Money vursus Avastin

Money is the big motivator, and without it we don't get far.  Apparently without medicaid we don't get Avastin, you know, the drug that is shrinking the tumors.  Therefore, Wayne and I have filed for divorce so that he can get  SSI and his medicaid.  It's crappy and I am mourning my 25th wedding anniversary that is coming in a year and a half, but we didn't have a choice.  I HATE this.  I got married because I believe in marriage and I want to stay married, but we moved to the poorest state in the west.  Sure wish we;d known that!  So while we wait for the medicaid, no avastin and I hope it doesn't cost him too badly,  I am heartbroken and Wayne is pissed. 

I know this is only on paper.  But that doesn't make it right\.  Any system that tears families apart when they need to be together is a crappy system.  I don;t care if you;re a democrat or a republican, this is a bipartisan issue.  We need solid health care for ALL.  Not just the all who can pay for it.  That goes against what our country is founded on: "All men are created equal."  If we were all equal, then why will some people die because of substandard health care and others get the very best?  Think hard about this.  My husband;s life is at stake.

Getting Smaller

Our computer is down so I am using the one at the doctor's office while I wait for an rx.  Wayne's tumors have all reduced 50% in mass.  This is the best Christmas present I could ever have asked for!

He has been in the hospital but is going home today, and we have free home care servicess doing PT, OT, social work and skilled nursing, just to be sure we have everything straight.

We have moved into our apartment.  Thanks go our to Bob and Fern, who packed us up and moved us and Glenda who is also moving things in for us.  It's great to have our own space, but we sure appreciated living with Fern and Bob for all that time.

Well, I hope they are about done.  This is my happiest update yet!

Oxygen Helps!

Wayne has had a very rough last few days, and this morning we found out why.  He was low in red blood cells, the ones that carry oxygen into your bloodstream.  The doctor suggested blood and what he got was packed red blood cells.  And what a difference--almost night and day.  

Wayne hasn't been eating much either.  Yesterday he ate a bowl of cereal, about 1/3 of a junior cheeseburger from Wendy's, and a few bites of white rice and chicken.  Total amount of food for the day was less than a cup full.  He didn't eat any breakfast this morning, but once they started the IV he had a cookie.  And then another.  And he decided to go out to dinner. We went to I-Hop and he ate!  Not all of it, but more than he's eaten in a while.  And the doctor gave him some female hormones, that are supposed to increase appetite!  As long as he doesn't start looking like a girl!!

He's also been having some problems with cognition.  He's been confused about things off and on and this morning after he put on his clean clothes, he started to put his dirty ones on, on top of the clean ones.  Not enough O2 in the brain causes hypoxia.  I have had hypoxia.  It's not fun.  Your memory sucks.  You know that you aren't operating at optimum level.  And it's hard: it hurts your pride as much as your cognition.  After getting the blood, that has improved drastically.  And while I can't say the old Wayne is back, he is certainly better.

He gets to take a week off from chemo next week.  Then in two weeks, he will get another chest x-ray.  I think that we will see how that compares before making any changes.  However, we both felt that the doctor was hinting around today that the brain tumors are still there in full force.  That's not what we want, obviously.  We are still hopeful, but being realistic as well.  So please keep up those prayers.  We are still hoping for a miracle.

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!

Side efects

This will be short, but I just wanted to let everyone know that it is day 4, post chemo, and Wayne is feeling good. He is doing great! No nausea, no balance issues, no problems. Days 3 and 4 are ususally the worst, so I am really hoping he is going to have no side effects this time. He migbt next week though, after he receives the avstin for the first time. But with luck, things will go smooothly that time tim too.

Wayne has had more energy this week that he's had in a long time. He is able to do some easy chores again and that makes him quite happy. It is so hard to have everyone doing everything for you. I know this. Hi is able to bath without assistance, and that is a biggie. It's pretty hard to hae to ask for help in that area. I have had to experience it, and now so has Wayne. He is getting up and down the stairs to bring me things so I can cook and he is neither winded nor unbalanced, and he is so hapopy about it! He takes out the garbage and makes cleaning the kitchen easier for me. He isn't quite back to his old self, but he is much better than when we were in Wenatchee. He loves sitting outside listening to music, looking out over tyhe mountains. It's such a gorgeous view, and he feels well enough to enjoy it. I think he was getting depressed in that awful motel room, but he isn't depressed now.

And he is making two packs of cigerettes last a whole week. I think one of these days he is going to just suprise me and quit. I am doing my very best not to harp on him about it while still encouraging him to do it. It's a fine line as anyone who has smoked and tried to quit would understand. He wants to quit, but it's a crutch that helps him deal with things, so quitting is really hard.

Thanks for all those prayers! Please keep them coming!

Chemo, MIssoula Style

I'm sorry I haven't updated the blog as often as I'd have liked. We went to Missoula Monday for Wayne's first appointment with the new oncologist, and we like him. In talking to him though, I realized that Dr. Tucker, who we liked, changed Wayne from a cure path to a palliative one without letting us know that was what he was doing. He was talking about chemo going over the blood brain barrier and encouraging us to wait and see if it worked.

Well, it didn't. Wayne's lung tumor is a centimeter bigger. And there is no change in the brain MRI. The brain tumors are smaller, due to radiation, not chemo, but they are not a lot smaller. The original chemo Dr tucker was going to use was carboplatin and taxel. But when Wayne was not going to be able to have radiation to his lungs because of his advanced emphazema, he changed his mind about using taxel.

The new doctor, who we went with based on Fern saying she though he would fight harder, changed Wayne to taxel and has also changed around the way things are given. Wayne has been getting chemo every three weeks, and for two of those weeks, he was knocked on his butt afterward, but Dr. Nickles said that's not necessary and the results won't chage a bit whether Wayne gets smaller doses every week or if he gets big doses every three weeks. So He will be getting chemo every week from here on out. Every other week, they will also add in avastin, which is fairly strong and even in small amounts can only be given once every other week. He said these have a better chance of crossing that barrier as well as helping with the chest tumor.

We were all so worried about Wayne's brain, that we forgot about the lung. But this is lung cancer, not brain cancer, and so we have to treat it that way. We're really hoping that this new protocol will work. The odds aren't great--Ive seen the numbers--but for every person who has not beaten the odds, I can name two or three who have.

It is time to try alternatives and look at Tampa. We have had a number of products suggested for Waybe's use. The only problem is that I don't have the money to buy any of them. So while I am looking up alternative treatments, I am also looking for funding. In watching tv we learned that several types of lung csncer can be caused by working with asbestos. Wayne worked with it in the Navy, so I am absolutely pursuing that. I don't need the millions promised in the ads, but enough to try everything we want to try. I don't care how we do it: I just want my husband well.

