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Why cant we just be normal

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

I am seeing all the people I started this journey with ringing the bell and I am extremely happy you have made it this far, but I also find myself upset that nothing along this journey has been normal for us. It is like we got on the wrong bus. From the very beginning you stood by me as I lamented about all our delays and you were there to encourage. Now after all this time we never got the neck dissection, never got the chemo and only got 13 radiation treatments. So if we kick the plasma cell leukemia we will still have a beast waiting. This PPCL is the pits. He has had two blood transfusions a platelet transfusion, magnesium, potassium, blood cultures from the PICC and arm twice. Slept with ice packs under his arms to break fevers. We need a new and improved PICC line. They took him down to get it and we have to wait some more on some kind of test to make sure it is safe. They are gnawing at the bit to give the seven drug chemo, but without the access they can't. I am so frustrated with our situation, but at least the doctors and nurses are extremely nice. I think they had everyone they could round to see David the anomaly. I will continue to hope and stay on the forum, but please.forgive me if I seem like I am in despair from time to time. I keep telling you how much you mean to me, but I really want you to know. Life is so fragile and there is only so much time to tell people who are special how you feel. It helps me to keep going knowing hou are here for me. I really don't know others who understand. Even the hematologist, who doesn't understand why David has a PEG tube.

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

just know that we/I am here, a lot of us are here for a reason...

We are here for you, and others like you and your situation.

Please know that you are in my prayers and many others on here as well.

Thoughts and Prayers,
John

ditto1
Posts: 634
Joined: Mar 2012

we cannot change what you are going thru and Lord knows its been tough on you two. But the thing you can be sure of we will be here day and night 24 hours to hold you thru this ordeal. Yes it sucks but its not over its a process. Only God knows the outcome but until he makes that definative one way or the other we will pray for recovery and a long life for you both. But until we reach that point we are here for you. The Dittos and everyone else.

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

I second everything that has already been said. We are here for you and praying for you every second.

Kathy

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

the last few (feels like MANY) weeks, the delays, the anomolies, the fevers and illness...I feel you have every right to say "why us"..."why me"..."why David"...it just ain't fair! Your feeling of dispair is what all of us would feel. After kicking the dispair around for a while, you will come back to acceptance of life on life's terms, and keep on trudging...you will find your path...you WILL!!

David had 13 radiation treatments, that's nearly half way thru...and the chemo for HNC isn't what kills those cells, it's the rads...so putting it on the back burner for now, might not hold any real implications.

The Hemotologist deals with blood...not carcinoma of the head and neck...his focus is on David's blood counts, so it doesn't surprise me that everytime he sees that tube he wonders "why is that there??"...then he probably remembers "oh yeah"...The PPCL is far more dangerous than the HNC, first things first is the perfect motto for where you and David find yourselves today. The Dr.'s know how critical it is for David to start this chemo.

You better stay on here!! We're all holding your hand and have you both stuffed deeply in our pockets...

p

Mrs. Sarge
Posts: 202
Joined: Apr 2012

As a lurker,lately, who's completed not as tough a regimen as most, I'm VERY concerned and caring for you both! I've read your stories every day and hoping and praying for the best outcome for you both! You're in a dark valley right now but just HOLD ON, we're with you all the way and sounds like you have a caring team to take care of you, so just know we're all with you here!

CivilMatt's picture
CivilMatt
Posts: 3094
Joined: May 2012

Vivian,

Prayers and hope

Matt

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

I was so hesitant to put our completed treatment on this forum because of what you and David were going through. It's difficult to feel a lot of joy right now...I know we aren't out of the woods yet. I continue to think of you both always and just because we are done with our treatment, doesn't mean we have forgotten about you and David. You did not get on the wrong bus..you are just on the bus a little longer than some us. Don't leave us....you need us here. I know it's tough to read all of these posts sometimes. Everyone is just giving their updates...please continue to give us yours. They mean a lot to all of us. Everyday I'm watching for an email from you. You have become a good friend to me as well...even if we've never met. I feel like I've known you a lifetime and please know that I'm with you in spirit holding your hand my friend. I hope you feel it. I pray you will see some light soon. You and David are always in my thoughts and prayers.

I have always kept this biblical quote near my desk and read it daily. I've found that each day I had a different problem it still meant the same.....which means we still have hope regardless of our problem. Hold onto the Hope and Faith my friend.

God hath not promised
Skies always blue,
Flowers-strewn pathways
All our lives through.
God hath not promised
Sun without rain,
Joy without sorrow,
Peace without pain.

But God hath promised
Strength for the day;
Rest for the labor,
Light for the way;
Grace for the trials,
Help from above;
Unfailing sympathy,
Undying love...

~C

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

There is not much i can say that hasn't already been said. Just know that my words are not just simply words, I mean it when I say that I am praying for you both. I mean it when I say I wish I could be there to help you and I mean it when I say I have faith and hope that things are going to turn around for you and David.
Stay here with us and know that we want to hear from you.
Sending hugs,
Billie

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

Patients and caregivers need both kinds of story. The good results and the poor results. We don't get either from the professionals. So we must depend upon each other. Rick.

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

when my Dad passed, why do bad things happen to good people..why did God choose my Dad when there's so many evil, mean people , seems like the world would be a better place without . He answered, it isn't our place to question, we'll understand someday. I understand how you're feeling and I think of you two every day~~please know we/I are praying for you and David.

