Curious, personal pole

[MissyMouse]

Hi gang,  I'm just curious ... Doug knows all the details but in short I have some decisions to make with my rheumatoid arthritis meds versus my breast cancer ... so I'm kind of curious where ya'll stand on this issue.  Which would you pick and why?

Quality of of life

or

Duration of life

Mouse

[DougV]

Even though you know my answer but to get the ball rolling...

Quality.

Why would fill a book. Felt that way as long as I can remember.  The few times I have been hurt or forced to be inactive were the most miserable of my life.  I love my independence, it is part of who I am.  Hate being a burden on others.  I am an extremely private person.  In part because I have lived in other parts of the world where the cultural few of death is far different than here and I do not view life and death the same as most Americans.  I've seen too much.  My dad died after two years of not knowing what was going on with people lined up to take advantage of him.  Same is happening to my mom right now.  My maw in law lived for a year and a half laying in a bed with a tube in her stomach.  Oh joy. COPD and yes RA patients spending years gasping for breath.  A 109 yr old who was kept alive by a well meaning family while she got surgery after surgery, did not know who or where she was, kept restrained because she had a habit of chewing off her own fingers. 

But both is good.  I quit drinking years before I knew about hep because it impacted quality and duration.  Quit smoking for same reason and then because I knew about hep.  Lost a bunch of weight, watch what I eat, try and stay active, again for both.  Heck treated three times and did maintenance trial for same reason.  As long as I can stand on my own two feet, see with my own (and parts of somebody else) eyes, know who I am and who the people around me are, I'm good and hope to beat Moses' record (wasn't that 900?), but when the quality is gone, so am I.

Of course I hope to go of massive MI while involved in sexual orgy with Swedish Womens Ski Team, but that is a different story. 

I do absolutely respect the duration folks and their reasons but for me quality is life.

Doug

[willy]

I think most of us say quality, and then after that is gone and all that is left is quantity we decide; quantity ain't so bad.   

My 23 year old told me this week that he would hate to think about being my age.    There was a time I prolly thought that too.

As you approach the end of either......I think our viewpoint could change.  Until you are there I'd suppose many of us cannot know.

My mother has Alzheimer's and is out of it.  To me it doesn't seem as though we need to live into that stage where we are so compromised.

I have a neighbor who nearly died a few years ago.  He is 90.  I broke into his house and saved his life a few years ago.  he has told me a few times that he wishes he had just passed. His QOL ain't that great since.

I don't know the answer.  From where I sit today I'd prefer quality over quantity.  LOL; I'm not sure I am experiencing quality this moment though.    

willy

[Jazzdenova]

Already have a living will.
If I ain't there to make a decision, I should have left awhile ago.
So I guess quanity and quality as long as I can and then don't mourn me and throw a party in my name.

[willy]

I hope that I am not letting the cat out of the bag...... but we are addressing a person who was on a do not resuscitate order years ago.  (2 decades+/-?)
Maybe Missy would share that story.  It adds yet another wrinkle to this poll.

willy

[Dude]

It is my sincere belief that, while it seems you can choose only one or the other, you can actually attain both. Believe like you've never believed before, make it iron clad in your minds will to have both good quality, and a good long number of years. My goal is 111. If I don't make it, at least I made it my goal, and in seeing goals as reachable points along a line, I truck in that direction, I force a smile when I ought to (in worldly response) bitch and complain, I get mad at giving up and determine never to, and I allow my faith free reign in my life, asking God's wisdom in guidance and in balancing the parts of me I can't do alone. I allow myself to fall, and fail, and I do, but because I allow it I can raise myself back up a little easier, because it's not surprising that it happens now and then. I latch onto good support from those who care, and I use them because they expect me to. Thats why they're there.

But I've never been in your shoes, Mouse. I don't feel the same weight of it all. My weight is varied, but different. Your's is at your front door trying to bring you down to your knees. But if there's one amazing human being that has crossed my path in this wild life, it's you. And it's Robin. And so many here. But to have survived as many life threatening health issues as you have and stand there smiling, victorious after fighting every battle, continuing to write coherent and intelligent posts as much as you have, I can say that if anyone can win, girl, it's you. So go for another mind-blowing victory, and show those doctors who's in charge. You didn't make it this far to give up.

