 that my husband Larry (David's dad) broke down and wept. He's been so strong and positive without being unrealistic...but David's pain and our worry was just too much for Larry today. It makes me feel terrible to see Larry weep and to know the pain that he is feeling for David.

Today David said that he is thinking of dropping out of college. He said he's not sure he can do it. It broke my heart. I hate for him not to have that goal and the vision for his life. On the other hand, it doesn't matter one ounce to me if he doesn't go to college. It wasn't supposed to be a hardship, an affliction, a costly endeavor for him...it was supposed to be for his good and his enjoyment. I told him that there was no wrong choice...he should just do whatever he wanted to do. I suggested taking just one class for now, and maybe adding more next term. He said he'd think about it. I could hear the discouragement and defeat in his voice.

One good thing. I spoke to our NO's office and I asked, with fear and dread in my heart, what the pathology report showed. They said that the tumor they removed did not show an increase in grade. It's still an anaplastic oligodendroglioma. They said that was good news. I was so afraid that they were going to say that it had gone up a grade. I am guarded about that news though, because we haven't talked to the NO personally. We could go in and he could say stuff like even though it's a grade three, it's growing and behaving like a grade four...or he could say some other crap like that. I never know until I hear it from the NO himself....we've had too many nasty surprises for me to rest easy.

So that's where we are at. Still trusting in God, still holding on to hope, still fighting hard. Just a little worn down today. Hopefully tomorrow will be better.

Love and blessings,
Cindy in Salem, OR
PS David just texted me. His headache is at a 7 now so maybe the Dilaudid is working a little.....

mighty6
Posts: 47
Joined: Sep 2011

dear Cindy,

You and David are both amazing. I can not imagine how you two managed all those up-n-downs in the past two years. We don't know what God's plan is for us all. but we will just have to do the best we could. Please keep up your good work!

Jane

connsteele
Posts: 232
Joined: May 2011

So sorry to hear about your son's setback. I know the anguish you are feeling for your son, when he is in pain, not only physically, but also emotionally as he has to give up some his plans due to his illness. Our son, also named David, was dx with AA3 on 4-13-11, age 34. He too had to give up on his plans to finish college. Also had to give up his job and his independence, moving back home with us. It was so hard to see him deal with all his losses.

Seeing your husband break down is hard too, but sometimes I think crying is the best therapy for everyone. A good, hard, long cry is a big release.

I hope and pray that both of our Davids will overcome this major challenge and go on to achieve their dreams. The dreams may be scaled down a bit, but nevertheless, they are worthy and deserve to be celebrated.

Hugs and prayers to you both. Connie

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

Dear Cindy,

It is terrible to see someone you love so much suffer. I am also distraut and puzzled asto why David is getting headaches. The surgery was to alleviate the pressure. He got a CT in the ER, that seemed stable. Was it compared to his other CTs? Should we get an MRI?

There is good news in your post: the grade has not changed. I hope that this will be confirmed by the NO.

Tons of love,

Julia

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

Hi, everyone.

The ER doctor and the fellow from David's neurosurgical team felt that the CT would show them what they needed to know...primarily if there was bleeding and/or swelling after surgery. They didn't see any changes in that CT from the ones they did before and immediately after the surgery, and they said that they couldn't see any physical reason for his headaches. They think it's an aftereffect from the surgery.

David made the hard choice to drop out of college. I don't know if he will go back at a later time. He was receiving financial aid for schooling so I don't know how that will work. If you drop out for a term, I think it hurts your eligibility. We can worry about that later.

David has been doing better. After I last wrote and added the PS about his headache being a 7, it continued to go down and it's stayed at a 1 or 2 ever since. He is able to do stuff with a 1 or 2, so he's feeling better. I wish he didn't have a headache at all, but I don't know if that will be possible. We have an appt with the neurosurgeon today so maybe he can give us some insight---though I doubt it. They told me that they only do pain management during the surgery and recovery time, and then David's NO is responsible for pain management. David has had a 1 or 2 headache pretty much all the time since his first surgery in 2009, so I guess he might have to live with headaches. It could be a lot worse....

I don't think we will hear any bad news today, but we've had so many nasty surprises that even though I know this is just a checkup, I still have a stomach ache and a general feeling of heaviness. I need to get over being like this! The big appt with the MRI and NO visit is next Wed. That's the appt I'm really dreading, where we will discuss "prognosis" and the next treatment plan. I get emotional just thinking about it...

I'm weird. I go back and forth between being really frightened for David, and then feeling like I just cannot believe he is going to die from this. I guess it's some form of denial. I need to go back to focusing on taking it one day at a time. I've been really struggling since that last ER visit. I don't really know why...I can't put my finger on it. It does help me a lot to see David doing so much better, though.

Love and blessings,
Cindy

connsteele
Posts: 232
Joined: May 2011

I feel your pain as I have it almost everyday...a real heaviness in my chest. I do a lot of sighing. Some days it seems unreal for me, and then other days, it's more like I'm on automatic pilot. When I get flashes about what the end might be like, I give myself a mental "dope slap"...as in, "stop it!" I also do that when I get a real sad feeling thinking about all the losses that our son David has experienced: his job, schooling, independence. It's funny, it hits me when I'm out doing routine, simple things that he used to do on his own, like going to CVS pharmacy and Starbucks. David used to go there to get his prescriptions for his diabetes, and while waiting for them to be filled, would go next door to Starbucks to get coffee. Now, when I go into any CVS, I have to fight off this deep feeling of sadness, that he can't do simple things like this now. Same for when I go grocery shopping. Thinking about how he used to do these routine, everyday tasks, but can't now. Sometimes I wonder if we develop mental callouses against this sadness. Hope you are getting some support from family and friends.

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

Hi Cindy:

You are such a good Mom. There is no worse worry or pain than seeing your child suffer. My 18 year old is fighting Anaplastic Astrocytoma, grade 3. She graduated from high school and really wants to go on to college. We are fighting for her life right now though. Infusions, 2x a month. I am like you, wore out. Full of fear and other days full to brim of faith. God is with us. I claim it. I know it, but sometimes, I am weak and wore out and move around in fear.
Currently, Sarah has to finish chemo until next May and she also has a lot of therapy: speech, physical and occupational. I am like you - I don't care if Sarah ever goes. I just want to keep her with me - always. But, I want her to be happy. I pray everyday. I claim new health on her too. Today, I am claimin new health on your son David. God's blessings to you and yours. Edna :)

CatherineSch.
Posts: 14
Joined: Oct 2011

Hi Cindy,
I am pretty new at this site, and you and your son's story was what really plugged me into this. I was just running around Olig. information sites, came onto this, and followed your story, as far as I could with my computer inability.
I think you two ROCK, and I hope and pray, that David will have gotten relief, and calm by now, from the pain,( and you MOM & Dad, as well.)

Hang in there, and keep fighting, and know there are all of us wishing the best, and near you in spirit.

Peace,
Catherine

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