Friday, March 11, 2011

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.

11 comments:

  1. So if the VA doctor can't prescribe it, it should not be to hard to find one that will. Maybe even just a General Practitioner would give it to him. I'm still having a hard time believing that his cancer doctor won't give it to him. Unreal that a person would be so cruel.
    Wayne, we support you in all decisions you make.
    If a break from chemo is what you need ,then so be it. Hopefully you can get hospice care very soon.
    I am excited that Carol is coming to visit you this week-end. We will be with you guys in spirit.Hopefully the weather will be somewhat nice and you will be able to go for an outing. It always does a person good to get out the the house once in awhile.
    You are always in our thoughts and prayers.
    Love you!!!

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  2. Hospice came today. They took one look at Wayne and made all kinds of suggestions. They suggested a hospital bed with an air mattress made to prevent bed sores in the living room so that he can be more comfortable watching TV. They suggested a commode to keep by the bed. And a tray for the bed. And then they arranged to get it all here today along with the wheel chair we've been trying to get for over a week. But my living room doesn't look right. It looks like a very sick person lives here, and one does, but I sure haven't wanted to see it. I have to stop here and just say that I can't stop crying tonight (or many other nights for that matter) but tonight it is so in my face for the first time in a way it hasn't been before. Until now, when Wayne went to bed at night, you couldn't tell a sick person lives here and I could pretend for a few hours. But tonight when he went to be, the living room just looks like a waiting room. But hospice brought other good things, Wayne will have a nurse's aid to help him with personal things and a volunteer to help with errands or to stay while I do errands. He gets a massage therapist in our home up to twice a week. We both get a music therapist--a man who brings his harp and plays for us. His wife works at St Pat's and she came and played for us twice and it was just wonderful. They also have counseling for both of us, and I am ready for some. So in spite of the new and obviously meant-for-sick-people new surroundings in our living room, I think they will be good for us. And I forgot to ask about the pot today, but will do tomorrow. I can call them 24 hours a day. And they have their own doctor.

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  3. To those who would like to post but haven't figured out how to: you need to get a gmail email address. It's easy and all you have to do is go to gmail.com and follow the prompts. Then once you have gmail, you can sign in and then you will be able to comment. My cousin brought it to my attention that she had tried but couldn't figure it out. The sign in is at the top right of the computer screen at the top of the page.

    To Donna: Thank you for writing every day and cheering Wayne on. It helps.

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  4. Well of course, I think of my brother non-stop. I can't wait until I see everyone in three weeks. Glad to hear all of the services that hospice has to offer. Please use all they have to offer. That is what they are there for. It is most important to keep Wayne as comfortable as possible. I have heard many good things about the music therpathy and am so glad that you guys will receive it. I have always believed in the power of music. Also, try to keep Wayne happy and laughing. Laughter is the best medicine available. Proven statistically.(I think that how you spell it).If not, you know what I mean. I am a firm believer in positive energy.
    Sending lots of love and hugs. Can't wait until I can give you a hug in person.

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  5. If Hospice can't help with the marijuana then I will take him to Partnership Health. As for the oncologist, he's an asshole. He has refused to give Wayne any pain medicine because he doesn't think his pain is cancer related. I know it is, but there you have it. We've been getting pain meds from the VA, where they do think it's cancer related.

    Wayne is getting better and better each day. A few days ago he ate a whole egg for breakfast. yesterday he at two who servings of ice cream plus three ensures. Today he has eaten just for breakfast half a bowl of oatmeal and an egg. He is sipping on an ensure. His tastebuds will take about a month to get back to normal but as soon as he has teeth he will have so much more of a variety to try to eat from. I am excited!
    And I can tell he is feeling better because he is cracking jokes again.

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  6. Hey, Glad to hear you have a good hospice setup there. Having a break from the chemo and having the great care from hospice should make things easier. We had hospice for Mom and they were so focused on Mom's well-being I was quite pleasantly surprised. If they are similar, they'll even come in and bathe Wayne if needed. Barb, we recently got a juicer at a yard sale, and the freshly made juice is full of good stuff and tastes great. We buy the old cheap or on-sale fruit so it is really cheap. You can juice everything except bananas- they really don't have juice. You can add them to the juice in a blender. Maybe you could borrow a juicer....
    We are having warmer weather here...it is forecast to be sunny and in the 70's this week...perfect deck-sittin' weather, Wayne...
    I am going to email you a picture of a pipestone pipe I just carved.
    You two take care.
    We love you both.
    John and Denise

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  7. Glad that the bed from the hospice is there. Who cares about what the living room looks like. It's the quality or care that Wayne is provided that counts. Like I said before, let them do whatever they can to make things easier for you. Also happy that Carol was able to come and visit. I'm sure you had a nice time. Thinking of you as always.
    Love you.P.S. Eat some ice cream. It will make you happy!!!

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  8. Funny you say ice cream, Donna. Thats what he had for breakfast this morning :) Go, Dad.

    Just as an update-- my mom's computer is currently not functional, so I thought I'd write a little note. My dad is doing a bit better. He is still having a lot of pain, but they are working on getting a pain patch to make sure it is constantly controlled--maybe tomorrow? Apparently the green treat that a visitor brought him was pretty helpful and they are looking forward to getting him a green card. He is eating and drinking more-- ice cream and hamburger helper today plus several glasses of water (he's drinking water! Thats enormous improvement!). It sounds like he is also really enjoying the harpist that hospice sends over and in general hospice is providing an incredible variety of services to help them out-- pain relief massage, music therapy, help around the house, supervision of medications, counseling, physical therapy and the list goes on. Apparently just one day of physical therapy yesterday helped improve his balance. He also got impressions taken today so that he can have his dentures made-- I think he'll get them next week. Finally :) It sounds like things are starting to go better and I very much hope his quality of life continues to improve!

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  9. Sorry to hear that you are experiencing so much pain. Hopefully they will be able to get it under control for you soon. Be sure to keep your guardian angel close to you. Love you so much and hope the next few days will find you feeling better. Try to keep a positive attitude, which is one of your best qualities. Always in our prayers.

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  10. Hey Wayne, thinking of you and hoping that the respite care is helping and you are no longer in as much pain as before. Only two more weeks until we can all get together for a good old fashioned visit and lots of laughs. It will be good to have the entire famiy together. Try to get as much rest as possible and hopefully a bit of strength back. Love you always.

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  11. I finally found Susan and had a nice visit with her on the phone Friday night. She is going to try to be in Montana to see Wayne when the rest of us are there.
    Wayne, We are all praying for you and hopefully you will have enough strength to enjoy the visit with all. We promise not to tire you out. The most important thing I think is for you to spend as much time with Dad as possible. We all love you very much. Today is the first day of spring so I am sending warmth and sunshine. :)

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