When I told my brother-in-law, who has been a medical tech, nurse, and emergency rescue Lieutenant in our county for many years, the first thing he said to me was, "It's a death sentence". That was in 2001. He thought I'd be around for 5 more years tops. And he's in a medical career field. I think they think these things are so because of so many folks just giving up. Doesn't that make you mad that they don't give us more credit than that? Makes me mad enough to show them they were sadly misinformed.

They don't know us too well. We don't know ourselves well enough. They too often say, and we too often think, this is it, when it isn't, for a long time. It takes that personal life threat thing to snap you out of it, and make you determined enough to elevate your mind out of that hole you're in. Once you get up out of it, take a deep breath and walk through the valley all over again. Fear nothing, He walks beside you, hold your head up, and march. Believe, believe, believe. Brainwash yourself into becoming sure that not only are you capable of overcoming all threats, you chew them up and spit them out in your stride. You're a conquering lioness. Roar, lion, roar, in the full richness of belief. God wants you to overcome every threat, and take on every challenge like Joan of Arc. You are Joan, Mouse (you're definitely no mouse!)... different time, different parameters, but the same challenges, courageously fighting the thing that threatens life and liberty.

I'm praying (we all are) and will not stop, daily, and you do all you can to get the most of both quality AND quantity, because I need to see you online daily. You are encouraging to us all, and have been a source of great hope for me and so many others. You're a good, valued, wholesome friend, and we need to keep you around for a very long time, Mouse. I, for one, am always in reach for you if you need a friend or someone to push you in a good direction. I'm praying for your healing... expect another miracle! Your life has been a series of miracles, Lady! I'm proud of you.

God bless and keep you strong and healthy, sister.

Joris

[DougV]

Let's make this question more immediate...

If you had to make a choice now that might sacrifice quantity while improving long term quality,

.or.

A choice now that could sacrifice long term quality ibut might improve overall quantity...

Decision now, time frame for future unknown, then what.  And no time to put decision off.

Doug

[MissyMouse]

Gosh, the cat ... I have absolutely no problem letting the cat out ... 

On December 12, 1983 at the age of 23 years I was diagnosed with acute meyolegenous leukemia (AML) which is the most devastating form of Leukemia.   I was on massive huge doses of chemotherapy 24/7 and received about 2 units of blood and a unit of platelets daily.  In the later part of March, 1985 after finally getting to do my very first outpatient chemo round, I became jaundice, my liver failed, my kidneys failed and my heart failed.  I was supposed to be a DNR  patient but my regular oncologist just happened to be in Greece and his new, young partner did not not know I as supposed to be DNR.  The did indeed take heroic steps to save  my life.  I was  placed on a respirator and was in a hepatic coma for 11 days.  Sometime during the course of these 11 days my regular oncologist came back from Greece, met up with my Dad, shook his hand and said "she's made it through a lot of miracles but I just don't believe she is going to make through this".   My Dad was driving to work one day and had such a spiritual feeling come over him he had to pull over on I-95 and write it down .... something just told him that everything was going to be o.k.  Sure enough I woke up from my coma on Good Friday in 1985 and on Easter Sunday (which happened to fall on my 25th birthday that year) I was taken off the vent and moved out of ICU into a regular room.  And here I am today all because a young fresh doctor did not know I should have been a DNR.

I do indeed now have a living will that says DO NOT PULL THE PLUG unless I am over the age of 75.

Here are the little quirks I'm dealing with now when it comes to quantity or quality.

1.  There is  a 7% chance that breast cancer can return anywhere in my body.  My general surgeon and plastic surgeon really want me to go on a hormone blocker to reduce this risk down to 1%, especially since I appear to be a cancer magnet.  I've only seen the oncologist 1 time since this started and he didn't seem to think I would need a hormone blocker, so the general surgeon has asked me to return to the oncologist and discuss this again with him.  My breast cancer was 99% fueled by estrogen and 77% fueled by progesterone.