He is also going to be having a second opinion about the changing of his epilepsy drugs and whether or not they might be able to operate on the brain tumors or even do more localized radiation. We were told that last wouldn't be an option, but new people have new ideas and we are sure open to anything that might help.

Still, when I was reading through sll the documents yesterday, I noticed that even Dr. Nickles had written palliative in the expected outcome box and I have to say that gave me pause. We have been told repeatedly that the objective is palliative--in other words, it's treatment that should help the symptoms and may prolong his life, but won't cure him. But I keep putting that out of my head. Seeing it in print really bothered me far more than I thought it would.

NOw, more than ever, I want to be home with him. However, I just got notice that I am about out of unemployment. I think I have at least one more extension coming, but this is not the time for me to have to be out working. I am going to work hard to try to get my book contract for the Korean experience essays that I have been encourgaged to try to publish. Oregon State University Press seems interested, but I have my doubts that I will earn enough to live off a book published there. I may send it around several places. I am also finally writing the book I have promised myself I would write about Wayne since he had his epilepsy surgery in 1990. Still, I don't know if I will be able to get a contract for that one any time soon. This is not the time for me to be away from him. Is is wrong that I want to squeeze out every second that we have together? We don't have to be talking or interacting. I just want to be near him. I wouldn't mind working from home if I coulod find something legitimate. And maybe it will be those books. So while you're all praying for Wayne, please say a little prayer for me that I can find a way to earn a living but still be able to stay home with my husband.

Enough morbidity for the night. Fern is have surgery tomorrow morning so I will stop here so that I can be up and at the hospital tomorrow. I ordered us some good chick flicks for when she is home recuperating. I will try to do better about getting these posts made. I have my computer and the right adapters to use Fern's dsl but I need to talk to the server to configure it. Once that's done, it will be a lot easier for me to do updates.

Going to the Hospital, again

Wayne spent the night in the hospital last night because he was having trouble with balance. He didn't have any. Even with the walker to support him and me to support the walker, he fell, so I called the oncologist's office and they said to have him evaluated.

The same PA who took care of me took care of Wayne too, and we really liked him. He checked for electolite levels and discovered that his sodium and maagnseum levels were low, so after a night of getting them IV and some steroids as well, he is once again home and happy! They forgot to give him his nicotine patch last night, and he was really, really ready to leave.

So that begs the question: will he manage to quit or not. I am betting on not and doing my absolute best not to bug him about it, but it's hard when the doctor tells him that his treatment will work better if he stops smoking. His first stop at home?? The deck of course and a cigerette.

I am very encouraged by the way he came back so fast. He didn't the two previous times. And I have a very tentive reading of a brain CT. There appear to be three tumors. Now having said that, I will also tell you that it's harder to differenciate with tumors with a CT than an MRI. However, he started with four tumors and two lesions, so this might be good news. But it's still to soon to know. He will get another MRI in two weeks and then we will go from there.

Thanks again for all your prayers and love. I have been reading "Chicken Soup for the Survivor's Soul" and it's amazing how many people have come back from something like he has and are alive years later to tell the tale.

We're Here

Good afternoon to everyone. I am writingthis on Fern's cmputer instead of mine because I haven't found the cord to plug mine into and she doesn't have wifi. Typing on it is an interesting experience because it doesn't feel anything like mine.

The move went very smoothly I thought. I was able to do more than I had thought I could, so there was no lying around watching others work for me. Just for Wayne. He went with them to the storage unit and he had fun I think. Unfortunetly they were unable to find some of the things we really wanted here, but we will go back in a few weeks and get the rest,

We got here so late last night. Ray had been on the road since five and I imagine Fern and Bob were on the road by six. It was very quick trip. Glenda came with Ray, so you can imagine how tired they all must have been when we finally got here.

Wayne and I started out traveling together but at our first stopping point. which was Moses Lake, WAyne and Glenda traded, and she drove me in our car and Wayne went with Ray in his brand new uber comfortable car. He had a great time talking to Ray and spending time with him, and I enjoyed both the treat of being driven and the company. By the end of the drive, Glenda was finishing my sentences with the exact wording I was formulating in my mind.

This moring everything was unloaded. I told them to wake me up, but there are some readers out there who know that waking me up can be a real challenge. Wayne tried, but not very hard. So I got out of unloading. I will unpack a bit, but I want the move to Miaaoula to be easier.

Today, Donna shows how well she knows her brother. He our on the deck, enjoying the gorgous scenery. Please excuse my typos and spelling errors. My computer screen for them. but tis one isn't. Oh well.

Oh and mone more thing: our cells don't seem to ber working here. I will send Fern's mumber via email.

Fern's house

We are here at Fern's. We made it. Wayne had a wonderful tim chatting with his nephew Ray, and he got to ride in the comfy new car that
Ray has. He did beutifully! More tomorrow!

Moving Day

Thanks to Donna, Karen, John and Denise, and Carol for your love and support. Today is the day. Fern should be here shortly. I am not packed up because we spent all day the past two days doing errands. Wayne is now napping because my bi-pap machine mask was leaking and the buzzer on it kept going off. (I have complex sleep apnea) He wanted me to get enough rest and didn't take the mask off, just shut off the buzzer, so I am well rested, but he is not. He is trying to sleep while we wait for Fern and Bob and Glenda and Ray. I am glad they're late. It gives me more time to get ready, but now I must go and do that!

But first, Wayne had a day where his balance was as good as it was when we moved down to Leavenworth from Lake Wenatchee. It was just one day, and he had had enough sleep and wasn't tired, but one day like that gives me hope that maybe those tumors in his brain are shrinking. I am anticipating getting more of those days. The doctor said that Wayne should have an MRI in two and a half weeks, and if the tumors are responding then he should continue. If not, then we should look into the tumor vaccine that I wrote about. But I have this feeling that the chemo is working. Keep those prayers and positive energy coming. A friend who sees and auras says that she still sees him as hanging in there and thinks he is nowhere near ready to go anywhere. I choose to believe she is absolutely right! All our prayers are being answered. I just know it.

Gotta go. Fern and Bob just called. They're here!

Eating Jager-schnitzel

Yesterday my cousin, Tom, and his wife, Mary, came over from the Seattle area to spend the weekend with us. They were able to get a room at the same hotel where we are staying. And after a short, light picnic in Riverfront Park, we headed into Leavenworth.

Leavenworth is a tourist town, a Bavarian themed village that survives on tourism. One of the things they do is have festivals. They mirror all the festivals in Germany. This weekend was Oktoberfest, and town was crowded with young people who had obviously been drinking a bit of the imported German beer. Tom wanted a beer and Mary wanted Jager-schnitzel. Well all four of us wanted it.

