Frustrations

[kimblanchard]

I'm posting this because I think a number of you will agree with me totally, some partially and some not at all, but you will have the sense to say "she has to walk her own path - who am I to judge?"

In response to my update from last night I got some interesting e-mails. To a group of people I have met on-line and set up as a separte "group list". I no longer will be updating that group.

Today I got this email from last night's post...

Shannon dear.........I have so admired the huge battle that you have done for the life of Mike. You have fought the good fight. Now, it is clear that Mike is not improving. I am not suggesting that you and Mike give up the fight, but rather focus your efforts on making the end of Mike's journey on this earth a graceful and peaceful one. One, in which his loved ones can surround him with their caring and one in which he feels comfortable to "let go" and slip from this world into his forever home.

There is little that the medical community can do at this time. Mike, with all his pain and pain medication is not in optimum condition to decide what steps to take next. A tiring trip to Tulsa may not be the best way if pain relief is all that is being discussed. The trip to Tulsa will task Mike's strength so terribly.

You know that I have been behind you 100% and have also watched for the miracle of healing. Now, I think that you need to stop your frantic searching........not give up.............just refocus. Let Mike be in his home, in his bed or on his couch, surrounded by his kids and grandkids.......and let Love surround him and make his leaving gentle and sweet.

If I were dying, I would want to go just that way. Having my grandchildren cuddle next to me in bed while I go to see my Lord is more than I could hope for. I weep for you and Mike. Mike has been one brave fighter. He will fight as long as he can. But at some point, he needs to rest. I am so worried that I am causing you more pain. You have had more than enough for a life time. You have been a warrior........I am worried that you will be swinging that sword in thin air and fighting a shadow. You and Mike continue to be in my prayers. I am not giving up on your Mikey.........I am praying for peace in his soul and strength for his body and freedom from pain. I know that God is blessing you and giving you your full portion of faith and strength.

Love-M

Now this is the SAME woman who earlier wrote me this one only one month ago....

Atta girl! There is always hope..... I think that people have, through the marketing of the devil, bought the message of hopelessness.

The devil hides it under the guise of "common sense", "acceptance", and "getting on with one's life." It is so common, that a person who has hope, and refuses to give up is considered a nut case!

Even the doctors who are in the healing business are too shell shocked by all the lies of the devil, they can't even conceive the thought of healing and health.

I encourage you and Mike in this fight. If life is precious.....then fighting for life is a GOOD THING!!

There is plenty of time for grief after a person dies. But a funeral before there is a corpse in not usually a good thing. LOL

Mike is not a corpse!! He is alive and kicking more than a lot of people who will be dead today yet!!

I am praying for you and Mikey--for total health of the body, spirit and mind!!!

Be encouraged.

Love---M

Go figure???? We still look at "medical science" and decide to give in. (M is a nurse), looks like when the going gets tough her faith got going.[/i]

And get this e-mail - from a doctor's wife...which explains a lot

Dear Shannon:

I have been receiving and reading your emails and I thank you for keeping me up to date. I know this is a difficult, stressful and tiring time for you. I was concerned about your assessment of your doctor's visit yesterday. A case manager in a hospital does just that, manage difficult cases and coordinates all the care that may be necessary. I really doubt that it had anything to do with litigation; I think you misunderstood.

I hope they can get Mike's pain under control soon, that's so hard on him. I see from this morning's email that you're considering a return to Tulsa if they can get him in condition to travel. I know Mike says he'd like to go back but he's getting weaker and I wonder if you're absolutely certain you want to undertake that long and difficult a trip when he is so ill? I can't help but think how far away you'll be from your family and friends and if something should happen while you're away from home it would be a nightmare for you.

Mike's primary care appears to be pain management and the hospital he's in can certainly handle that and he wouldn't have to take that long tiring trip. Has the hospital or your doctor talked with you about Hospice? They do a wonderful job with pain management and that way he could be in the comfort of his home surrounded with his family and friends, all people who love and care about him.

Hugs to both of you!

P

And here is another e-mail receieved today....

Shannon,

This is just too much. Seems to me that with the increase of pain meds and the pump not properly adjusted that the pain is getting out of control for Mike.

If theres no fluid for them to remove why oh why is Mike getting so puffy? He isn't peeing because why?