2.  Most of you know that I was diagnosed with rheumatoid arthritis (an auto immune disease) 2 weeks after I finished my first round of treatment for hep.  They don't know if I got this from the hep, from the treatment or from my mother who also had it.  They are leaning towards I probably would have gotten it anyway, that the treatment just hastened the process.   I can't take the normal drugs for RA because of my liver.  Actually I did take them after first being diagnosed and they think this is what made my liver cross the line to cirrhosis.  So, I take shots of a drug called Humira.  Basically Humira shuts down my immune system to it can't attack itself and keeps my RA from progressing.  The Humira along with Celebrex and pain medication keep me fairly functionable (although I do have to be careful around sick people and with cuts and stuff).   The issue is that there are some studies out there that suggest Humira can cause an increased risk in some cancers, including breast cancer.

3.  I have cirrhosis of the liver and each year that I am alive and walking around with cirrhosis my chances of liver cancer increase by 10%.

So I have to decide whether or not I want take the cancer risk and stay on the Humira  with the confidence of knowing that most of the time I will be able to walk and function normally with just the occasional flare that requires prednisone.  Or, if I want to come off the Humira with the knowledge that I could possibly wind up in a wheel chair and with pulmonary fibrosis like my Mom did.   My Mom's pulmonary fibrosis was made much, much worse because she chose to continue to chain smoke and she died at the early age of 61 from COPD.

Ta da .... that's my story and I'm sticking to it.  LOL   

Mouse

[MissyMouse]

Joris I'm speechless.  Thank you what a lovely thing to say to me.  You've already helped me by showing that SVR is possible.  I always said I wanted to grow up to be like you.  It took me a while but I did get there.


Gosh if I had to make a decision right this very second ... I still don't know Doug.  I honestly think I lead toward duration but then I immediately think that I'm getting really tired of all this crappola.

Mouse

[geow]

Hi Missy,

Don't believe we know each other very well. I was on a lot when I was taking tx. I don't have RA, but I do have OA. As you may know, Interferon exasperates arthritis, or so I believe I remember reading that it does; meaning I made mine worse because of tx. I can remember promising myself I would never do Interferon again, because it ended up taking me 2 years to mostly recover from the 1 year of tx. Pretty sure the tx devoured lots of cartilage in my lower back and knees where I have damage. While my lumbar is not so bad these days, my knees have lost all cartilage on the inner bones, so I now could use knee replacement. I have been fighting weight gain since coming off of tx as I had a huge appetite post tx. I was pre-diabetic and pre hypo-thyroid post tx. I read that tx eats away at cartilage, the pancreas, and the thyroid. Lately for about 2 months my neck has had a muscle spasm which can send me to the bed for a day or 2. I have started physical therapy for it, but it just keeps hanging in haunting me. My only other issue is high blood pressure with a family history of cardiac disease.

Toady I an am preparing for another round of tx, if I can get the financial aid. Even though I swore I would never again do tx , I  have since heard so much about the protease inhibitors in the clinical trials , I am getting psyched to once again let the poisoning begin. Will I have longevity because I chose to do this? Will my quality be less because of it? Should I NOT do the tx and hope I can use herbs to keep the hcv at bay?

Who can answer these questions for me? Why would I want to continue to try?
I continue to try because others can benefit from my experience, especially if I write about them and share them. No one seems to have the answers for me, but many want to continue to hear from me. When I consider all of my wants and desires, and there is still a question, if I can help another, I will.

I pray you will know, that you know, that you know; what to do.

geo

[geow]

Missy,

Today  I was reflecting on this topic, Quality vs Quantity. I am 58, and I am gonna give up another year to tx. (maybe not too bad this time, whistling in the dark little boy). I am hoping if I can get a SVR I will have better days than I now have. I swear that some days the dragon rears it's head, and blows his fire in my body. My joints hurt, and I cannot stay awake, and it all makes me feel like life sucks. But then I have some good days, usually a good many, as the memories of feeling ill subside. As I feel better, my mind queries why I am so far behind in my chores and plans, then the realization hits me, I'm sick. Few friends can realize how it can be, often offering all that needs to be done is to pull yourself up by you boot straps and keep going. Little do they know, how unfair it all seems.
Then I will see some new cure on the horizon. Especially the stem cell research that is gaining momentum since Busch is gone. For instance, I have been told I am a candidate for knee replacement. Knowing tx eats away at damaged cartilage, it seems wise to wait till tx is done. But there is hope for me as doctors are now able to take spinal stem cells, inject them into the area of missing or damaged cartilage , as it helps build new cartilage.
I share the story about my knee, and my hcv with you so you may not feel alone. So you will not feel like you are the only one dealing with sickness. I also know we make others feel gratitude for their good health when we go public, and come out in the open. We show others that one can keep fighting. We also help the doctors learn more. And last but not least, we keep each other company, as we continue to trudge the road of happy destiny.
It is not easy to know when to say no. I said no to the second round of tx for years until now, when the finally approved the new protease inhibitor Incivek.

 I just hope you can feel those of us who stick together in our various illnesses, as we form new families. Ones whom Know How It Feels.
 "we are all brothers and sisters."

Love to you,
your friend
George

[MissyMouse]

Since starting this thread I have seen the oncologist and my PCP, oncologist says try to do without the Humira it I can.  PCP says "there is no easy answer for this one" and when the time comes, me, him and my rheumatologist will make this decision.  I've been off the Humira since last July and  have not been off Celebrex since January 5 in preparation for surgery on Wednesday.  My body hurts so bad that today the answer seems easy for me.   I reflect on what my Mom was like with her rheumatoid arthritis and take into consideration how I feel right this very second .... I want to take the risk and be able to walk and function so I'm really leaning towards going back on the Humira.

On a happier note, I should be having what will hopefully be the last of my reconstruction surgeries on Wednesday.  My 6 month liver ultra sounds shows I am status quo, my 6 months labs came back BEAUTIFUL.  AST is at 23 and ALT is a whopping 8!   Unlike most my AST as opposed to the ALT is what usually runs high for me.  These numbers make me really confident that my SVR is holding.   .  And today I am off to see my awesome gastro man for my 6 month check up.

Mouse

[geow]

Congratulations on your SVR. This is a MAJOR WIN for you. Think I'll spend the afternoon dwelling on it.

Glad I found Ginger Root. Saw it in the grocery store, had no clue what it was, inner voice said to buy it, I did. Looked it up, found out it helps settle the stomach. Tried stopping omneprezole (prilosec), but my esophogitis (gerd) is too far gone. So, re-looked it up to see if I read something wrong. As I went through a lengthy article, found out it was a serious anti-inflammatory. Knowing my Dr, said, "if you respond to cortisone, your problem is inflammation," my curiosity was piqued. In the article, in a clinical trial, people with swollen knees realized a 5 centimeter reduction in circumference of their knees when using ginger root, and a return of the swelling when Not consuming the ginger root. . Thats 2 or more inches. Then I realized, my knees were getting more mileage than usual. I was getting an extra 2 hours on my feet on average. Now I have green tea, with chopped and blended fresh ginger root all day. Yes I add about 2 tbs of honey per coffee pot in the tea, and I love it hot or cold. Use it in my water bottle when I ride bicycles. Moral of the story; arthritis is a disease of "Inflamation," and while I still have pain associated with arthritis, at least it is not as bad as it once was. (That is until I get used to feeling better.) I know it's not much, but it's the best I have to offer.

geo
PS The word Hepatitis means 'inflammation of the liver.' Is it a mistake that after using ginger root in green tea for a month or two, my viral load went from 2 mil, to 700K. I'm sure the bicycling helped too. Maybe even the Milk Thistle, and not being in school with no major stress. Peace,