Saying Goodbye

Dear Wayne,

On Tuesday, Mandy, Dan, Mary, Tom, Caitlin and I took your ashes to various spots in Leavenworth to let them go.  We didn't make it to Icicle Gorge because the road was washed out but we found some gorgeous spots anyway including one way up high that you used to love.  On Thursday, we (just the three of us) went to Montana to finish saying goodbye.  We had a short service with a gun salute that made most of us very weepy and then everyone took the rest of your ashes to the river on a 20 mile float trip.  They are in the river.  Before we went on either journey, Carol Ann brought out tee-shirts with your picture on them that we all wore to the cemetery and some of us even down the river.  Later we came home to Fern's and played the CDs of music you loved that Carol made. Fern did a great job organizing, Lucile and Bob did a great job cooking and everyone else just pitched in and helped make this weekend a success.  You are loved by everyone and you are sorely missed.  There was a glaring absence this weekend but this was very healing for everyone.  I will always love you.  Good bye, My Love.

happy birthday

Today would have been Wayne's 56th birthday.  I am finding today to be most difficult.  He should have lived to see it.  He had so much more he wanted to see and do.  He wasn't ready to die. And none of his family was ready to see him die. 

So today I went out and got gooey rich chocolate cake with several of my friends and we toasted him with cake and honored his birthday.  But tonight I am so sad.

I remember Wayne's 40th birthday.  We had recently moved to Leavenworth, and he loved that we had a mountain in our back yard.  So he decided to climb it the night before his birthday and sleep up there so that he could awake and be able to look out and down on the whole area.  And he wanted to do it alone.  So he did and he really loved the experience.  He loved birthdays.

So happy birthday, my love, my soul mate. I will continue to celebrate your birthdays for you. I love you and miss you more than I can ever convey in a written message.  I hope that wherever you are, you are celebrating too.  

Wayne

For those of you who are not family, I have sad news to share.  Wayne lost his fight yesterday afternoon.  He went peacefully, surrounded by him entire family except Amanda, who missed it by just two hours.  At least she had seen him in February, and during the last good days he had.  We don't know any of the details yet and are going to wait until tomorrow to plan, but there will be a memorial service in Missoula this week, and a commemoration of life service in Leavenworth next week sometime.  Thank you for everyone who wrote comments and for those of you who just wrote to me by email or called.  There are many more of you as well.  He was a man well loved and he will be horribly missed. 

Hospice

I think by now all the family and a number of our friends know that Wayne isn't doing so well.  He is in he hospice in patient facility, which is a section of a nursing home.  It's better than the rest of the nursing home though so that is something.  

He came home from the hospital and was referred to hospice a couple weeks ago and then only five days or so after he was admitted to the hospice program he had to go in.  He had increasing pain and finally, when he was screaming in pain, I gave him dilaudid, the medication that I knew would make him wacky as heck, but that would stop or at least dull the pain.  His regular pain meds weren't even touching it.  And Wayne went away.  

He has continued to need it so the nurses have been documenting how much of the vicodan and dilaudid it takes to keep him comfortable, and then today they started him on a fentynal patch. For breakthrough pain he will have vicodan and we are going to try not to give him any dilaudid at all. With this mix, we are hoping against all hope that he will come out of his stupor and come back to his previous self, but honestly, we don't know that he will.  He is going downhill fast.  Everyone in the family is coming the first week of April and regardless of his condition, Glenda and I decided tonight that we will take him out of there and bring him home.  There should be plenty of helpers.  Wayne seems to have lost his fight, and we don't know what to do to bring it back.  Maybe after the visit by his family he will feel more like fighting.  I sure hope so.  Anyway this is a post that is extremely hard for me to write and one that I didn't want to have to write.  Please understand if it's so short.   Feel free to call Glenda or me to hear more specifics.

