I Hate Dialysis Message Board
Off-Topic => Off-Topic: Talk about anything you want. => Topic started by: paris on June 04, 2012, 02:56:28 PM
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Some of you know that my husband has been not feeling well for months. He has gone to the doctor, then wouldn't go back. Even when more symptoms showed up. At this point, he has a hematoma in his abdomen that has been there 4 months --- size of a basketball. And many more (golf ball size) all over his body. Today's appointment was with a general surgeon. He goes Wednesday for a biopsy on one lump on his neck, but the surgeon says he is 95% sure it is lymphoma. Says he has classic symptoms. Part of me is --- really? seriously? We have to go through one more threatening diagnosis? And another part of me is ---- Really? He kept putting off going back to the doctor for over two months and he has cancer???? I am scared and mad. Can't we just sit back for awhile and take a breath? I am worried for him, worried about finances (he is the one with good health insurance). I am very tired of being strong. I protected all of the family when I was going through my worst times. Barry is such a huge worrier, and I just am not sure how much I can keep being "susie sunshine" all the time.
Thanks for reading. Now I need to make dinner. I would rather hit something or throw something!! :Kit n Stik;
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This is just unbelievable, Paris. I'm stunned, I really am. I know that life is not really meant to be easy, but first kidney disease and now cancer...does it really have to be THIS hard?
You don't have to be "Susie Sunshine" here on IHD. I hope we can give you the strength to enable you to continue being the family's protector for the foreseeable future.
:grouphug;
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:grouphug; Paris, this makes me so sad and angry all at the same time for you and the family. I also wish with all my heart that finances were not such a huge worry since illness itself is frankly quite enough. Thinking of everyone and please say hello to Barry from me. :grouphug;
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Goodness, Paris! How much more must you endure! You do all your venting here if it helps you! God, I wish it would stop happening to Good People. I guess the Devil knows he hasn't much time left on earth to disrupt peoples lives!!!!
You & Barry are in my thoughts & prayers,
lmunchkin :kickstart;
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!. Learn/ Try not to be Suzie Sunshine! Be yourself
2. Sorry to hear, but hopefully he pulls through and learns a viable lesson in not putting off going to the doctor.
3. Not sure what else to say except the classic "Hang In There"
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paris, I'm so sorry to hear this. Life sends us the most outrageous burdens. It may be a small thing, but here, you have a place of comfort, where you don't have to be strong or put on a happy face. Sending you good thoughts, praying for the best for you and Barry.
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So sorry to hear all this Paris, I'll be thinking of you, and your family.
Keep strong, lots of love Cas
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Oh, Paris. This is just too much. :grouphug;
I wish there were something I could do beyond letting you know that I will be thinking of you. Please keep us informed.
:cuddle;
Aleta
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Oh Liz...
What a nightmare!...
I hope your hubby recovers well... And when he has, THEN you get to kill him for procrastinating about his health!...
Thinking of and praying for you both....
Darth...
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Sorry to hear the bad news from dr's appt. Cancer sucks! It is OK to be scared and mad.
Will keep your husband and your family in my prayer.
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Thank you for the kind thoughts. :cuddle; Biopsy was yesterday. They took one of the lumps from his neck - about an 1 1/2 incision because they wanted the whole thing, not a slice. They put him under due to a breathing problem. I talked to the surgeon. He feels that it is definately lymphoma, probably t-celll lymphoma. Results will be back in a few days, then met with surgeon, refer to ongologist and hopefully get this show on the road. It hasn't sunk in with either of us. Barry is sore and tired today. He has been sicker than we thought for quite awhile. So, this week, he is doing lots of resting. We were suppose to be on vacation -- now it is a staycation.
I feel bad for our kids. They have spent years worrying about me and now their Dad has cancer. Shouldn't one of us be the healthy one? The "kids" (all grown) are scared and sad, but we know they will be a big help as time goes on. Funny - we don't say cancer. I noticed we both just say lymphoma, like that doesn't make it so scary!