His creatine level (which is kidney level function) is .9................well Shannon thats when they admitted Steven to the

hospital. They said anything over a .5 and the liver will try to take over all the other functions of the other organs. That meaning that Mikes diseased liver is trying to compensate for the kidneys and isn't doing to good of a job.

Sounds like the local hospital is concerned with pain management only. They see the stages of cancer and realize what their job is. To control pain. You guys are really going to try to go to Tulsa again? I realize that you feel that you NEED to, but is this what Mike needs? I don't recall that they did to much last time. Yes, they did testing, they gave you peace of mind. Shannon, your family, friends, and church members can do that in your own home. Yes, they installed the pump, which doesn't seem that its working to terribly good.

I am worried about you and don't want to get blasted either. What are they going to do for Mike in Tulsa?

Yes, it is a respite for you and I realize how much you need that. To face your soulmates death is HARD. Shannon, I do understand that you want to do EVERYTHING that you can. Please, take a step back and look at EVERYTHING.

This has been a hard email for me to write. I know how can I even say anything to you when my soulmate is sleeping in the next room and doing good so far. How can I even ask you to step back and look at things. I can, because......................you need to. You need to face what God is dealing you. It isn't mortality, you have that.

My love and prayers to you both

Karen

Wanted to share these with you. I've decided no more "updates" to these friends grannies. They do nothing to encourage...just diagnose and evaluate situations they have NEVER seen in person. In fact, I might not update anyone anymore. I refuse to have my fears and my despairs "feed" by unknowing persons. I'm convicted by God to do what needs to be done. And I'm covicted that if Mike is meant to go to Tulsa...God will let us know.

I have a few really supportive friends...I don't need to explain or re-clarify my position constantly! It's between Mike, God and me. I'm not a fool, I'm not dillusional. I'm not in denial. I'm walking by faith and not by sight. We may not get to Tulsa this weekend....but that doesn't mean I'm suppose to give in and NOT go. The presumptious attitudes these women have....I'm glad they aren't in charge of Mike's care....he would be dead by now.

I'd rather people say nothing at all that to try to "undermine" faith. And God is prompting me to still take Mike to Tulsa as long as he can withstand the trip and he is still willing.

Faith is NOT giving in what the going get's tough. Faith is getting going when the going gets tough! I find it intriguing how people think they know what is going on with Mike better than I do...better than our doctor does.

The shadows are falling around me....sometimes in the form of some well meaning friends.....who advise me to give up or to call in hospice. I need the light of people who take setbacks with the purpose intended...to test our faith...to see if we can keep our faith even in overwhelming odds and the appearance of defeat.

Funny how people can call upon God but when the rubber hits the road - they cave in at the first sign of weakness.

Mike is still fighting...still strong...but I guess some people have decided (via cyberspace) that Mike is clearly not improving. Funny they can diagnose failure from 2 thousand miles away. And they have two crucial facts WRONG. Mike is peeing on his own. The reason he his retaining water is because he is low on protein and his liver is "compromised" (but not in failure). The pain pump isn't not working correctly....we were just turning it up too slow to keep up. Tulsa said we would need SEVERAL adjustment and they were "assuming" (bad call - but they did it...that that pain specialist here would increase the dosage EVERY day, not every OTHER day.

Some very well meaning and loving people just say too much ....and they HAVE fallen prey to fear. Know what I mean? I walk by faith - not by sight. If God intends for Mike to make it back to Tulsa....Mike will be the one to make the decision to stay or go. It might not be in our timing (this weekend) but if God intends Mike to go back....I'm willing as will Mike.

Why is it people fail the test of faith when certain things "appear" to be? My spirit has been convicted from the very beginning....Do not be deceived by appearances. I let God lead me.....not by what I hear or see.

My granddaughter learned a song last VBS.."I'm gonna look that problem right in the eye, and say my God's bigger than you are. I won't be scared by what I hear or see, my Lord takes care of me!"

Good enough for a 4 year old....good enough for me!

I thank God for those of youl here, for understanding faith and fear and how we HAVE to walk by faith.

Hugs.

Shannon

[SandyS]

Shannon -

PLEASE don't stop updating us!

Sometimes people say things poorly - even though they mean well.

You've done fine so far (BETTER than fine). Keep doing what you're doing. Just make sure you listen to:

Mike

God

Yourself

In that order. (And please, I don't mean to disrespect anyone's religion by putting God second. MIKE is the patient, and his desires must come first.)

I'm here for you - whatever you decide.

Get some rest..........

Hugs and prayers,

SandyS

[Andrea B.]

Shannon, please don't quit posting updates! I enjoy reading them and they always provide me with hope and inspiration.

I think people sometimes say things out of ignorance or they may have the best of intentions and don't know how/what to say. I have "close" friends who have made comments that make my jaw drop. However, if I had people who only knew me through cyberspace making those comments I would cease to communicate with them.

You and Mike are amazing people and you know what is best. Please do keep us updated. As always you are in my prayers.

[daggiesmom]

Dear Shannon,

You have been through so much. I am praying for you. God will guide you.

joanie

[rayroy]

I concur with the above and I also am inspired by your faith and strenght to help mike. I hope you keep us updated as much as you can. There is always hope!

[Tracy]

Shannon,

I agree so much with the others....your posts are inspiring. You are not a quitter ,its clear in your posts just how much you want to fight....and fight you should! If you were walking down the street and a random stranger came and slugged in the face you wouldnt just drop down to the ground and hope they dont hurt you too badly! Of course not, you'd get right back up and slug them even harder then they hit you.

My family worries about me. They think that I am getting my hopes up too high about my dad beating this. Well you know what.....they will just have to continue worrying or come to realize that a slim to none chance of beating it is still a chance! Dont let anyone tell you when or how to fight, you just do what you feel is best for you and Mike

Remember....it's not over til the fat lady sings.

I hope you continue with your postings and I will say a special prayer for you tonight.

Tracy

[gail]

Shannon,

Here was my reading for this morning. I , of course, was thinking of myboss, but it reminded me of what you were saying.

I had a 37 year old friend with 3 young boys, in the hospital with aggressive breast cancer. The doctors in the hospital were not open to new ideas. They "suggested" hospice. I happened to be visiting when that report came in. Karen, her husband, and me. I wanted to melt in the wall. She looked at me and said "How can I give up?". I looked at her and said, "It's your party, you can do anything you want."

When my father in law was dying 15 years ago, I was very angry with the family for their submissive approach. After he died, I saw Elizabeth Kugler Ross's book --Death and Dying-- (I think). I remember being stunned to read the patient has the right to call the shots. (You mean I could be wrong?)

Today's thought is:

Every artist dips his brush in his own soul, and paints his own nature

into his pictures.

-- Henry Ward Beecher

Our perception of any experience, even the smallest detail of an

ordinary event, is quite exceptional. No other person will share our

particular vision. Frequently that results in arguments. The need to be

right is a common affliction. If only we could appreciate the richness of

sharing and combining our views.

Because of our age, we may assume we have more wisdom than others.

On occasion, we will. However, we have something to learn from all

souls who cross our path, or they wouldn't be there. Understanding this

is real wisdom.

What a dull world this would be if we all shared the same perception of

every event. There would be nothing to discuss, no opportunity to

expand our minds, no reason to interact at all. Instead we are blessed

with opportunities for conflict and growth, the deepening of

relationships and character development, choices, and decisions. All

because we each see what we see.

How I see an experience today is unique but neither right nor wrong. I

will remember the same holds true for all my friends, too.

* * * * * * * * * * * * * * * * * * *

Today's meditation comes from the book

Timeless Wisdom by Karen Casey copyright 2001

I will send warm fuzzy wishes your way. I am off to a Relay for Life tonight.

[Ry]

Shannon, you are so right to cut these people off from updates. You need to get all the negativity out of your life that you can. If they can't be supportive and positive OUT THEY GO! You need only positive energy right now. We are all pulling for you and Mike. Hang in there and know that all of us in the "wives club" are here with you.

[Terrie]

Shannon -

Please, please, don't let anyone question your decisions or your faith. You know you have been an inspiration to so many of us and show a strength of your faith that I, personally, have felt that strength to help in my own battles.

I thank God daily for the gift of your example, and pray for you and Mike. I know you will follow where God leads you - and battle your heart out with Mike for this precious gift of life he has given you! So many of us are right there by your side - sending up those prayers and placing our arms around you for that battle!!

Now on to Tulsa - time for the next step! God bless you both!

Terrie

[Fresca]

Shannon-0

I think you are doing the right thing. If Mike is willing and able to go to Tulsa, THEN GO!!!!! Do not let anyone stop you. You do what your heart tells you to do.

I pray for you the wisdom you need for all that lies ahead. I will be praying for comfort and peace for you too. God Bless you Shannon. You are one strong woman. (God helps you be that way)!!

Rana

[Karma1976]

I can only reiterate what others have said. First off, those emails???? What pretentious pompous people. first off you are such a strong willed determined person, what makes them think laying a freakin guilt trip (cause that all it looked like to me) on you is going to change your mind??? MIKE wants to fight, and with that said you ARE honoring mike's wishes! so who are they to comment, and basically say give up for him...then he will loose his fight. THAT happened with my dad. the doctors, and some family members just were like we are done and you know what my dad WASN'T that is the thing. just give in to what is inevitable??? ummm, how can anyone say that....not making an option is what makes the cancer inevitable. My dad was so upset and i mean that thoroughly upset him when they told him they would do not more for him, he couldn't get a freakin word out he was so upset cause the doctor said you have about 2 weeks....what in gods name does a person DO with that info???? I came into that room and said get all your scans and reports we are getting a second option and he smiled and said ok exactly what do i have to do. if that was a man who was in pain and wanted to give up and lying in his bed with his children laying next to him (sorry but that part kind of disturbed me as to what that lady said cause she apparently has no clue that death sometimes is not that pretty and to have some young children watching granny pass away isn;t always peaceful, but hey that is her call) but my dad didn't want that if he was hurting so so bad and just wanted to pass away with his "dignity" no, he was still ready to fight fight fight and he was in pain, pain, pain. he wanted the day when he didn't have to have that thought of passing away! As far as the pain management, i honesly think that is what screwed my dad. they decided to put a PIC as they called it in his arm for pain management so when they decided to move him to hospice cause that is where he needed to be (again 2nd opinion was in the works) stupid mass general didn;t give the place the "key" as they say to it so he was in pain and without his meds for a whole day and then the next day he took the turn for the worse and even my mom said it, she said now i am not saying he would have lived for 10 years or even a year BUT i honestly think that whole mess up set him into this, cause the day before he was fine. ANd he was i can attests to that. ALL his functioning was perfect, he wasn't in and out he was like you or me in ever way except he had some cancer. i think the screw up in the transfer jogged his system to what ultimately just set the situation up for him to turn real bad, like a shock to his system.

So you know what Shannon! ignore people, they have no idea!!!! you are not doing anything wrong by fighting. I also remember the doctor saying you know it isn;t giving up going into hospice? oh well it is when the man wants to get a second opinion before putting him in a place where now treatment isn't an option anymore??? I am here for you Shannon and will back you up all the way!!! fight the good fight!!!!!!

[kimblanchard]

Shannon

You have to do what is best for Mike and you, no one else. God will guide you to the best decision and you will know it. May I ask you WHY were you emailing this particular group of people? Where they encouraging in the past? Do you know them? What are their qualifications? How did you meet them? By emailing them I think you gave them permission to give their opinions, that is just my humble opinion. I do not believe I ever read these types of responses on the LCSC message boards to your posts, NOT EVER! I do not believe our members would post these types of opinions to you or anyone else, they are not there with Mike they do not know first hand his condition. I would cease and desist all communication with whatever group you were corresponding with, they sound like bad news to me. Why don't you just continue to post on our boards where you will get encouragement and prayers?

I know you and Mike are going through the worst times and I for one am praying for you both.

Bess B

[Connie B]

Dear Sweet, Adorable, Loving, Kind Shannon,

MY TWO CENTS: You need to NIX your Grannie Group!! They don't have a CLUE my dear!! People are amazing!!! Somethings are just better left UNSAID!! But, not everyone gets that!

You and Mike are doing what YOU AND MIKE want to do and that's what is MOST IMPORTANT HERE!

Much love and SUPPORT to you and Mike.

Warm and Gentle Hugs,

[Remembering Dave]

Shannon and Mike, you are some of THE strangest people I know. Strong people fight. Do not give up, fight hard and ignore the naysayers however well meaning they may want to be. My prayers are with you and Mike.

David C