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DeanCarl

IN MEMORY OF DEANCARL

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This forum is dedicated to DeanCarl, who was the founder and moderator of this forum.

Welcome to the newest forum. I asked Rick if we could start something like this because I found there are a few issues that are unique to those of us who are not seeking agressive treatment or who have decided to stop such treatment. "Outside" issues like hospice care, dealing with doctors, friends and family. "Inside" issues like fear and deprssion. "Learning" issues like living life one day at a time. And probably the hardest issue of all, end of life issues. Anything and everything that goes with living with cancer without major radiation, chemotherapy or surgery. I hope we can provide each other with the support and information to make our lives, no matter how long, better.

And I'd like to welcome, in advance, any caregivers or loved ones who are involved with someone who has chosen not to recieve aggressive treatment. You too have much to give and much to recieve.

Now, don't you folks who ARE getting treatment feel you're not welcome here, because you ARE. We who are walking "the path less travelled" need your support and caring also. Maybe we can teach each other as we go.

Thank you to Rick and Katie for setting this up. It means so much to me.

Dean

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Dear Dean,

What a WONDERFUL IDEA! How nice of you to bring this matter to the of all the board members and request it be a FORUM. GOOD IDEA and GOOD JOB! And of course Rickey was right on it!!! :):) I'm thinking OUR RICKEY AND KATIE'S HEARTS are the SIZE OF TEXAS!!!

God Bless.

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Dean

This is awesome!! I had actually thought about a forum for folks who have chose not to do aggressive tx. (Back when you posted that sometimes you felt like an outsider because of your decision to do no agressive tx.) AND I thought you would be just the one to moderate it!! Looks like you have found "what to do next"!! Wonderful choice......you will be an inspiration to many!!

Angie

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Dean,

I'm so glad you now have YOUR "thing"! Looks like the job is defined by you, not you defined by the job...or maybe it's all one in the same with borders that flow back and forth, the yin and yang..

Yah!

Becky

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Dear Dean,

What a wonderful idea!!! I think there is a definate need here and this is answering that need. From talking with those in the medical world and from people around town, there are many people who decide to "travel this road" with courage. What a great service you are providing!

Soccermom

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Dean,

Well, Whoa!! Good deal all around!!

Now if we could only bottle Dean Carl's wisdom and Beckyflake's humor and sell it to benefit this site...... hmmmm....... :lol::lol::lol:

Congratulations, Dean Carl.

This forum is a welcome addition for all of us.

XOXOX

MaryAnn

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Guest pat mc

Dean:

What a wonderful idea. Everyone's situation is different yet alike. I'll check this forum often. Sometimes it is the simple things, like what to eat or what to expect, that make the most diffference.

..and with your wicked sense of humor not much will get past you. I think you wrote the most awesome and yet polite reply to that fish-oil salesman who posted. ...

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Dean,

Thank you for starting this forum. It is so timely for me since my father is under the care of hospice. He does take Iressa. This is the most difficult time of our lives, this board is such a continual blessing for me.

God Bless.

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Hi Dean,

The forum is a great idea. As we have discussed in the past some of us are on a Path Less Traveled and need to share our feeling, fears and frustrations with each other. Our path does not have the immediate input that doctors can give on how and where the cancer is spreading. We must wait, stop and feel constantly asking if this new pain or ache the cancer weaving its evil webs.

The only contact I have with my doc is a telephone call once a month. She asks a few questions, checks up on the meds and offers any help she can give. We have talked about having a CT scan to see how or where things are going, but I feel it does not really matter. It is going to do what it is going to do physically and I am not going to let it overcome me emotionally or spiritually.

There are not a lot of treatment options for me. First the cancer was discovered in a very late stage and had spread causing two large tumors. Second our only chemo provider here in Guam had financial problems and closed this week referring patients to Hawaii or Manila for treatment I would have been right in the middle of the second or third cycle the onc talked about and sure would have been bummed out to lose the provider after going through all that.

When reading the other forums I am hesitant to comment on people’s postings, since I have no idea what they are going through in treatment. I respect the pain and anguish they feel and admire them for fighting as hard as they are. It makes me hope and pray that when my cancer hits with its full force that I will pass quickly. I have placed a terrible burden on my family in refusing hospital or any life support. My dear wife is the one who is going to have to deal with my passing at home and the specter of this looms over our lives together.

I cherish her support along with the rest of the family. Now it is just a waiting game. If someone asked me what my job was I would have to answer, “well just sitting around the house waiting to die.” But I add the optimistic note, “however, I am still buying green bananas.” Now that I am no longer teaching or coaching I will occupy my time making DVDs from home video we have shot over the years. We bought a new computer designed to do this type of work now I just have to figure out how to use it.

I wanted to travel to Michigan for my father’s internment. The doc said it was my call, but I should be aware that not knowing where the cancer is spreading could end up in a seizure of other medical problem that might strand me in a hospital back in the States. Additionally the fatigue that I am feeling would make the 20 hours of traveling to get there all the worse. So not knowing the status of my illness – taking the road less traveled, is going to prevent me from traveling to Detroit.

Since I “dropped off the scope” I have a lot of bottled up emotions that I am venting now. Good idea for the new forum and it will be good to see how many folks are on this road along with us.

God Bless,

Howard

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Howard,

Glad you found this forum and you hit on a LOT of the issues for those of us who've chosen this road.

Do you have any access to hospice? It's nice to have someone come out, in my case once a week, rather than have to worry about getting to a doctor for every little thing. They have a wealth of knowlage about what I'm going through and what to be concerned about and what not to.

Like you I don't post much about the "treatment" side of all this. But I've found I DO know a little about living life and I try to share that when it's needed. You, also (and I know this from our e-mails and such) have something to share with a lot of folks here, so don't hesitate!

I just went through that "ok... so NOW what?" phase. Like you I am no longer able to do the things I used to do. But I'm finding there's a lot of other stuff that needs doing that I CAN do so I'm concentrating on those. Took a bit of looking, but they were there.

The only thing you said that I take umbrage to is the "waiting game" thing. Waiting around to die? Me? NOT FLIPPIN' HARDLY! I've got things to do, places to go, and people to see. I've kinda go the attitude that this is an early, intense, and prossibly short retirement! :)

Anyway, don't stay away so long. Keeping all that stuff bottled up doesn't do anybody any good.

Dean

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Howard,,

I was so happy to hear from you. So happy. Darn I feel like a mom lol--wanting to remind you that when you leave for a bit not to forget to let us know when you plan on retruning--lol.

You are so right about the worse thing being the burden we feel we are. I feel like I am groping around looking for answers and not knowing where to find them but from others on the road.

Pls don't forget to come back here and "vent" from time to time. I feel like I am but a child, (and aren't we all in the face of the word "forever". ) So small, I feel. So inconsequential at the scope and beauty and love of this world. I also hope for a better place. But, I too, am buying green banannas. I don't want to lose the sight of my beautiful children's faces. I don't want to miss their children's faces. I am full of such contradictory feelings.

Every ache or pain sends me reeling. I feel mostly strong but one thing that I have learned coming to the b oards is that it can change quickly? It is hard to fathom that though. Is it possible to really understand that concept. I feel I am me, only a little doubled-over (lol) and walking a little slower and shedding more tears than I knew I could. But it beats the first weaks of total numbness followed by some periods of anger. Now I seem to be feeling lots of things, including joy. I think that is good. What do you think?

I am sorry to hear you are getting weaker? IS this a new thing? Did it come on slowly or noticebly change?

Thank-you Howard. God love us all.

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Howard,

Howard, I was shocked and saddened to read of your father's death. How hard it must be for you to grieve so much all at once. I know you wanted to go to Michigan, but I know that everyone understands why you have not.

I believe as you believe, that our loved ones are with us always.

I just replied to your other post under "sticky" in Dean's new forum., too before seeing this one.

I loved reading about your visit with all your children. It was bittersweet and brought tears and smiles to me.

Your children love you so much, I know. My dad raised three of us for a couple years by himself after my mom died when the three of us were 9 5 and 3. When my dad was sick, we used to sit around and talk about those times so fondly, and also with so much compassion for ourselves and the pain the pain only the four of us shared.

Now I sit and think about my own dear children and the good times outweigh the unhappy times. I hope it is the same way for my children. That they mostly remember the love I have for them and all the times we were as one.

Your second son, he wants you to know he is going to be ok. And I believe he will be. Your oldest son, I think, as an eldest child, feels responsible for you and for the future. (I am the oldest child and I felt responsible as did the oldest son in my family.) He is probably a little afraid of that right now. He loves you Howard, and everyone loves and grieves and faces things differently than anyone else.

See me, I am crying my eyes out. For you and all of us. That is what I told myself I can do for one hour and after that I have to stop.

But think of the lovely memories you made with them. Guam was probably painted with love by the time they left.

Keep those faces in your thoughts. Howard, they are still with you, your lovely children are with you now.

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Hi Elaine & Dean,

Thanks for the words or encouragement and condolences. I know that my last postings reflected my recent case of frustration, anger and passive acceptance – feelings that haunt us all.

As you Dean has so often said we can’t let this disease conquer us. To fight we must focus on the positive things we have going for us and draw our strength from that. As I have found lately, this is easier said than done.

I allowed myself to fall in to the grasp of depression and self-pity and am still fighting to pull away. Staying involved is the key. No matter what it is we are doing or are capable of doing, we must stay involved cultivating the positive forces in our lives.

Did you ever hear the stupid reporter joke where he asks; “Well besides that Mrs. Kennedy, how did you like Dallas?” Given this preverbal inference here, we have to be able to answer to: “Well beside the cancer that is killing you how are things going?” It’s the “how are things going” part that’s important. We have to be sure that things are going JUST FINE - that we are getting the most out of each breath that we take. The first part is a given – the second part we can control and is the key to fighting back.

God Bless,

Howard

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Howard,

Good to hear from you. I think the key words to your latest post are "staying involved"--. I know how imprtant that it, but so hard to do, now. I long for my job, something that I know would occupy my time and my thoughts. I know how pleased you must have been to grade those papers a week or so ago. I long for papers to grade--lol. ANd as an English teacher, that shows just how desparate I am lol.

Howard, when you find the golden key to all of this, let us know. I don't know how to stay involved, it brings such bittersweet thoughts and tears, knowing the future. Actually, not knowing the furture does the same, or maybe the two are synonomous. What a mixed up bag this whole thing is.

I feel blessed though to have been touched by you and others--there are some things that miles and miles can overcome. Things to do with the heart and soul.

Elaine

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