By the way, I didnt like my Preacher's answer that day, long ago..and I still don't.

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

I have had a pretty good day as far as keeping my composure, but as the night grows nearer I find myself more near tears than every. I had to go home to get some papers for David to give to our lawyer when he comes to the hospital. He is making his will and changing his life insurance beneficiary at the nudging of his mother. I didn't marry him for money and I guess she knows that and wants me to have something when this is over. I had a friend who is a nurse at the BMT today come over and ask me is it really worth the type chemo they are getting ready to do. She said the side effects are awful and his quality of life will suffer even if he survives it. Based on the research it would take six months of chemo to be prepared to receive the bone marrow transplant and she said was it worth the pain he will endure. There hasn't been anyone with PPCL in Kentucky to have ever survived to the bone marrow transplant. Not only that because of the type of cancer he will have to have his own bone marrow harvested, which is not easy. It is so hard to get this cancer into remission. I know he could be the one who makes it to the finish line here in Kentucky, but it was definitely a reality check. She told me this as a personal friend of David and I know it was coming from her heart. I could see her holding back her tears. I really don't want to lose the man I prayed for, but I don't want him to prolong suffering and then die either. He has lived the past four months only existing. Feeling so sick he can't manage to go to the mailbox himself. He is sitting with his mother now. My hope is they are discussing his wishes and they feel out the living will. That way I won't be in the position of having to make that decision. Please continue to pray, not only for David but for me. Pray God gives me the strength to do what is right by David if the time comes I have to.

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

I am newer here, but I have read so many of your posts, I admire your strength, you are so good to David, so strong for him. My prayers are with you both and I pray that God sheds light on you and your path, and provides comfort for David.

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

You have offered me comfort and encouragement. Wish I could return that gift. I hope all decisions for David's care will be group decisions. No one person should carry the total burden. Most hospitals have a chapel. Just a suggestion: that might be the best place to make a decision. Or in David's ICU, with only friends and family there. No healthcare professionals. We are all walking alongside with you. Rick.

luvofmylif
Posts: 344
Joined: Sep 2012

Reading your posts hurts so bad. I don't know how I would be in your situation. I know how scared I am just dealing with john's illness, so I can only imagine what you are going through with the severity of David's illness.

Iknow you will be there for David no matter what happens. Not one of us can make this go away , all we can do is let you know that we are there for you. I am so sorry for all that you continue to go through and so so sorry for David. Please keep posting ... you are not alone...all of us on this site share a common bond and share in your pain.

Joan

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

frustrate me as the human person I am to read your posts. I too want so badly for something, anything to make this all go away for you and David. I often say on this board all I have to offer is prayer.....maybe I should not say it that way....I refuse to believe prayer does not help and yes, at times provide the miracle we seek.

So I am praying for you and David........I wish like others on here we had answers and "why" to all that happens....but I don't.

Thinking of you and David.....

Keep checking in and keep us posted please.

Tim

Ladylacy
Posts: 517
Joined: Apr 2012

I read your posts and cry. I am so sorry that you and your husband are having to deal with this horrible disease. We are dealing with it but not to the extent you are and my husband is no where near as young as yours. I remember seeing the children come in when my husband was undergoing radiation and then the very young men and women undergoing chemo and wondering why people have to go thru such a horrible disease. I wonder why children have to suffer so and what did they do to deserve this horrible disease and for that matter anyone. I really wonder why people have to suffer so much anyway.

Please know that you and your husband are in my thoughts and prayers.

Sharon

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

I have finally broke down and decided to go see a Psychiatrist who focuses only on Oncology related issues. I see him at 2:30 today, and I will post the results. I may appear to be strong on the outside, but am a complete blithering mess on the inside, and MUST find a way to bring myself to some kind of normal so I can cope.I am depressed, stressed, confused, angry, panicy, ETC. ETC. and this is no way to live. In addition to my Cancer recurrance, I have a son who is a heroin addict, and I like an idiot went out one time to celebrate anothers 2 year C free and got a DUI that I have to also spend 20 hours a week taking care of while starting a new job and having to deal with my Chemo.

In short, you are not alone, this is a real life issue that for some will be forever controlled unless you find your way of dealing with it.

Mike

katenorwood
Posts: 1863
Joined: May 2012

Vivian,
I believe we don't take the time to think of these things as a caregiver. First know that you've been through the ringer...and my heart goes out to both David and yourself ! But Mike is so right about reaching out when needed. The feelings just catch up with us and can reek havoc on not only our thoughts, but body as well. I was a caregiver for my Mother who passed at home, her choice...besides working full time and other family issues. I never had a chance to breathe for just me...and then whap hit with my own dx. Know it's o.k. to feel what you're feeling, but if it starts to get where you can't function or think clearly....reach out to a good proffessional. Warmest thoughts sent out to you lady...you are one tough woman. Katie

Crazymom's picture
Crazymom
Posts: 318
Joined: Nov 2011

I am so sorry it is so difficult. I do not know what to say except that I am glad you are on this site and I will pray for you everyday. I know it is hard, but all of us on this site are here for you if you need us. Ann

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I figure I am on the wrong bus but at least I'm still riding. It is very frustrating and for 90% of us, we will never be "normal" again. I wonder at times why I keep riding but something inside me tells me I have to.

Please try and take care of yourself as best you can.

Denny

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