@Darthvader, thank you so much for being in the waiting room with me yesterday! I felt kind of alone, and suddenly Darth is talking to me and giving me comfort. Isn't the internet great? There might be an ocean between us, but yesterday you were in the waiting room in Raleigh North Carolina. Love and thanks. :cuddle;
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Hugs, hugs, and more hugs, Paris.
Yes, Darth was there just before they wheeled Carl in to have his TX. Amazing world we live in.
:grouphug; :grouphug; :grouphug;
Aleta
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I will keep you both in my prayers. Doctors have been wrong before, let's hope this is one of those times. God Bless, Bill
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Thoughts.
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,and more thoughts, and love
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Love and prayers.
Funny how one falls apart the minute the other is up and running again. Happens here all of time.
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Delighted to be there Paris and Aleta.....
That's what friends are for, isn't it???... How many times have other members of this forum been there for me???...
Any more news, Paris???....
Love to everyone....
Darth....
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No biopsy results yet. They sent the specimen off to "Big" Duke (we were at Duke Raleigh). The surgeon, nurse, all said we would know in 48 hours to a week. Now they are saying next week--no one ever mentioned 2 weeks. We just want a course of action. And like with my disease, I HATE waiting. We are all staying positive and won't let ourselves get too far down. We'll deal with this like we do everything -- head on and full force.
Thanks for asking about him. It is going to be a long summer.
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I'll be thinking of you guys- I'm sorry you can't catch a break, its downright debilitating to have your brain so hard stewing on things you have little choice but to deal with. :grouphug;
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Hope you get some news soon, Paris....
It'd be nice to get on with it!....
Please keep us informed...
Thinking of, and praying for you...
Darth...
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Paris, I'm so sorry. That's such a frightening thing to go through, and I hope that they are able to get everything out of him, and with minimally invasive methods. Poor thing, you all need a break!
Not saying the word "Cancer..." that's curious. When my dad had cancer, we just called it a tumor. In fact, I was confused at first about whether or not he really had cancer, since no one was saying that word. It was surreal, we couldn't wrap our heads around it at first.
We're all thinking of you and hoping for the best. Take care!
:pray;
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Again, thanks for the comments and support. They have sent the biopsy on the the main Duke hospital. Now they are telling us the results won't be back until next week. Hopefully, they are fine tuning things and want to make sure they have the right t-cell lymphoma (there are many) before they tell us. Each type has a different treatment protocol. Barry just wants to get on with the show.
MomoMcSleepy - it is surreal. Thanks for sharing your story. I don't feel quite so crazy for avoiding the cancer word! Thanks!!
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In Ireland cancer wasn't mentioned AT ALL if possible until recent years.... People referred to a family member or friend as having 'a lump', 'a problem with their blood', 'a tumour', or if you were really daring, 'the big C'....
It's getting better, thank God... People are getting more open about discussing it...
Hope you get news soon, and get this treatment started!...
Love to Ed...
Thinking of you both....
God bless...
Darth....
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not even sure what to say other then I will hold you both in my prayers and I'm sending you BIG hugs, luv youxoxoxoxoxoxox
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I'm so sorry, Paris. Even if the news turns out to be bad, there's still a good chance of a cure, according to what I've read. My dad's former medical partner had Hodgkins disease when he was in his seventies, I believe, and he was cancer-free last time I heard.
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Thank you Lola and Big E, I believe strongly that he will get through this and next year will be a better year with a bright future. The surgeon is very positive. I just wish the results would come in. We all know how hard it is waiting. We patients never have patience!
I appreciate the prayers and good thoughts. Barry does know what an amazing group this is and is so glad I have a good place to go with my fear and worries.
Love you all. :cuddle;
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Thinking of you, and hoping for the best news possible!...
Your other half's lucky to have you!...
Love and best wishes to you both.....
Darth...
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:cuddle; :cuddle; :cuddle;
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My prayers are with you and your lovely husband. :cuddle;
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Today we see the surgeon. He better have the results in. This waiting is ridiculous. Life is on hold until we know exactly what we are dealing with. Good thoughts or prayers would be greatly appreciated today. :cuddle;
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Thinking of you, Paris.