Wayne worked at Die Musik Box for a long time, and the owners also own one of the best German Restaurants and beer gardens in town. Wayne used to eat lunch there every day because at worst he had to pay the discounted employee price for lunch, and frequently, they bought him lunch. Even though he doesn't work there any more, they still really like him as late as week before last, they bought him lunch!

So we sent Wayne in to see if he would be able to get us in more quickly. Also, another of my cousin's, Tom's sister, Sandy and her husband, Del, were going to meet us in Leavenworth. So we needed a table for six. The hallway going in was full, but Wayne got us that table, with no waiting, and as good a server as I have ever seen.

We all ordered Jager-schnitzel, which is a pork cutlet pan fried with Jager sauce. Jager sauce is made from bacon, beef stock, red wine, mushrooms, and onions. And it is really yummy. It comes with sweet and source spiced red cabbage--so good it's almost like eating dessert--and spatzle, little pasta type dumplings that are simmered in water and then sauteed. It's wonderful! And we don't eat it very often for obvious reasons! Tom and Mary drank beer, I had a coffee drink with chocolate wine, and Wayne stuck with black tea--good for cancer patients.

We had a great time visiting and then later walking around the downtown area of Leavenworth, watching all the inebriated individuals trying to walk around. We had a blast, and other than the fact that he had a walker with him, Wayne looked like himself. It was great to take a night out and not worry about his cancer, but just go and have a good time. And Tom made Wayne some chocolate chip cookies. We need more days like yesterday!

Tonight we are having dinner with some friends we haven't seen in a long time, so that should be fun. Wayne slept most of this afternoon, so he should be good to go for a couple hours tonight. Getting out and doing things is a lot of fun when he is able, but it does wear him out. Still, we are trying to get together with all our friends before we leave so we can say good-bye.

The plan at this time, I believe, is that Fern and someone else will come on Friday night and we will load up and go on Saturday. However, Fern is working on the logistics of this move and we can probably go any time after his chemo. He may have a couple of bad days if the tegretal interacts with the chemo again, but at least I know what we should do, and we'll be at Fern's and she will know what to do.

Anyway, Montana here we come!

Moving, Part 2

Having announced we have decided to move to Fern's until we can find a place in Missoula, we realized that we need to wait until next weekend. Wayne has chemo again next Friday, the 8th, so we checked with the doctor and decided it is best to wait that week.

He is also going to be titrating down on his tegretal, the epilepsy medicine that he has taken for years and years because it interferes with the chemo. They are wanting to do that over just one week, and so they may need to hospitalize him to safely do that. We asked the neurologist here to talk with Dr. Wilinski, the neurologist Wayne has seen for years and years at the Epilepsy Center at Harborview in Seattle. I am not sure she has talked to him and we haven't heard about when to start the taper. Theoretically, if he has enough of the new medication in his system, then it should go smoothly, but with Wayne and his epilepsy, it is never smooth, nor easy, nor textbook. The doctors always say he is really fragile with his epilepsy, meaning not that he is weak and fragile and hurts easily, just that he has seizures easily and they seem to be set off easily. I am nervous about this new med, especially because we will be so far away from Seattle. And given Wayne's cancer and all the side effects he already has from the radiation and chemo--not to mention the illness itself--I would rather he didn't have a seizure.

I am a bit concerned as well about him going off too quickly and going into status--which is having one seizure immediately following another or seizing for longer than a minute or two at a time. He has a history of this. When he was in the hospital following the first brain surgery they did so they could map out his brain, they needed him to have a seizure, so they put him on an exercise bike and lowered his tegretal and instead of getting one seizure, he had multiple seizures. And those seizures left him with Todd's paralysis--he couldn't feel the inside of his mouth so he was unable to speak clearly. (He also couldn't feel his food and the first morning he had it, he was eating sausage links for breakfast, and they stayed in his cheeks, until his cheeks puffed up like a chipmunk. Donna and Arlen came to visit that day so they may remember, and I think Karen was still there as well. I know that Mandy and I had been asleep because the status started in the middle of the night, but she woke up and got the nurses--and she was only seven. After that I don't think she went back to sleep at all. In all, he had 17 grand mal or partial grand mal seizures within a 12 hour framework. I am going to ask the neurologist here for a prescription for injectable Valium or ativan so that if he should go into status, we will have a way to get him out. It is a very scary thing for me, and I am hardly fazed by his seizures any longer. I just take them in stride.

On another note, I was able to talk with a retired oncologist about Wayne. He volunteers at a local agency called Wellness Place, a place of resources for people with cancer. They have books to borrow and free hats or scarves. They provide Ensure nutritional supplements free--two cases a month. They have all kinds of programs, including matching patients or family members with mentors, who can help process a lot of the information that we get. I told him how tired Wayne is, and he told me that decadron, the steroid he takes to keep his brain swelling under control, can cause him to be tired. As well, apparently tumors themselves cause tiredness. Top that with chemo that he started a week earlier than originally planned and the whole-brain radiation and it's no wonder he is so tired. It was great for me to have that explained so well. I know I have talked about his tiredness before, but this really made me understand. He is his usual cheery self though. He smiles and laughs, makes jokes and talks about growing old. He is positive all the time. And he never, ever, complains. I'm not sure how he does this, but I really admire his ability to do so.

We are really excited to get out of this dreadful motel. Wayne is looking forward to having a place to work on his quilting, and I am looking forward to practicing my cake decorating again. And we are both looking forward to getting to Montana and getting settled in a place of our own.

Tumor vaccine

When we get 12 posted comments on one entry, it tells me that I need to write a new entry. We are still in Wenatchee, wishing we had an apartment in Missoula. Glenda is trying, and the complex we'd like to go into has a waiting list for ground floor apartments. We are going stir crazy here. There is very little room so it's hard to find anything to do other than be on the computer, watch TV, read or listen to music. Wayne really needs to have a place to work on his quilts. He hasn't done anything on them in months.

I don't know if I ever mentioned the tumor vaccine that I read about. My cousin, Marrisha, spotted the article on CNN. It was about a man who had inoperable brain tumors and who underwent a procedure that worked. The doctor went in and took a piece of the tumor. Then he used it to make a vaccine for that specific type of cancer, re-injected it, and a year and a half later, the man had no tumors in his brain.

So I wrote to the doctor, hoping that he might still be doing that trial and that Wayne might be eligible. The doctor is in San Fransisco, and we both have family in the area. The doctor wrote back and said he'd have his assistant triage us, but what we got was a list of trials going on. There is a trial for the vaccine and it is specifically for patients with metastatic, non small cell, adneo carcinoma lung cancer, which had spread to the brain. Bingo! That's Wayne. However, the study is in Tampa Florida, so we are not sure we can do that, even if he were accepted.
But I am going to write to them anyway, and see what we can do. If it's meant to be, the way will show itself.

