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Where's the handbook?

NoQuiSi
Posts: 106
Joined: Sep 2008

I really wish there were some type of handbook that would help in dealing with cancer, with a list of "How To's"...but if there is, I sure can't find it. I'm usually supportive of everyone else in any circumstance, especially cancer related, but I seem to be all out of juice right now. I don't usually reach out to others but instead, just deal with it myself... I don't seem to be doing that very well right now. Guess I figure, what have I got to loose? I've already lost so very much. (Third time out with the cancer)

I'm not one for self-pity, as a matter of fact, I loath it...it's a waste of precious time. I don't pity myself...I see others with their own stories and my heart goes out to them. I think I just feel 'worn down'. I'm having a difficult time in dealing with what's happening to me physically...looks like it's developing in my pancreas. What I do know for sure is that it's changed and my doc told me when that happened, there wouldn't be much he could do because of the type I have (B-cell). It's been indolent, up until now. I'm allergic to everything and can't tolerate chemo.

Thanks for taking the time to read this.

zahalene's picture
zahalene
Posts: 680
Joined: Nov 2005

Cancer is such an individual thing in each of us (and even in each case within us - I am a 3x time survivor too) that there can hardly be a handbook with 'do's and don't's) listed in black and white. However, this site comes as close to giving useful and pertinent information and support as any you will find anywhere.
We all talk about our various experiences and what worked and what didn't and how we felt and how we dealt, the whole ball of wax. We learn from each other and lean on each other and rant and rave as needed. Then we hug each other and do it all over again.
That is the formula that seems to work well for us. I hope you will open up and let us get in on what is going on with you and before you know it, someone will be learning and leaning from what you offer as well.

NoQuiSi
Posts: 106
Joined: Sep 2008

Yep, I know there can't be a handbook, I just wish there were. My situation is, I've just recently had a very good friend who's stepped back from me cause she just can't see me like this (I'm not looking too good these days, apparently). She lost her brother to cancer not too long ago so I can't say as I blame her.

I had a very good friend who had cancer as well. We supported each other in our battles with it. She lost the battle last December. Of the two of us, I figured I'd go first but it was her (was her second occurrence). She had a little girl and a husband who needed her...I have no children and am not married. She was such a special person, loved by all, and I miss her very much.

I lost my dad to Multiple Myeloma eighteen years ago, after caring for him (I had the second occurrence of ovarian cancer at the time), so I'm familiar with loss but this time with my friend...well, I just don't know how to get through it. There's more to my story but I'll have to continue it in a second post cause there doesn't seem to be enough room in one to allow it.

NoQuiSi
Posts: 106
Joined: Sep 2008

I've been in an indolent phase with the B-cell but my doc said when the cancer turned more aggressive, there wouldn't be much he could do. I'm allergic to everything and can't tolerate chemo. My doc said when it turned, it would be very fast for me. He said if ya gotta have cancer, mine is the type to have cause I'd have longer quality of life. The cancer appears to be changing now and I'm having a difficult time with what's happening to my body. I'm in a lot of pain more often now (the area of my liver, which I have tumors in but they've been benign so far).

My CA19-9 levels have been elevating periodically for the past two years and my liver and spleen are enlarged...so it looks like possibly my pancreas is becoming involved. My doc spotted something in my blood work as well as two other docs and I've been told it's something to do with the cancer. My doc wanted more tests so as to try and have some type of plan before he told me but a new nurse inadvertently spilled the beans to me about it before these new tests. There's other issues going on and I'm feeling over-whelmed.

zahalene's picture
zahalene
Posts: 680
Joined: Nov 2005

There is just no figuring out why some of us go and some of us stay a bit longer. I think we just need to try to learn what we can from each experience, both our own and those of others, and grow into the strongest, wisest people we can become while we are here. Dwelling on the whys and what might have beens only wastes our available energy which is so much needed in this battle.
I am sorry you are experiencing all these complications and I pray for the best possible outcome for you. Please keep us up to date with your situation and let us help where and how we can. Hugs.

NoQuiSi
Posts: 106
Joined: Sep 2008

I know you're right in what you say...I just miss my friend so much. Thanks for your compassion and understanding. I think I need to have contact with others like me who are fighting the battle or have dealings with it. It's just so very hard for what few healthy friends I have left to understand, it's a different world from theirs.

They don't understand where I'm coming from and I have to try and hide it (my illness) so much so as not to bring them down or anything. I usually have a better attitude but, can't always be a good-time gal ALL the time...and I try to do the best I can with the way I look right now but I guess I can only do so much with it.

My mom and I were told by my sisters' docs that she can't last much longer (C.O.P.D.), so we're dealing with that too. My brother was injured during hurricane Ike, so we've had that to go through as well. I guess I just feel over-whelmed right now and feel alone with it. I really appreciate finding this forum and hope I can be helpful to others, in time, if I can dig myself out of this hole I'm in right now. Thanks for the hugs and hugs back to you.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

If you have not yet done so, consider looking into the chat room on this site. It is a place where survivors with all types of cancer come together along with caregivers to talk about their issues, their successes, their failures, their fears, and their solutions.

More important, perhaps, they (we) talk about life with cancer, and life AFTER cancer. When you are in the mood just to chat with someone who has been there, I recommend it highly.