:cuddle; :pray; :cuddle; :pray; :cuddle;
Aleta
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All thoughts are with you. :grouphug;
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I am so eagerly awaiting some word from you about the appt with the doc. :cuddle;
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Any news, Paris?
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Well???...
What did the surgeon have to say???...
Darth.....
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Definately Lymphoma. Now they are testing a little more to make sure they have the exact type of t-cell (there are 50+ t-cell types of lymphoma) Dr. thinks Barry's is one of the rarer types (of course!). We see the oncologist July 12th. We could have gone somewhere else and had an earlier appt, but this dr. is the medical director of DukeRaleigh, his specialty is the blood cancers, Lymphoma, Lukemia and ... shoot.. forgot the other.... starts with an M. He is the doctor that other oncologist send their hard to help patients. We have done lots of research and feel like Barry is in good hands. The best news is the new cancer center at DukeRaleigh is 10 minutes from our house. That will make part of this easier. For some reason, we are both staying very positive. No big meltdowns yet. (although inside, I want to scream).
I have now gone from a 21 month post transplantee to a wife with a husband who has cancer (I said the "C" word"!) I have to keep reminding myself that along the way, I need to take care of me too. Not sure how this is going to work. lol
Did I mention that Barry has 1 brother and 2 sisters and they have all had cancer. One sister died from it. 4 siblings with cancer -- I will never believe that somehow this doesn't pass on genetically. BTY, His mother and grandmother both died from cancer. And we have 2 children who have had good size tumors on the thyroid and paradid gland --- both benign. Our kids are now very aware and concerned for their future.
Thanks for asking, for your thoughts and prayers. Another scary adventure for us. :cuddle;
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Oh, Paris! It's all so unfair. I'm so sorry.
I am glad you at least have this place behind you, all the way, anytime you need us.
You've found a great doctor and are doing what you can. I am thinking of you and hoping that this cancer soon comes to see that it has picked the wrong fight this time.
Huge hugs. :cuddle; :cuddle; :cuddle; :cuddle; :cuddle;
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I have been worrying, Paris.
Thanks for the up-date! :grouphug;
It sounds like Barry is in good hands (including yours!)
I will keep both of you in my thoughts.
:cuddle;
Aleta
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Hi Paris...
Is the 'M' you're thinking of Myeloma???...
Good that your hubby appears to be in good hands... I've great confidence in you and him getting through this with flying colours... Sooner he begins treatment, the better... At least you'll feel like you're 'doing something', rather than waiting and worrying...
Wishing you, your hubby and all the family all the very best...
Love...
Darth...
P.S.... Of course we'll ask about things, and we'll be here for you... Isn't that what friends are for!.....
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Dear cariad, Willowtree and Darth - The three of you brought tears. Each of you are dealing with mulitple problems yourself, yet you took time to encourage me. Thank you. Where else could I get this kind of support? You are all precious to me. We will all get through our situations; leaning on each other. Thank you for letting me share my fears. :cuddle;
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OK, so I've been doing some research. I am assuming that Barry's diagnosis is Non-Hodgkin's lymphoma? And yes, there does seem to be an awful lot of different kinds of NHL depending upon which kinds of cells are reproducing abnormally. T-cell lymphomas make up the minority of NHL, it seems.
Paris, you already know all about living with chronic disease. Lymphomas can be managed and even cured. I am eager to hear more information after your appt on 12 July. We are all here for you just as we have been for these many years. :cuddle;
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Paris, I was hoping for good news for you and your husband. I am sorry to hear that is not so. However, I am glad to hear that you are in capable hands when it comes to the medical care.
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Prayers have been said for you and your hubby.
Take care of yourself while this all is happening.
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"I said the "C" word"!" -> Facing it is the first BIG step. :clap;
"I need to take care of me too" -> Just remember transplant is only a treatment, given a good treatment but you are still not 100% healthy, so take care yourself is a must. If you are not well, how can you care for others?!
In the other thread, we were discussing about Cancer vs kindy failure, it seems kind of silly now. Being sick suck, no matter which it is.
Thanks for the update. Will continue keep you in my prayer.