Meanwhile, Wayne is doing okay. He tires really easily and spends a great deal of time lying down, listening to music on his MP3 player. Boy what that the best investment I ever made! He has a lot of songs on it, and it saves him from being totally bored. The tiredness is called cancer fatigue. It stems from the disease as well as the treatment. Our friend Denise went through it when she had chemo two years ago. She said that it was horrible because she couldn't really sleep, but she was so tired all she could do was lie there. She wasn't able to watch TV or movies because she couldn't concentrate well enough to follow along. This seems to be true for Wayne as well. He either sits outside and watches cars go by or he is lying down listening to music. And sometimes he falls asleep. But you don't have to concentrate when you listen to music, so it really is the thing that makes it easier for Wayne.

For Denise, the tiredness hit following each chemo treatment, but for Wayne, it seems to have hit following his radiation. He did great all through it, but afterward he has been really tired. Also, I think they started the chemo two weeks earlier than originally planned because his tumors hadn't shrunk much. So he didn't really get that recovery time he needed in between. But he doesn't complain. He just accepts what is happening and uses his energy to be positive and fight.

He is up for finding out more about the vaccine trial in Tampa. I will write more about it when I hear back from them. Meanwhile, thanks to everyone for your prayers love and comments. Keep them coming. Wayne really loves hearing all of them.

New MRI

Because Wayne was having problems with balance again, and feeling weak on the left side as well as being dizzy, he went into the hospital yesterday.  They decided to get an MRI again today to see what's going on, and without the radiologist's read, the neurologist thought it looked good, and that a couple of the tumors had decreased in size a bit.  Who Hoo!  His balance is back to his new normal.

However, they think that this may have been caused by the chemo and how it interacts with Wayne's other medicines, particularly tegretal, which is his tried and true epilepsy med.  But it interferes with so many other medicines that they really want to change his med.  I called the epilepsy specialist who Wayne sees in Seattle, Dr. Wilinksi, and he said to go ahead and make the change.  They are going to keep Wayne in the hospital tonight and tomorrow to see how he reacts to the new med and then release him if he is doing well.  They will taper his tegretal down and we'll have to watch for seizures.  But if the new med works as well as tegretal, the we will be really happy because it doesn't really react much with any other meds.  I will know more tomorrow, including the official MRI report and then we will go from there. I'll put us another post when I have more to report.

(In the meantime, Glenda is looking for an oncologist in Missoula and trying to find temporary housing while we wait for an apartment,  We'd rather go to Montana sooner than later.)

Back in the Hospital

Wayne did really well with his chemo--we thought.  They told him that carboplantin had the nasty habit of hitting people with nausea on the second and third days, but Wayne only had mild problems that were totally controlled by his compazine.  So we thought he was going to do very well.

Then he woke up this morning and he was dizzy and off balance again.  I called the on-call oncologist, and after discussing everything, including our living quarters, she suggested coming in to the hospital.  So we packed him up, and went to the ER to be admitted.  But first the ER doctor ran a number of tests, including a CT of the brain.  She said she was looking for fluid buildup.  We don't know what is causing this because she couldn't tell from the CT, but it could just be a side effect of the chemo.  Maybe we'll know more tomorrow when Dr, Tucker comes along.

What we do know is that we have to get out of that motel room we're living in.  It's terrible.  There is just no room to move in it.  So we are considering going to Montana this week.  Fern offered for us to stay with her, but with the health issues Wayne has, I think we need to be in Missoula.  Glenda thinks that she might be able to get us a better price at the hotel where she works and if so, that would be perfect. It will likely be easier to find a place to live if we're already there.  So we will see if we can work out the logistics, find an oncologist over there, and make an appointment for our first day there, so that if an emergency comes up, he has a doctor already, and get moved.  We can come back for the rest of our stuff.

But back to the hospital.  Wayne is in Wenatchee Valley Medical Center Hospital this time rather than Central WA, and while the people at Central were really nice, this hospital is new and extremely nice.  They have all new equipment and chairs and I will not get stuck sleeping on a broken down cot.  They brought me a sleep chair right away.  I'm tired and probably will be out early tonight--and thus up early tomorrow.  I will keep everyone updated the best I can.

First Chemo

Because we decided to move to Montana, and because the radiation didn't work as well as we expected or had thought after seeing the PET scan, Dr. Tucker decided to start chemo two weeks earlier than planned.  Before I go in to that, I need to clear up the confusion about the PET scan results.  Thanks to Fern for asking the right questions!!!  I did not explain the new MRI results with any discussion of the PET results that didn't show tumors.  Apparently PET scans don't always show what is really going on in the brain.  Because Wayne was having more balance issues as he tapered down on the steroid that was keeping his brain from swelling, the doctor ordered another MRI.  It showed that the tumors may have gone down just a bit, but the swelling was worse,  So he went back up to the higher dose of steroids and got going quickly on the chemo, which is now the only chance we have of shrinking both the brain and the lung tumors: because Wayne had whole brain radiation, he cannot have additional radiation to his brain because it would cause too much damage,

  

So after getting the port in on Thursday, Friday morning Wayne started chemo.  He was nervous and didn't sleep too well the night before.  I sure understand that; I didn't sleep too well either.  But the best part was that Donna and Arlen (Wayne's sister and brother-in-law) came over for it.  They sent a couple emails wondering if they should come at all and then sent another saying they had to come, both for us and for themselves, I am so glad they did.  They were there at the hospital waiting for us, and we all went back to the chemo room together.  I can't tell you how happy Wayne was to see them.  Having family around is a real blessing.

First they did his prechemo labs, and then started the nausea meds. They went in really fast, and then he had to wait half an hour to get the other two.  The newer one went first and was given "IV push" style, which only took ten minutes. Then the carboplantin, which took 45 minutes.  We were out of there in just over two hours and Wayne felt great.  They sent him home with compazene for nausea, and he didn't have to take one until late afternoon.  The chemo didn't affect his appetite.  He had a pretty good sized breakfast right afterward--all of his large breakfast and some of mine.  Then he was ready to rest.

We headed back to the motel, got Donna and Arlen a room and Donna and I went to the store to buy ingredients for galbi, pa jeon, and wasabi napa cabbage salad. (This is a Korean barbecue that everyone I have ever fed it to has loved.)  When I decided to try making this dinner in the minuscule kitchen I have here all I really considered was that I could fry it rather than barbecuing it.  However, I didn't consider the work that goes into it and the fact that I have no counter space or anything to cut veggies on.  Still, I did make it work.  Donna was helping me do various things, and we were talking about cooking in tight quarters, so I told her the story of our second Thanksgiving in Korea.