Best wishes with your efforts!

Hope and humor!

Take care,

Joe

NoQuiSi
Posts: 106
Joined: Sep 2008

Already done, lol...I checked into the chat and have met some wonderful people there. Coming to this site was one of the best things I could've done. Thank you so much for responding, Joe. When my hope was growing cold, ya'll warmed it right up and I'm very grateful.

Thank you all so very much!
NoQuiSi

terato's picture
terato
Posts: 384
Joined: Apr 2002

NoQuiSi,

I went to the library and got a medical book published in 1970 which said that my specific diagnosis suffered a mortality rate of 70%. When I confronted my oncologist with this statistic, he immediately asked for the publication date of my reference. Upon hearing "1970", my doctor said, "A lot of progress has been made in ten years!" He then acquainted me with more contemporary data indicating that the mortality/survival statistics had pretty much reversed themselves in a decade. Even with subsequent metastasis, my "numbers" got better, and so did I. In April, God willing, I will celebrate my 27th cancer free year, and, if you have read some of my other posts, you know it has nothing to do with my "positive mental attitude", (I think I am kept alive just to irritate my ex-in-laws!)

During the six years that I worked for the Leukemia Society, I saw similar dramatic turnarounds for Hodgkins and childhood Acute Lymphocytic Leukemia patients. Thanks, not only to improved diagnostic and treatment technology, but to the internet, permitting the immediate sharing of successful treatment protocols among treatment centers and research institutions. "Yes, Doc, a lot more progress has been made in the 28 years since!"

Love and Courage!

Rick

NoQuiSi
Posts: 106
Joined: Sep 2008

I appreciate your post, Rick, and congrats on your upcoming 27th yr of being cancer free! Yay, another one for OUR side! I've gotta admit, my attitude is better than it was when I first posted this thread and ya'll have been largely responsible for the improvement. I do appreciate the information you shared but I should probably explain, it's not for lack of available treatment options that I've gotten the prognosis I have, it's because I can't tolerate the ones that would help me. My oncologist was excited about trying Rituxib with me but found from a health perspective, I can't qualify for the protocol. I'm currently with a research center which I feel I can get the most up to date protocols offered to me, whenever they do apply to my case. I know advancements are being made all the time, in the area of treatments, clinical trials and such, and I'm so very grateful for that.

I do have to respectfully disagree with you on the issue of attitude, however. In my experience, it can make a big difference. I know that, as long as my dad kept on fighting as hard as he did, he was able to stick around but when he grew tired of the battle (and I'm not talking about the temporary ups and downs of it)...he'd pretty much just given it everything he could and that was when he passed. I also think it can obviously make a big difference in 'quality of life'. I'll mention as well, that my friend fought to the very last second and she still passed...I do also think that when it's our time, it's just our time, in some cases. Again, thanks so much for helping me in this forum and in chat and I hope I can reflect some of that encouragement myself, to other members of the forum.

terato's picture
terato
Posts: 384
Joined: Apr 2002

NoQuiSi,

I wanted to add that the cosmetic surgeon who reshaped my lower abdomen in 1994 is himself a pancreatic cancer survivor! As you can read, Dr. Lack adds new meaning to the term "survivor". I prefer to call him a "cancer thriver"!

http://www.clickpress.com/releases/Detailed/13922005cp.shtml

As for me, it is said "The good die young", so, I will live to be 100!

Love and Courage!

Rick

NoQuiSi
Posts: 106
Joined: Sep 2008

Thanks for the link and again, thanks to you as well as to the others for the encouragement...much appreciated! Yep, I do believe Billy Joel said it best, the good die young but, I believe some (like you) stick around to grow into old farts as well. I'm certain you'll make a great old fart, Rick.

Love, light and laughter to ya' as well as to all...

~Su na le i-No Qui Si~
(Morning Star)

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I'm so sorry to hear that you have had a bad report and can certainly understand being worn down. As surivors on this road called 'cancer' we go through many hills and valleys with it all, sometimes feeling on top of the hills and often rolling into the valleys seemingly cut off at the knees by bad reports and negative results from tests and procedures. At those times I have looked to my faith to help me through and it has never failed me. Prayer works, big time, prayer groups are even better, I was brought back from the Pearly Gates by a prayer group, I know that for sure. I will keep you in my prayers and by the sounds of things you will have many others on this site praying for you as well, seems as if you have been giving of yourself to others for quite sometime with a kind ear and comforting word. Maybe it's time for you to reserve your strength for you a little more and when you are coming up out of that 'being worn down' valley you can reach out again a little more. That song 'Turn turn Turn' comes to mind. God Bless and hope to talk to you soon.

NoQuiSi
Posts: 106
Joined: Sep 2008

I really appreciate what you wrote. I do hold onto my faith, as that's the only thing that's gotten me through at times. I go next week for test results and while I do want to know, I hesitate too. I really hope for a GOOD change but it's just not looking that way right now, from a perspective of health status.

So, I'll just take it a bit at a time and enjoy the next week of blissful ignorance until I go to my oncoman appointment. Then we'll see what he has to say and I'll just figure out how to deal with it. Thanks for the prayers and yes, I know which song it is that you mentioned (Turn,Turn,Turn)...it's very appropriate.

God Bless to you too, Blue.

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