- Rose
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We're with you, buddy!
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Man, Paris, you are one tough Lady. Know that your "Whole" family is being Lifted Up! We are all here for you dear! Anything we can do, say the word!!
God Bless You,
lmunchkin :kickstart;
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Paris, I am sorry the news was not better, but relieved that you are so close to DukeRaleigh. As you said they are the go-to place for this type of cancer. I have to agree with Darth about starting treatment, waiting is so much more stressful than knowing and doing. Please remember to take time for yourself to de-stress. I know you and Barry will continue to get through this trial taking care of each other..
:cuddle; :pray;
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Paris, I'm so sad that you're all going through yet another stress filled situation...so unfair it hurts. PLease know how often I'm thinking of you. :cuddle; :grouphug; :cuddle;
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:cuddle;
Paris, I wish I could do something to help, but all I can do is to say how sorry I am and hope for the best. Too bad this has to happen to nice people. At least your hubby is getting excellent medical care.
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Dear cariad, Willowtree and Darth - The three of you brought tears. Each of you are dealing with mulitple problems yourself, yet you took time to encourage me. Thank you. Where else could I get this kind of support? You are all precious to me. We will all get through our situations; leaning on each other. Thank you for letting me share my fears. :cuddle;
Ha, this is what I was thinking when you replied to my thread about Gwyn's job loss. :) You are in a state of crisis, yet took the time to support me in this never ending soap opera of mine. Thank you for being there for me, and I will continue to be on your cheerleading squad as long as I'm allowed. Barry has a true fighter on his side. He's seen you face down kidney failure and hopefully will take a page from your book as he embarks upon this battle. :grouphug; :grouphug; :grouphug;
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Your words of encouragement are helping me so much. Some days being the cheerleader is draining. But, I'm in my normal "we'll get through this" mode. I've given some rules to relatives about how to treat Barry --- he doesn't want to hear one bad story. His brother told him about someone he knows who had Lymphoma for 12 years, was in remission and then it returned. And with that news, he went home and shot himself!! What kind of story is that to share? So, the relatives in Ohio have been reminded that Barry has a great, supportive family who is surrounding him with hope and love. They don't need to find other doctors, we are in good hands. They don't need to take over. I've got this covered. They want to know when Barry thinks he can come "home" to see them!? Hmmmm - the highway goes both ways. So, if we shut the rest of the world out, we do pretty good. He sleeps and naps a lot, but still goes to work. I think it is good for him, but it does wear him out. I am rearranging the bedroom, so when treatments start, things will be comfy cozy when he feels bad. New pillows always make you feel better. And am making new pillowcases from fun fabrics, just to be silly. I'm making the bathroom safer - with some rails etc, so he won't fall. Really, I'm keeping my mind busy with stupid stuff. At the end of the day, I think "where would I be without IHD"? I tried to explain all of you to my book club. They didn't get it! I get it!!! Thank you. You are all a huge blessing in my life. My heart is full of love and admiration for all of you. :cuddle; :cuddle; :cuddle;
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Sometimes, the little stuff is what matters. A relaxing environment is essential to recovering. And no needs their friends and family or partner hovering over them every second in a dither.
As for IHD...We're a support group - everyone in the same boat, no one with any oars in the water. But we hold hands when we hit the rapids. :cuddle;
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Paris, would you mind terribly giving us some info on what exactly his treatment will entail? What have you both been told to expect?
I can't believe that story that Barry's brother told him. Who would be so stupid? What could he possibly have been thinking?
I'm really sorry that shutting the world out seems to be the best way to handle this for you, that his family seems to have lost the way to your house, but maybe that's just as well.
Again, I know I don't have to tell you that millions of people in this country live with chronic illnesses like lymphoma and CKD. I know you will handle this with your usual aplomb, and when your aplomb bombs, we here on IHD are ready to support you like you've done for the rest of us for so very long.
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MooseMom, we are in limbo. In order to see the highest recommended in the field, we had to wait for his appointment. So, July 12 we see the oncologist. He will have all the results and we hope the plan will made clear to us and something can get started.