First, Korean apartments don't come with ovens.  You get a two burner gas stove and that's it.  Most westerners buy toaster ovens and we were no exception.  We had to work on Thursday of course, but that Saturday I made dinner.  Our friend, Kelly, who was working in Seoul, went to a foreign market there and got us an 11 pound turkey.  On Friday night she carried that thing all the way down to Daejeon on the bus along with all the things she needed to the weekend. We thawed it in the sink with cold running water and in the morning I made stuffing,  ( I took all my spices with me to Korea because I knew from the previous time that there were a lot I would not be able to buy there.)  Then I borrowed toaster ovens and set up a second table.  I cut that turkey into five pieces, put some stuffing with each one and wrapped them all up in tin foil.  Then I put them in the toaster ovens.  Here at home you can probably set a toaster over for up to an hour or more, but all the ones I borrowed had to be reset every fifteen minutes and mine only made it thirty minutes.  I called it the Dance of the Toaster Ovens.  At any rate, I managed to cook the whole turkey and make the entire dinner, pumpkin pie included, and then we had about ten people in our little 500 square feet apartment eating it.  It was a blast, but it taught me that we can do a lot with a little.

So making galbi in this kitchen wasn't nearly as hard as I may have thought although since our table is covered with groceries we took it all over to Donna and Arlen's room to eat.  Wayne seemed to really enjoy it as did Donna and Arlen.  I even got out the go goo jeong, that Korean red pepper paste, and Arlen really liked that.  Wayne made it through the night  without any significant nausea, and he is taking the compazene on schedule in order to stay ahead of it.  The nurse did tell us that the carboplantin has a nasty reputation for hitting hard on days two or three with nausea, but so far today he is doing okay.  He'll have one more round of this in three weeks and then another  CT and MRI to be sure this is the right chemo.  

Oh, and the financial worker at Wenatchee Valley Medical Center called while we were there, and told us that Wayne has finally been approved for Medicaid!  Yeah!  What  relief that is.  While we can get some of his meds from the VA, we have been paying for all the rest.  I think that we will be getting some money back from the pharmacy here.  He's been approved back to May first.  They are still working on mine, but I can't imagine that they wouldn't approve it.  What a relief.

Wayne still has a wonderfully positive attitude and has been joking about the things we'll be doing when we're ninety!  If anyone can get through this he can.  So keep those prayers and spiritual work coming.  We want him to win the war!

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Port-a-cath

Just a quick update to say that Wayne had his port-a-cath, an under-the-skin port for use with his chemo, implanted surgically today.  The procedure was short--twenty minutes, and he didn't even spend much time in recovery.  The worst part was that although they wouldn't let him eat after midnight last night or drink anything after 11 am today, they didn't get him into surgery until after four!  He spent more time in the admitting room than he did in surgery and recovery combined! By the time the doctor took me back to recovery, Wayne was sitting up wide awake drinking apple juice and asking for food, which they promptly brought.  He made short work of two packages of pudding, one apple sauce, one jello and a plate full of various crackers.  Then we left, stopped at the store and bought him a new pair of jeans because he has outgrown all his old ones, and went out to eat, where he ate a hot turkey sandwich with potato soup and mashed potatoes and gravy.

All that food is getting to him. His belly is still growing and his face is rounded.  He looks great to me, and he is gaining fast.  As of today, he weighs 156 and is in the biggest sized pants he's ever been in.  And he just came in from outside and now is eating chocolate pudding out of the bowl he made it in.  He is really enjoying his food, and I am really glad.  I hope that continues after he starts chemo.

Yesterday we went to Leavenworth because I had an appointment with my doctor.  He lost his first wife to cancer the year after the Sorenson family reunion.  They were our next door neighbors, and I remember how quickly she went downhill.  When we talked about Wayne, I told him I knew he knew how I was feeling.  He told me that there would be bad days, but that there would be great days, that will become cherished memories.  With that in mind, after my appointment, we decided to play tourist and check out all the new shops downtown.  We had a great time, and we ate our way from one end of Front Street to the other.  We got cream filled cream puffs at the Danish bakery, ice cream at Bearly Perfect, and taffy from the taffy store.  And while I was at the doctor's, Wayne was enjoying a free meal at King Ludwig's.  Then we went for Chinese (hoping to recreate our memories of eating Chinese delivery in Korea.  It didn't work, but we had a great time anyway.)  We had a great time and although he may have said good bye to friends who work downtown, we didn't dwell on that at all.  And we also got a couple of angels: a guardian angel lapel pin for Wayne, a courage angel lapel pin for me, and and angel of hope worry stone to share.  Our day yesterday is a memory I will cherish, regardless of the outcome of his cancer.

Tomorrow morning, he starts chemo.  He's getting carboplantin, and old but strong drug that works well for his type of lung cancer.  To that Dr. Tucker has added a newer one called pemetrexed.  They give anti-nausea meds before they start the chemo, and although he will lose all the hair on his body, he shouldn't get too sick.  I really hope the doctor is right about that because I think Wayne needs to be able to eat.  Donna and Arlen are coming to be here for his first treatment, and Wayne is excited to see them.  I think that one of the good things that is coming out of his cancer is he is getting to see his family more.

I'll write again tomorrow after chemo, when we find out how well he did with it. 

Talk with the Doctor

Today we went to talk to Dr. Tucker, Wayne's oncologist.  We wanted to discuss the meaning of the results of the MRI as well as tell him that we have decided to move to Missoula for to be near family.  He told us he thought that is a very good idea.  He said the upcoming months could be rough.

However, he is the maverick that we need.  Once again, he was able to give us hope in a situation where other doctors would not.  He told us that he had a patient in Texas who did not respond to the radiation in the brain either.  For that patient, again with the same type of cancer Wayne has, chemo was the answer.  He wasn't able to "cure" her, but he was able to keep her alive for seven years.  He didn't say, but it sounded like she is still alive now.  Can you imagine what seven years could bring?  It could bring a cure.

Dr. Tucker was not as enthusiastic about putting chemo directly into the brain via a port.  He explained that there are some cancers that does work well for: breast cancer, for one, but it doesn't work for lung cancers, and so it wouldn't be an option.  But even though we are told that chemo doesn't go past the brain/blood barrier easily, he said that it absolutely can.  Time, however, is of the essence.  

So he is going to start Wayne's chemo on Friday morning.  Tomorrow we go and talk to the surgeon about getting the port put in, Thursday morning he gets the port in, and Friday morning he gets his first round of chemo.  The idea is that no matter where we are, Wayne should get two rounds of chemo and then have an MRI of his brain and a CT of his lungs.  If the tumors are reducing in size, then they can continue with the same drugs.  However, if not, then they can change the drugs and try something else.  The idea is to find the chemo drugs that his tumors respond best to and then go a full course.

If it works, then likely eventually he may need to repeat it. I think the idea is to keep the tumors under control without beating Wayne up too much.  And Dr. Tucker did say that even at this point some doctors would just offer to keep Wayne comfortable.  But Wayne is a fighter.  We all know that.  I have watched him fight for years.  He had to learn to read and write three times; he had to relearn vocabulary; he had to relearn to converse: he's been through hell with his epilepsy and he always comes out on top, smiling and laughing.  He is not ready to give up or give in, and it's important that we all support that.  Whatever Wayne decides he wants to do, I am right there with him.  If he wanted to go to Timbuktu I'd be ready to go.


But, because of the swelling in his brain, Wayne still has to take the full dosage of his steroid, decadron.  The advantage of this is that he has much better balance than he had for the last couple of months before his cancer was diagnosed.  The additional advantage is that he is eating a lot and gaining weight.  He weighs more now than he ever has, and he looks great. The only downside is that I think he is going to need new pants!  There is no way he will get long johns under his jeans; he is barely getting the jeans on now!  I told him I'd love him just as much fat and bald!!


Again, thanks to everyone who is reading and commenting on the blog--even if the comments are in emails or phone calls.  I am reading every response and email to him.  Your love and concern go a long way toward keeping Wayne's morale up.  He is still laughing and finding the humor in every situation.  And as long as he can do that, he is ahead of the game.

Moving

We have decided to move to Montana. I wish I had better news on the cancer front, but we are being told that at this point the radiation to the brain didn't work, so we are looking at chemo to prolong life rather than cure cancer. Given this news, Wayne decided he'd like to go home. We have talked with a number of people, including our daughter, and the consensus is that moving to Montana is the right thing to do. We discussed where in Montana and have decided that Missoula is the best place. Wayne can get good medical care there, and it might be easier for me to find a job there.

We are talking to Glenda, Wayne's sister, and she is going to help us find a place to live and get us moved over there. He will have two other sisters nearby: Fern in Plains and Carol Ann in Kalispel. He has two nieces and a nephew in Missoula as well, so he will be surrounded by family. I think this is a wonderful thing for him, and I will enjoy getting to know his family better. I have known them all for many years, but never well, so this will give me a new opportunity to connect with them.

And maybe, once he is surrounded by all that love and care, a miracle will happen. There are a few new things for brain tumors on the cancer front. We discovered that they can take a piece of a tumor and use it to make a vaccine for that specific type of cancer. We also learned that it is possible to put a port directly into Wayne's brain to shrink the tumors with chemotherapy. Brain tumors don't usually respond to regular chemo because it doesn't cross the blood/brain barrier every well. So we do have things to check out. Wayne is still up for the fight, and so we will all support him in that fight. Keep praying for a miracle!

New MRI Results

For the past several days, Wayne has been getting more unsteady on his feet again. While he never made it back to mountain goat status, he was pretty stable on his walker and had good strength in both sides of his body. On Wednesday I noticed a bit of a problem and by yesterday, it was obvious that the balance issue was exacerbated.

We went to our chemotherapy "teach" appointment yesterday, and while there let them know about Wayne's balance exacerbation. They were able to get him an MRI very quickly. There had been a cancellation just when the nurse called and he was able to go straight on down. Today we were told that his MRI looks about the same as it did the first time, with a bit more swelling in one area. Obviously I was shocked. I had taken that PET scan that didn't show any tumors to heart. But apparently this isn't necessarily bad news. The radiation can take some time to shrink the tumors and it continues to work for four to five weeks after stopping, so it could still take them down. As well, some might be just shadows so we really don't know anything. But it is frustrating and frightening not to know.

However, Wayne has to increase his decadron, which is the steroid that keeps the swelling down in his brain. This is not a bad thing, but he is still gaining weight and I think that with the steroid back up to the higher dose, he is going to grow out of his clothes! His jeans are really getting tight.

Thank you to everyone who is writing, either here or to my email and to everyone who is praying for Wayne. We appreciate every one of you. Wayne isn't writing emails but I am reading them to him as well as all your comments.

Chemotherapy Versus Radiation

I wish I had great news to report, but I don't. When we talked to Dr. Tucker last week, he said that the best chance for a cure would be doing radiation to Wayne's lung, with low-dose chemo at the same time. However, he was concerned about the condition of Wayne's lungs. He said he'd talk to Dr. Register the radiologist-oncologist and we'd decide on Friday.

On Friday, we went in and Dr. Tucker told us that he had talked to Dr. Register as well as to his mentor, who is a lung cancer specialist. They all agreed that to do the radiation right now would at best cause a great deal of damage to Wayne's lung. Apparently Wayne has advanced emphysema. His lungs have a number of collapsed air sacks. Radiation causes scarring and that will damage the healthy lung tissue that Wayne has left. Because the tumor is so large and there are some lymph nodes in other parts of the lung, they would have to radiate the entire lung. They just can't take that chance because at best Wayne would have to go on oxygen for life and at worst it could kill him now. This was not at all what we wanted to hear.

So what they want to do is a round of a much more aggressive chemotherapy first and see if it will shrunk the tumor enough that they can just radiate one small spot on the lung. As well, they will get another MRI of the brain to be sure the tumors are gone there. If they are, and the lung tumor is smaller, then they will go ahead and do the radiation at that point. So it's going to be a while before we know anything.

The chemo won't start for three weeks because they want Wayne to recuperate some from the radiation. And the effects of the radiation continue for up to four more weeks. Right now he is exhausted much of the time. He has lost interest in most everything and spends most of his time lying down with his mp3 player, listening to music. He sleeps a lot as well. But sometimes he can't sleep. When he is up he likes to just sit and talk. This tiredness is called cancer fatigue, which is a byproduct of radiation or chemotherapy. We expect that it will get worse before it gets better.

Our wonderful friend Denise, who flew out from Missouri to help when Wayne was in the hospital, had colon cancer. She was subjected to six months of aggressive chemo, and she said that it got worse each round. She had hers every two weeks. Wayne will be getting six treatments, each three weeks apart. They give time in between for the body to recover some before the next, so I think that since his is a three week recovery, it is going to be a tough one. As well he is going to have to get a cathaport put in so that the chemo won't burn his veins. That will be put in by a surgeon in a couple weeks.

As for the prognosis, we don't really know yet. It is possible that the chemo will shrink the tumor enough to radiate. And it is possible that the radiation will still get rid of the rest of the tumor. But we don't know for sure. We don't even know if he will get to have the radiation, and without it, there is no chance for a cure.

And although he has agreed to stop smoking, he hasn't yet. He says he is tapering down, but I still think he's smoking a lot. I know how hard it is. I did it 14 years ago, but if he doesn't stop the whole treatment thing will be moot. Nagging doesn't help at all. Rather it makes him want to smoke more. But if anyone has any ideas on ways to help him quit, I am open to hearing them. I can then gently pass them along to him.

We have moved into temporary housing at a hotel that takes people on weekly or monthly rates. We will be trying to find an apartment for the next few weeks and with luck, we can move into one soon. Meanwhile, this isn't the worst living situation. We could have gone to the homeless hotel, where there are degenerates and shared kitchens and TVs and no air conditioning and rooms 8x8! Yikes! This hotel room is better than the studios they gave the teachers in Korea who were single. At least this room has a stove with four burners and an oven!

I had expected to find some dishes to use, but there were none at all, so we went to the Goodwill and found a couple of really pretty plates as well as some other things that we will need. The plates are really Asian looking, square, with light yellow calla lilies and white and black. We are always drawn to Asian looking things. When I got them home and started washing them, I noticed on the back that they were made in Korea!

I am reading Wayne all the comments, so keep them coming! I hope you all are having an easier time getting on. Wayne needs lots of support and love right now. The news on Friday was really upsetting to both of us. Keep all those prayers going as well. We really appreciate that.

How to Post and Other Things

I just got an email from Carol telling me she was unable to post comments. So I started writing her back and realized that others of you might need the info as well, so here it is.

The comments are at the very bottom of each post. There are comments there already that you should be able to read. I think that to post a comment, you have to have a gmail account. That's pretty easy though and once you have it you don't ever have to use it except for this. I do know that getting the gmail account can be a pain sometimes. They give you some characters to input that are supposed to match theirs and I can not tell you how many times I have had to do that part up to three or four times when creating an email. (I was managing a supported employment company in Wenatchee and I used to create emails for my clients every day.) Once you get past that hurdle though all you have to do is sign in at the blog site and you will be able to post comments. Let me know if you still have trouble. Donna said she couldn't get on either, but we have another friend who got on just fine.

You should see Wayne. He is taking steroids and he has gained weight! He dropped about 10 pounds before he was diagnosed, but he has put that back on and more. He is getting a pretty good tummy on him and his face is rounded. His clothes are going to be too small if he keeps gaining. But he looks great at his weight! I'll take some pictures. He's also almost bald. We cut his hair off in anticipation of its falling out during the radiation process. They were concerned that if he left it, the mask they made him wouldn't fit. However, it didn't fall out, so now he has a buzz cut because what was cut is starting to grow back in. But it will just come out again with the chemo he is going to start next week. I'll take some pictures and get them up or I'll have Amanda do that.

We are moving on Friday so while I will make every effort to get a post up I can't make any promises. As I mentioned before, we were asked to leave with very little notice, so we aren't sure where we are going. But we'll let everyone know as soon as we can.

PET scan results

The oncologist, Dr Tucker, came in the door to the exam room at today's visit cc and immediately announced that the PET scan didn't show any cancer anywhere but the lungs. There are some lymph nodes in the lungs that stood out, but none in the bones, which is where we thought it all started. Interestingly, they couldn't find any in the brain either. It appears that Wayne is one of those people for whom radiation works well.

The oncologist would like to do six weeks of daily lung radiation as well as once a week of chemo. I think it may last a but longer than the radiation. There is a glitch though: Wayne apparently has emphysema that has advanced some, which increases the risk of developing radiation pneumonitis, which can be fatal. Usually it is cured with steroids, so knowing this, I think they will be very careful. Then there is the fact that the radiology oncologist at our medical center (Dr Register) doesn't like to do radiation on lungs. Apparently they don't do it often there. But Dr Tucker has seen this protocol work to cure cancer that is even as advanced as Wayne's, so he really wants to give it a try as long as Dr. Register agrees.

Wayne has his last brain radiation tomorrow. We will be seeing Dr. Register at that time, so we will talk about it with him. Last week he indicated that although he doesn't like to radiate the lungs, he will defer to Dr. Tucker. I'm not sure though if he knew about the emphysema. Still, if he doesn't, then the chemotherapy will not be curative, but merely palliative--that which only treats the symptoms to try to keep someone more comfortable longer. Obviously, Wayne wants to go for the cure.

We recognize that the cure could possibly kill him, but we know that the cancer definitely will if he doesn't get the radiation. A small risk of an earlier death seems like the best bet. Of course there is one other thing that he has to do in order to get that cure. He has to quit smoking. So he has finally agreed to quit. I am so glad. I quit myself fourteen years ago, and it's hard. You have to make the decision for yourself to quit and other people trying to push you to quit just make you want to smoke more. But tonight, Wayne finally agreed that it is time to stop. He has less than two packs left, and I am not buying him any more. Period.

Wayne has also been getting home PT and OT. Today the occupational therapist cut him loose. She said that he is doing really well, and while they had some concerns early on that he might lose a bit more function from the radiation before he got it back, this hasn't been the case. He is stronger than he was when he was released from the hospital by quite a bit. He is still needing to use his walker and shower chair, and we're really grateful for the handicapped parking permit because it really helps when we're able to be out and about, but the therapist said he will likely have to reprogram some of his brain with new pathways before becoming that sure-footed mountain goat he's always been. Still, though, she didn't say it wouldn't happen!

While you are praying for him, pray too that it will not be so terribly hard for him to quit. Please sign up for gmail and write comments on the blog if you can. If one person leaves a comment, then everyone can read it and comment back and forth. I have a weight loss blog at MSN spaces and I get some great discussions going sometimes. I love it. I know Wayne will appreciate hearing from everyone in any form, however, so if writing on the blog doesn't work for you, that's okay too.

We are going to be moving this week. We have been renting from a friend, and I think this all got too much for her and she has asked us to be out before next weekend. That in itself is going to be fun, but that's the way life is. Wayne's cell number for the moment is 509-607-1532. Mine is 509-237-0597. If we aren't available any other way, you can get us on those numbers. We will be changing cells soon, but I'll keep you posted.

If you have any questions or concerns about anything, feel free to write in the comments section, send me an email or call one of us. I will update again after talking to Dr. Register tomorrow and again after seeing Dr. Tucker again on Friday.

My Mountain Goat Loses His Balance

I am Barbara, and I am writing this blog. Wayne, my husband, was diagnosed with metastatic lung cancer two and a half weeks ago. He has brain tumors as well, too many to operate, and we still don't know if it's in any other area of his body. There are spots in his right lower back that are suggestive of bone cancer although the oncologist doesn't think it is.