Quitting Chemo

As all the family knows by now, Wayne is quitting chemo.  He has just been in the hospital again and is suffering from "failure to  thrive," a medical way of saying that his chemo is really hard on him and he isn't eating close to enough.  This has been going on for quite a while.  I can get him to eat a bit more at home than at the hospital but that isn't saying much.  We were worried about telling his doctor that he wanted to quit for four weeks, and his doctor came in the morning he released him and said he felt that Wayne should quit period.  So he is going to take two months and then hopefully talk the doctor into trying again for a short period and then take frequent breaks--maybe like six weeks on and four weeks off,  We are hoping with this regime he will not get so depleted and still get enough chemo to keep those tumors in check.  Right now they are smaller than they have ever been, so we have some room to experiment.  However, if he keeps going the way he is going he is going to be in serious trouble sooner rather than later.  We are hoping that without the chemo he may feel better enough to enjoy life a bit as well as to eat.

We went to the VA doctor today and he agreed that medical marijuana would be good for Wayne, but he is not allowed to prescribe it.  It's legal her and here are lots of clinics here for it though so we will just have to go and find one we can afford.  If it helps his appetite, it will be worth it!  At this point we will try anything, and apparently they have this down to a science and he can get it in pill  (yeah I don't have to smell it!) and it can be tailored to his needs.  If it works, great.  I just have this big block against it because it's been illegal for so long.  But his health is more important than my qualms.

The VA doctor also made the referral today to hospice.  They can come in here and help in many different ways.  They have nursing and people to help with pain.  We are hoping for a patch that will deliver pain meds constantly in smaller amounts so that he always keeps ahead of the pain rather than having to always play catch up.  He is starting to have chest pain now and it seems to come in waves.  It really hurts him when it comes and sometimes it's as often as every ten seconds or so and others it;s every five to ten minutes.  It's hard to keep up with.  They also offer respite care and counseling among other services.  I'd like counseling even if Wayne doesn't.  They also have in home volunteers who will come in for an hour or two and help out.  Right now I can't really leave him, even to go and do laundry, and he's too tired for me to take along on all my errands.  He gets worn out too easily,  So I am looking forward to having them here helping.

Wayne is very weak, but he has started physical therapy to strengthen his muscles, especially his legs, and he is going to get to do it in a therapy pool.  I am also doing water therapy, so I have been in this pool and it is wonderful.  They keep it at about 98 degrees.  Wayne is always complaining of being cold, so this pool should warm him up.  The therapist he has specializes in patients with cancer, so she understands how weak he is and about that pesky failure to thrive.  I think it's going to do him a world of good.  We also have a therapist coming to the house once or twice a week to work within the home setting.  I am hoping that he will do something different and help Wayne navigate more easily around the apartment.  We have wide paths for him to walk with the walker, but I am hoping that he can help make it even better.  We are also getting a wheel chair as soon as they can work out the details with medicaid, who even though we are now divorced, are still requiring a $1000 a month copay before it kicks in for each month,  But I think Carol is bringing one down tomorrow to borrow until it comes.  Now we will be able to take walks along the river.  I am looking forward to having it, and we are both looking forward to Carol's visit.  She and Wayne have a special relationship and I am glad she is able to come as often as she does.  Little sisters are great.

We have a new bed, courtesy of Glenda, that is much better for Wayne,  It came today and is so much easier for him to get in and out of.  It's also a bit more narrow than what we had so he has a better path to it and can get the walker all the way to where he climbs in.  He was not able to do that with out old bed, which was really a hide a bed with a blow up mattress on top.  He just came out and told me that he really likes it,  I am very glad for him.

I will try to let you know how his eating is going.  I hope he starts eating very soon.  Part of the trouble is his teeth that he had pulled.  They have just now healed enough to get impressions for his dentures made.  Soon he will have dentures and will have a lot more choices of what to eat.  But by then the taste thing that comes with chemo as well at his lack of appetite might have warn off,  I sure hope so.  I'll keep you posted.

And So it Goes

The first thing to tell you is that Wayne and I are officially divorced.  He went to court today to finalize it.  I already had a physical therapy appointment scheduled when we got the date, but it was better that he went because I would have cried for sure.  I half expected Wayne to change his mind because last week when we talked about it, he was having second thoughts.  But we need him to have good medical.  Right now we have to pay $1000.00 plus every month for his medicaid.  (The hospital is writing it off but we have to talk about it and I think it's a real pain for them and us.)  Now he will not only have his medicaid, but he will also have his Social Security or SSI, plus he will have food stamps, so our meager income is going to get better.  But the price was really high.  Neither of us wanted to be divorced.  We've been married over 23 years and we really wanted to at least get to 25.  Both of our hearts are breaking.

Also Wayne wasn't able to transfer to Dr.Thomas after all, partially because Dr. Nicholes didn't want to let him go.  So Wayne is continuing to have chemo every week.  He made the decision to do this and I am supporting him.  Dr. Nicholes told us that he can keep Wayne alive for a long time with chemo.  I don't know what a long time means.  But Amanda is coming tomorrow, and I am hoping she will ask all the questions that I either forgot or didn't get adequate answers for.  

One thing we found out was that Wayne has permanent brain damage from the radiation, and that is is responisible for a number of Wayne's symptoms, such as not being able to walk well and his speech, which has gotten worse.  So it's hard to know what is caused by the radiation and what is caused by chemo.  I do know the chemo is making it very hard for Wayne's gums to heal enough to get his dentures.  We are hoping by the beginning of March he will be healed enough to get his impressions. Anyway, we are seeing the neurologist again on Thursday so I will try to explain his brain damage better next post.

This is a short post, but I will try to get another one out soon after seeing the neurologist so I can explain that. 

Back in the Hospital, again

The fact that Wayne is back in the hospital is probably known to everyone by now.  However, I don't know if you know why.  Friday night he went to bed and lay there moaning so I asked what was wrong.  He told me his heart hurt.  So we went to the ER.  It was packed but he got right in, no waiting.  They did an EKG and ran cardiac enzymes and there was nothing wrong with his heart.  Thank GOD.  But then they did a chest CT to check for a pulmonary embolism, and he didn't have one of those either, also thank God.  However.

Apparently there is another tumor.  It's in his right abdominal area, up high and is larger than the one in his lung was when it was first found.  The doctor also said it was also suggestive of cancer in his spine.  So that was obviously upsetting.  Then Wayne started falling apart cognatively.  He became unable to answer questions or even talk.  Then he started getting agitated, and the doctor called it sun downing, which is a type of dementia that happens to late stage cancer patients (and alzheimer's patients) in the evening.  That was even more upsetting.  So they admitted him.  We were in the ER from about 9 pm until 3:45 am and finally they sent me home and told me I would need to get some sleep and that it would still be at least another hour and they had to have a sitter with him who would have to be called in from home.

Saturday morning the oncologist on call came in to see us just as I got to the hospital.  He told us emphatically that this is a terminal cancer and that we are looking at months, not years.  He has a great bedside manner though and even though he delivered the worst of news, Glenda, Carol and I all liked him.  Over the next few days, Glenda and I liked him even more and when Wayne started coming around, he did too.  So we have fired Dr. Nicholes and will be transfering to this new doctor, Dr. Thomas.  Since making that decision, we have talked to a number of medical personel who don't like him either, three of whom had relatives who had him as a doctor and who really didn't like him.  The general consensis is that he is rude and has a horrible bedside manner, but for me, I feel betrayed,

He led us to believe that Wayne could live with cancer for a very long time.  And when I'd ask questions, he wouldn't answer or just blow me off.  And 
I want to know why he didn't know about the other tumor.  And you'll never believe what he said when I asked him about it.  He said it wasn't significant.  I'm upset because he refuses to follow up with Wayne's leg pain or with whether or not there is cancer in the spine.  And then there were the two units of packed red blood cells that Wayne had to have yesterday, when he kept telling us that Wayne's blood counts were just great, even after the VA had sent us the CBC report they did three weeks ago that noted that Wayne is anemic and saying they were sure the oncologist would take care of that.  But then it's pretty hard to go over much when you see the doctor for two minutes at best, and in an open area where other patients are.  (Hippa violations????)  And today he said that the chemo wouldn't cause the anemia, so Wayne must be bleeding internally and ordered more tests.  But then even when I have told him that avastin really wipes Wayne out, he told me it wouldn't do that.  He doesn't listen to me and is quick to tell me I am wrong and won't answer questions.  So we are switching and we are very happy about it.

Glenda and i have also wondering if Wayne shouldn't, at the very least, have a break from chemo.  Wayne is so worn down and tired that he won't go anywhere or do anything.  He spends his days laying down, listening to music or sleeping, and watching a little TV.  He is no longer interested in anything he used to be interested in.  He hasn't even tried to quilt, and he has stopped going places with me.  He used to go to the store with me or on other errands but he doesn't feel good enough to do that any more.  He has no quality of life.  He doesn't eat much anymore either.  Dr. Thomas said that when the tumor sizes are down, that is a good time to take a break. He also said he felt that avastin isn't indicated.  I feel like Dr. Nicholes doesn't see people; he just sees tumors that need to be shrunk and getting them smaller at any cost is what he believes in.  One nurse said that her grandmother died of cardiac arrest due to too much chemo.  She said she wishes she had known about Dr. Nicholes before, but that was before she became an oncology nurse.

Wayne isn't just a tumor and I won't have him treated that way any longer.  It sounds as though we may lose him, but miracles happen and maybe we can have one.  I hope everyone will keep up their prayers.  And while we prepare for the worst, we should all hope for the best.  Wayne's attitude is very good still and he is still all about fighting.  He wants to live and I want him to live too as do all of you.  And there are always clinical trials as long as he's not just a guinea pig.

Shrinking Tumor

Wayne had another chest x-ray on Tuesday and today we found out that the tumor is still shrinking.  Yeah!  I asked the doctor how long Wayne would have to have chemo--I was hoping for an answer that estimated time--and he said that chemo would continue until the tumor stops shrinking or is gone.  It's been three and a half months on this chemo protocol and the tumor has shrunk by way more than half, so I am hoping that in the next three months the tumors will be gone.  But with chemo, who knows!

Meanwhile, Wayne had to have all his teeth pulled Monday.  He has a raging infection and as the teeth came out, the infection came with them.  Because he went to a low income clinic, it was the basic kind of dentistry--no going out, not even and nitrous oxide.  So I went in with him and watched while they pulled 17 teeth.  Some just almost fell out and others were hard.  A number of teeth were rotten and broke when they pulled on them.  I don't think it was a fun experience at all,  They used a chisel on a number of teeth.  But the infection was affecting him, and not just in his mouth.  He's been pretty sick since they came out, but he's taking antibiotics and today the oncologist gave him some IV antibiotics.  Once that infection clears up, he should be a lot better.  He needs to wait six weeks before he gets the dentures to be sure that he is all healed, but once he gets them and gets used to them, he should be much better off.  He hasn't been able to eat anything that isn't soft for several months.  So he is really looking forward to being able to eat again, and I am looking forward to being able to cook one dinner instead of two!

Even though Wayne is going through so much, his attitude is still positive.  Even when he is crawling in bed mid day because he is so tired or feeling so bad, he is able to joke and talk about when he is cured.  He is so positive that he is going to beat this that it's infectious.  I have hope that he will.  Lung cancer statistics show that 10% of stage 4 lung cancer patients will live for longer than five years.  I think Wayne is going to be in that 10%.

Avastin Again

I don't know if anyone is reading the blog anymore since it's been so long since I wrote a new entry, but as Mandy's comment said a few days ago, Wayne was finally approved for medicaid and his avastin was finally restarted.  He enjoyed a nice break from it, and during the break he has grown stronger, which has been wonderful.  He is no longer using a walker in the house.  He has been feeling better and eating better.  But with the good comes the bad, and the avastin knocked him on his butt.  I rhink it feels even worse because he had gotten so much better.  But tonight he was feeling terrible, and he climbed in bed at nine.

He got another chest xray a week and a half ago, and even without the avastin his tumor has continued to get smaller although not a lot.  He has another chest xray again next week and I hope that the addition back of the avastin will have decreased the size again.  I'll let you know.  Sorry about the long time in between entries--my computer has been down for several weeks.