My biggest fear all along is that Barry has been sick for a long time. The docs might think it started when he first went to the doctor, but he had the lumps for months before seeing anyone. And symptoms can be traced back to months before the lumps or sores became visible. I see wasted months.
We really aren't shutting the world out. Barry wants concrete answers before the world knows about it. Having watched his sister die from cancer and the family history, he just isn't ready for the looks people give or the words they say. It is hard having two of us with things going on. My other big concern is taking care of everything while he is going through treatments, etc. I'm doing too much already -- moving furniture, lifting heavy things, trying to make things easier in the house (hand rails, etc). Yesterday was a hurt from head to toe, throwing up day, but I need to push through keep getting things done. Maybe I focus on that because I can take charge of that; I can't take charge of cancer.
Thanks for the concern ---------------------now back to YOU!!!! :cuddle;
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sorry Paris I think I understand a bit of what you are going through. I'm so sorry, and wish you both lots of strength.
Don't push your self too hard though?
lots of love, and strength Cas
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Paris, just a reminder that Prayers Are Being Said For You All. We love you girl!!!!
lmunchkin :kickstart;
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Hi Paris...
Just a quick message to say 'Hello' and that I'm thinking of you...
Sorry I haven't been in touch, but Mum's not the best... Trying to hold a glass is a major effort for her these days... Oh the joys of Parkinson's!!!!....
Haven't forgotten about you, and think of you often...
Love...
Darth...
AN IRISH BLESSING JUST FOR YOU
May God grant you always...
A sunbeam to warm you,
A moonbeam to charm you,
A sheltering angel,
so nothing can harm you.
Laughter to cheer you,
Faithful friends near you.
And whenever you pray,
Heaven to hear you.
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MooseMom, we are in limbo. In order to see the highest recommended in the field, we had to wait for his appointment. So, July 12 we see the oncologist. He will have all the results and we hope the plan will made clear to us and something can get started.
Limbo is not a pleasant place to be. The 12th is coming up soon, and you're right...you are in sort of a holding pattern until then. We all know how the anticipation can be so much worse than finally being able to have a plan of attack. :cuddle;
My biggest fear all along is that Barry has been sick for a long time. The docs might think it started when he first went to the doctor, but he had the lumps for months before seeing anyone. And symptoms can be traced back to months before the lumps or sores became visible. I see wasted months.
You're probably right. You are a smart lady and you know your husband better than any doctor, so your intuition is probably spot on. Hopefully the wasted months will be largely irrelevant, but I understand the frustration of having any wasted time.
We really aren't shutting the world out. Barry wants concrete answers before the world knows about it. Having watched his sister die from cancer and the family history, he just isn't ready for the looks people give or the words they say. It is hard having two of us with things going on. My other big concern is taking care of everything while he is going through treatments, etc. I'm doing too much already -- moving furniture, lifting heavy things, trying to make things easier in the house (hand rails, etc). Yesterday was a hurt from head to toe, throwing up day, but I need to push through keep getting things done. Maybe I focus on that because I can take charge of that; I can't take charge of cancer.
Yes, I think Barry is being smart to gather all the info possible before informing everyone else. I'm sure they will have many questions, and not yet having answers would only lead to more frustration.
I can't imagine the burden of having both of you with such huge health issues at the forefront. What can you do? Life can really pile on. But I get it that you want to control as much as possible because you are right, you can't control cancer. You control the things you can control. Being able to control your environment and to provide a nice, safe, healing home for your husband is a terrific way to grab control from the hands of Fate. We both know that you should be careful and should rest as much as possible, but I think you are like me and won't take such wise advice. LOL! You just do what you need to do.
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I still can not come up with anything to say. hope things go well with doctor's appointment.
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Thinking of you, and hoping you aren't pushing yourself too hard. :cuddle;
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May I please scream and cry for a moment? So, here it is in a nutshell. Periferal t-cell lymphoma. Stage 4. Hard type to treat. Next week is a CT scan, PET scan and bone marrow extraction. He may need a bone marrow transplant in the future. No radiation - the areas are too big. