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I feel so different

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I love coming to this site because people are truly my friends, but lately I have felt out of place. Yes David has head and neck cancer, but the plasma cell leukemia is ruling our lives right now. The doctor came in today with a new chemo regimine for after Christmas and it doesn't include Cisplatin any more so none of the chemo agents will be targeting squamous cells. I asked the doctor and he said David only has a 10% chance of dying from the head and neck cancer in a year, but will most certainly die from the leukemia if we don't focus on that. I read everyone's posts and I am finding I am having a harder time replying since everything went off course. Yes he had stage IV BOT cancer, had the davinci robotic surgery to remove it. Didn't have a neck dissection, but had a lymph node removed. Only had 14 radiation treatments. So I often don't feel I can give advice, because our experience has been so atypical. Everyone has been so helpful and supportive to me and I don't feel like I'm doing my part on this site. I just wish things were different.

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

based on the rarity of your husbands cancer I would imagine there is not a forum you could go on, correct? And since we consider you family and understand your situation, you have no need to feel you do not give back. In fact I would say you have given us plenty. You and David are a "love story" in action ....it is refreshing and heart breaking at the same time...and we feel close to you....

Your love for David and your strength as well as David's strength do give back more than you can imagine....I just feel bad you have no forum with David's type of cancer you can go too (assuming I am correct).

Best,

Tim

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

No one seems to know anything about this cancer. The leukemia forums don't get it, the multiple myeloma sites, most have not heard of his cancer. I don't have anywhere to ask questions, even the doctors don't know much. Our oncologist went to a international conference just to get some advice on Davids treatment. I was checking the bone marrow transplant register. MD did 231 BMTs last year and only 4 were plasma cell leukemias. Most likely those were secondary late stage multiple myeloma patients. There was only one plasma cell leukemia transplant done in Kentucky. Talk about feeling like an alien. Even in the BMT unit of the hospital we are aliens. We have had at least one nurse not know how to use Davids PEG and got meds all over the bed. They also weren't prepared for his extremely dry mouth and stringy mucus. The nurses have told us he is their first plasma cell leukemia patient. So I often have given the nurses information on both of Davids conditions. Its scary when I know more about what they are working on then they do. I just don't want to bog down the forum with my random problems. This is such a great forum and I guess I just want to be able to give back in some way. Thanks Tim

Vee1
Posts: 59
Joined: Nov 2012

you have no idea how important you are to me. I read your every word and you teach me. You remind me of what really is important. You mentor without knowing it. Believe me...you ARE doing your part on this site.

Never doubt that for one minute.

Sometimes the advice a person needs is not about a chemo-radiation-surgery treatment, but about love and life.

...And that is what I learn from you.

Thoughts and prayers...
-V

phrannie51's picture
phrannie51
Posts: 3730
Joined: Mar 2012

Your "giving back" comes from a different place than chemo and rad treatments...it comes from the heart...the care and devotion to a loved one. Don't be so hard on yourself, Vivian...you are tucked deeply into our hearts...minds....and pockets....and there you will stay.

p

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

LOL, you aren't expected to give back, it's an unconditional relationship we offer you.

You "give", by allowing us to offer you support, thoughts, prayers, and sharing...

When those times come that you can share something, you do.

Just concentrate on you, and your family right now..., we are OK, we want you to be OK also, along with your beloved hubby.

You are doing your part, you help us to help you, which also helps others....

Some of those others might just be people that may not be comfortable putting it all out there like you do...

So they can get answers and support through your posts and replies...

So in that sense, you are giving back, though you might not have even realized it...

Best,
John

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

He took the words right out of my mouth... You had better stay here. You know you will gain strength through this H & N forum. We are all here for you. Your NEVER alone.

CivilMatt's picture
CivilMatt
Posts: 2964
Joined: May 2012

Vivian,

I’ve never met a more compassionate person than you. You have proven yourself over and over again to be an asset to any forum and quite frankly you and David are more than welcome here. We embrace the jubilant with joy and tragic with sympathy and feel every bit as heartfelt for you and David.

Best always,

Matt

Ladylacy
Posts: 481
Joined: Apr 2012

You are an inspiration to us. Your strength is great. I look every day for a posting by you and am hoping and praying for the best outcome.

I know what it feels like to not be able to find someone or a site with the second primary cancer my husband has. Actually I could say his third cancer. First diagnosed 9 years ago is polycethmia vera, many don't think of it as a blood cancer, but it is and one that can very well turn into a form of leukemia. Then laryngeal cancer and now cancer at the cervical of the esophagus, not operable.

Well we haven't had the problems you and your husband are experiencing, I wonder if I would have the strength, patience and compassion to do what you have done. So don't ever think you are not doing your share on this site because you are.

Best to you and your husband

Sharon

yensid683
Posts: 229
Joined: Apr 2012

You have no need to feel different. We ALL are different. We all came to this site with questions, fears and the need to connect to others facing this awful disease. How can you think that you are not offering help to anyone?

I've come to understand that God brings challenges to our lives, some harder than others, but he also sends us help - it's up to us to figure out what that help is and where it comes from. It is also up to us to help others and while you think you're not here to offer help to any of us, you are, just by the example of the love and devotion you have for David, you help every one of us.

God led 'us' to you, God led you to 'us', we're here to help you.

I've said it before and I'll say it again - grab on to our hands, we won't let go....

P :-)

luvofmylif
Posts: 344
Joined: Sep 2012

I don't feel like I have helped others on this site, so much as I have been helped and supported. So, it's not just about about the technical knowledge about living with this particular type of cancer everyday, but also about the care and support of others. We help to lift eachother up when they need it and vice versa when we need it.

Just keep doing what you are doing and grab support wherever you can get it. We all care about you and David. But, most of all, our heavenly Father cares. All love and care on this earth comes through him.

Joan

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

hardest for so many people to do is ask for help.

that is why so many of us hang out, we have accepted the fact that one of the reasons we are still walking is so we can go help others with their fight either as a survivor or as a caregiver.

totally i am here unconditionally to help when i can with the experience i have been thru and the knowledge i can remember.

we are here to help, please continue to ask for anything and we will do our best to help as best we can.

hugs

john

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

my cancer was on my epiglottis..that was removed by de vinci robot along with lymph nodes November 2,2011. I don't really have a forum to be on either, I've saw a few post about epiglottis but have never had responses. I did not have any chemo or radiation, Thank God, He spared me this. When I went to my family doctor after surgery, she scared me to death by saying, how can you possibly live without your epiglottis? When I got asperation pnenomia, the local hospital was clueless on what to do, I made everyone nervous..well, 1 year out, I'm eating and drinking everything...yes, i do have a few small trials still, but, I can deal with these...
I come to this forum because of the people, people like you and David, Katie,Phrannie,Tim,Skiffin,Matt,luv4lalacrosse,and on and on~~~~these people have been my life-line,my shoulder,my smiles and giggles and my heartbreak...please don't ever feel not welcome..we love you and are walking the walk with you and David

Hard12Find
Posts: 207
Joined: Sep 2012

We love you and David and I can't think of a better place for you to be than with friends....
Jim

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Vivian,

Please don't leave us. You and David are part of our family. I think what makes us so good at helping each other is that we are all different. But, what you do give to us is an unbelieveable example of strength and unconditional love.

Still praying hard for both of you.

Kathy

AJW1966
Posts: 69
Joined: Nov 2012

Your situation may be atypical but your faith, courage and strength are an awesome testimony!
I draw strength from all of that. My wife and i are closer now than ever before.
Thank you!

Alan

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I always look for your posts. You give to this board more than you can every know.

I know what it means to be under the care of hospital staff with no experience with your condition. My worst experience was being on the operating table and having a mask placed over my mouth and nose. The problem is that there is no connection between my mouth and my lungs. My lungs are connected to the hole in my neck (stoma).

I protested by pushing the anesthesiologist's arm away. I was rewarded by being put out. So I didn't see the panic or how my true airway was found. Obviously, I survived; so someone must have found the stoma. I've been told by other laryngectomees (on other message boards) that this is not an infrequent occurrence.

I have started talking a lot about the stoma and neck breathing whenever I'm in for treatment. I have the anesthesiologist look into the stoma before I sign the consent. You will probably have to rattle on about David's condition with each new staff member. I know it sounds like it would be downgrading to the staff, like telling a nurse how to take a blood pressure. Don't know the real answer here.

I hope my little troubles will serve as a distraction. Rick.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I feel like you've given me plenty! The amount of love you have for David is very refreshing to me and has reminded me over and over about what's important and what is nothing to fret about. I feel like I've failed you. I wish I had answers for you or at the very least I could give you a hug and support you need. Please stay here and know that you are our family.
Billie

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I feel like you've given me plenty! The amount of love you have for David is very refreshing to me and has reminded me over and over about what's important and what is nothing to fret about. I feel like I've failed you. I wish I had answers for you or at the very least I could give you a hug and support you need. Please stay here and know that you are our family.
Billie

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

Thunder, but they couldn't have said it any better. You gave me strength when I was getting panicky over my scans and dealing with the "treatable VS Cureable. Let all of us help you through your journey. The love you have for David is truly amazing, and God knows that and will reward you for that. I believe in my heart David has a much better chance just by having you by his side, as the care and copassion that you feel for your best friend is genuine.

We are all here for you.

Mike

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Vivian

DITTO what all the others have said. This is the place for you. We need you. You are one of the strongest caregivers I've ever seen on this forum. You are an inspiration to others.

It sucks what you and David are going through. I wish we had some answers/advice for you, but as you say, David's condition is so rare, there is not much info available.
I hope that all of us can continue to be a source of some strength for both of you.

Keep on hanging in there.

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Hi Vivian,

Over the course of your life you know you have offered support to others of all varieties, in different situations, in different places, under different circumstances. I know you bought a box of girl scout cookies, or handed a homeless person some food or some change.

All these acts of kindness were you paying forward and now it is your time to get some back.

Even though this board has little medical advise to offer to you on blood cancers, just the short time here, I have received far more in emotional support than learning all the side effects and TLA (Three Letter Acronym) of this disease.

Please stay.

Don

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