The Good Week

Happy Thanksgiving!  We are at Fern and Bob's and he is doing most of the cooking!  It feels a bit weird not to be cooking the whole meal, but it's nice!

Wayne had chemo this week that isn't hard on him.  It seems like every week he has Avastin he gets really tired and sick and then by the time the alternate week comes around he is well again.  He is clearer as well.  His verbal memory has improved and he is having less trouble with naming.  I am really happy about that.  The doctor said that he thought Wayne looked better than he had for several weeks.  When we asked him about the naming problems and verbal memory, he told us that the primary tumor is located in that part of the brain--the frontal lobe, which is the part of his brain that his seizures come from.  He thinks that the Avasitin is doing its job and that the tumors might be shrinking.  That would be so wonderful.  And even his balance is good today.

He has Avastin next week and then he skips a week and the next week he has it again.  And after that treatment, he will have a repeat MRI and lung CT to see where they stand, and we are praying that they will have shrunk.  It's a waiting game and while its hard to wait, we don't have a choice.  But let's all think positive thoughts for him. 

Thanks for reading this and supporting Wayne and me.  Barb

Short Post

Hi,

I'm just sending a short post out so that you will know that I wrote a comment several days ago and it hasn't shown up here so I am guessing some others of you have written posts you haven't been able to get up.  Wayne has the flu, even though he got a flu shot, and he's been in bed for four days.  He's up a bit today and even ate several bowls of Bob's soup.  But he's not feeling great.  I don't know if they will let him have chemo tomorrow as scheduled.  I think we will have to wait until we get there to see.  Hopefully he will be better and his blood work all acceptable.  I'll write more later in the week.

Chemo Again

Wayne just finished the first month of his new chemo regimen and the doctor told us that his chext xray appears to show the cancer is shrinking in his lung.  Not very much yet, and he was comparing it to the PET scan, but it's the best news we have heard  yet.  He will finish eight rounds of chemo and then we will get a new MRI of his brain and a CT of the lung for comparison.  If the chemo is working then Wayne will continue on with it.  If not, then we will try something different and I will be pushing hard to get him into the tumor study or any other study that might be helpful.  But Dr. Nicholes seemed like he thought this regimen is working, so I am choosing to be optimistic about it.

Meanwhile, Wayne is finding chemo to be pretty draining.  He has very little energy.  He also has increased pain in his legs.  Apparently there is a nerve in the chest that goes to the legs and the doctor thinks that is what is causing the pain, more so than the brain tumors.  He said sometimes anti inflammatory meds work better, so he put him on indocin, which turned out to be very expensive.  Medicaid has not yet come through yet so we are having to pay for everything out of pocket.  Last week it was super expensive mouthwash, this week he upped the amount of oxycodone Wayne is taking along with adding in the indocine.  The pharmacy bill yesterday was $98, and I know we have to pick up several of mine still and there may be new ones again this afternoon after seeing the neurologist.

Wayne is also getting a bit depressed.  I can't imagine why!!  However, it's better for him to not be depressed because he can fight harder that way.  We talked to the social worker yesterday and she gave him a short questionnaire that can suggest depression, which it did.  She talked to the oncologist about it, but because most antidepressants cause a lowering of the seizure threshold, he wants the neurologist to add a medication if possible.  Wayne agreed to go to some support groups as well, as soon as we get moved down here in Missoula.  

We are hoping that we can get moved in over Thanksgiving weekend.  I think they are just waiting for the last of the paperwork to come through.  We have loved being at Fern and Bob's, but it is really time for us to have our own place.  It will sure make all things medical much easier.  I'm not sure if we will be able to move our things from Wenatchee that weekend.  We may need to wait until the 9th or 10th because Amanda is coming on the second and she wants to see Montana!  Wayne's sisters can set us up to start with, so that is what we may do.

Thanks for all your prayers and love.  I think Wayne could use some extra encouragement.  I know he'd love to get phone calls or cards.  I read him these comments, but I think that he may need a more personal touch.  He's been sleeping a lot, and while I know that the cancer can make him tired, I think some of the sleeping is because he's depressed.  If there is anyone out there who might like to help us move Thanksgiving weekend, let me know.  If not, we can wait.  Lots of love to all of you, from both of us!

Chemo Day

Today Wayne had his third chemo since we have been in Montana.  He went into it really tired.  Last week's chemo really wiped him out.  Even though the Avastin is not a chemo drug but rather an antibody that attempts to disrupt the flow of oxygen to the tumors via the red blood cells, it still kicked him in the butt more than just the taxal and carboplatin.  (See Barbara rolling around those big cancer words!!)  Anyway, then when he saw the neurologist last week, he wanted Wayne to try to decrease his decadron, which is the steroid he has to take to keep his brain from swelling too much, thus causing even more problems with his balance.  So he tried.  He went from twelve mgs a day to eight.  And the balance problem came back.  With a vengence.

Yesterday morning he fell three times and one of those times he got hurt.  He told me it was just his legs, but then tonight he rolled over on his hip and groaned and I found out that he hurt his hip and arm too.  He has seemed to me to be in more pain recently, and that is interesting because Fern commented to Mandy that she thinks he's in a lot of pain too.  Mandy and I realized in talking about him that he often only takes pain meds when I ask him if he needs them.  She noticed that even last summer.  I guess I will get Fern to help me in asking him about his pain, at least until we move.  And I will try to be more diligent about asking him more often.  When I told the doctor today that Wayne's pain is getting worse and that it is in his legs, he checked the MRI results and there is one or more brain lesions that are big enough to cause that.  He is not having any chest pain or even headaches.  I am glad for that.

Meanwhile back at today's appointment we discovered that he has lost three pounds.  This in and of itself is not a bad thing.  He weighed 171 at his chemo appointment last week, so he is still 168, the most he has ever weighed.  So I am not concerned so much that he has no room to lose like I would normally be the case, but I am worried because he isn't getting enough nutrients.  He is still drinking ensure and we'll buy it for him when he runs out.  But he has lost his appetite.  Tonight I asked him to come with me to get dinner and he said he didn't want any. And he didn't feel like going anywhere either, so I went to Wendy's and brought him a junior hamburger and a large frosty, and he ate the ice cream but not the hamburger. He slept through chemo, slept when I went to my own doctor's appointment late this afternoon, and went to sleep at 8:30 tonight.  He is exhausted. 

He is having other symptoms too.  I made him some salt water to use for his mouth sores, but for some reason he keeps throwing it out.  Today I got a prescription for some stuff called, "Mary's magic mouthwash," that cost $40.00 for a 12 ounce bottle.  In addition to his sore mouth, Wayne's voice is getting really hoarse.  One possible cause is thrush.  The doctor gave him five diflucan to try.  (John, that's the pill for yeast infections.)  He didn't see any thrush, but we hope that is what it is.  The alternative is a tumor in his throat or esophagus.   I am also fairly certain that he is depressed.  He is irritable (particularly with me, which I do understand and try hard not to let bother me),   He isn't talking much to me or to anyone.  He seems to have lost interest in most things but part of that may be the great energy drain of chemo, the steroids or even the cancer itself.  He enjoys sitting out on Fern's deck, listening to music.  In fact, listening to music is about all he wants to do.  We are first in line for a ground floor apartment where Wayne's niece Alisa lives, and he is looking forward to setting up one bedroom as a quilting room.  I hope he will be able to do his quilting.

I'm sorry I haven't written a new post for a while.  I did actually get one all written and then accidentally deleted it.  I was sick for several days as well, but I will try to do better from here on out.  Please keep up your prayers. We want a miracle!