This all happened really fast. In late May, Wayne fell and cracked a couple ribs. Over the next few months, he fell occasionally, which is really unusual for him. He's a mountain goat. By late July, we were kidding about it. But by the first of August, it became critical. We saw our family doctor on the second of August, and we talked about getting an MRI, The neurological testing was abnormal. I was thinking that he probably had another benign brain tumor, and while I wasn't thrilled about it, it wasn't anything we couldn't handle. Then the doctor took an x-ray of Wayne's back to look for a reason for his weakness in his leg.

The next night, the doctor called and told me that the radiologist had picked up an area on the x-ray that was suggestive of metastatic bone cancer. I went cold. I told Wayne and then went about researching it online. What it meant was that if this was cancer, it was already metastasized to the bones because bone cancer is unusual in adults as a primary cancer. I learned that the primary cancer could be lung cancer.

On Wednesday we went back and started getting tests. Wayne had a bone CT, which was even more suggestive than the x-ray, and a chest x-ray, which showed a spot on his right lung, so then it was a chest CT and a definite diagnosis of lung cancer. During all this, Wayne's balance was getting worse by the day, so they made him an appointment for an MRI on Sunday and another with an oncologist for the next day.

On Thursday the oncologist told us that the CT showed that Wayne has cancer in his lower lobe of his right lung and that it has wrapped itself around his chest wall and attached to his diaphragm. There are also nodules on his thyroid, some potentially hot lymph nodes in his lungs, and a cyst on his kidney. He wasn't as concerned about the pelvic CT though. He then performed another neurological exam and his findings were markedly different from those on Monday. We talked about what to do when we got the MRI results back. He had hoped that he would be able to go in and take out a single brain tumor. However, when the MRI results were in, they showed four tumors and two small things that may be the beginnings of new tumors, and that is not considered operable. One of the tumors was bigger than the others as well. And on top of that, the MRI itself must have irritated his brain because right afterward, he had a huge exacerbation of neurological symptoms. I left him standing outside the car while I ran into the grocery store for a few things and when I came out, he seemed dazed and confused. I asked him if he'd had a seizure and he said no but that he didn't feel right. I asked why he didn't come find me and he said his legs weren't working. By the time we got home he had to sit down and go up all the stairs on his butt. I sat down to call the on call neurologist and found that she had left me a message to call her right away. I ended up taking him back to Wenatchee to be admitted to the hospital for IV steroids. He got better pretty fast, but it was terrifying. Five days after first hearing the word cancer, he was in a crisis situation with it. It happened way too fast. And it seemed like every day the news was worse and worse. While in the hospital they got a lung biopsy and we got the first break. Of the four major types of lung cancer, his is the best to have. He has non small cell anode-carcinoma.

It's mind boggling to me that some of the first symptoms that presented were neurological. He has been telling the VA doctor for a year that he has pain in the bottoms of his legs as well as all the way up to his hip in his right leg. However, the first doctor there told him it was probably just neuropathy from his diabetes that he doesn't have. I don't know where he got that idea, but we had a hard time shaking it. He didn't take an x-ray or even examine his legs or back. Upon admit to the VA system he should have had a chest x-ray, but they were too busy. They were always too busy. The second doctor was not even willing to discuss the pain in his legs. It's like they thought he was drug seeking. And now, I feel really bad that I didn't speak up more for him. He doesn't complain unless it really hurts, and while he is now getting medication for the pain, he should have been getting something better than ibuprofen all along.

But we don't yet understand how the cancer is causing the leg pain, just that it is, so even if the doctor had explored the cause for the pain, he might not have found the cause. And even if Wayne had had a chest x-ray a year ago, it might have been clean. Lung cancer is aggressive cancer and it grows and spreads fast.

It's been four weeks now, and I am so full of information that I haven't passe on. I need to let you know that we do have some new and interesting information. The radiologist looked over the CT of the pelvis area and the spots that at first were suspicious, looked benign to him, as well as to the oncologist. However, he found another area that hadn't been discussed at all that he did not like. So Wayne has finally been scheduled for a PET scan. He will have it Saturday, and on Monday we will finally have the whole picture.

Our oncologist has seen people with the same cancer Wayne has beat it. He has two former patients who had inoperable lung cancer with inoperable brain tumors who are still alive and cancer free seven years after their treatment. As long as it isn't in the bones or anywhere else, he is still going to try for the cure. The radiologist-oncologist was really surprised about the orders for Wayne's lungs. He doesn't like to do lungs and the doctors here don't usually do that, but also, they don't really see this advanced cancer as curable. I am so glad we got the one who does. So if he orders radiation for Wayne's lungs then that's what we want. He also wants to concurrently do a low dose of chemo. Amanda knows which drugs they are, but one is taxol, interestingly enough. He will have the radiation five days a week for seven to eight weeks and the chemo once a week for about the same amount of time.

However, if the PET scan shows there is cancer anywhere else then they will do very aggressive chemotherapy. Radiation makes him a little tired, but I think aggressive chemotherapy would really do him in. Our dear friend, Denise, was diagnosed with end stage three colon cancer almost two years ago. She had surgery where they thought they got it all, but it was in her lymph node and on the move, so she had this really hard stage four chemotherapy and it was really hard on her. She has still not recovered from all the side effects.

And when we met with the radiologist-oncologist, he said that the fact that Wayne's balance is getting better is a sign that the radiation is working and the tumors are shrinking! Yeah! He has started to titrate the steroids down. If any symptoms do come back, then he will have to go back up though. We are hoping that by the end of the two weeks, the tumors will be shrunk completely, never to return.

In other news, because we were working for rent, we are needing to move. Originally, we had talked about staying only three months anyway, so it's not a problem and in fact will be better for us because as much as we love Leavenworth, driving back and forth to Wenatchee every day is wearing on us, and especially on Wayne. So we will be looking for an apartment in Wenatchee or East Wenatchee, and hope to move within a week or so. I absolutely hate moving, so we will try to find a place where we can stay for a long time.

I am so proud of how Wayne is handling this. He is optimistic and is still laughing and cracking jokes. He is choosing to fight as hard as he can while keeping up his sense of humor. And we have found a great side effect of the steroids—he's putting on a bit of weight and for the first time since I've ever known him, he has a tummy. He also has a great shaped head so that even bald, he looks pretty good! I am glad, however, that he won't lose his facial hair.

I am sorry I have taken so long to get this up and going, but now that it's up, it will be much easier for me to update. I think Amanda sent out a link to her face-book page, where she has posted pictures of our hair cutting party, with Wayne in a mullet, and a Mohawk before being bald. Just in case, here it is again.  http://www.facebook.com/album.php?aid=2626878&id=10739049&l=ce249aeb5b

I will try to upload pictures as I can.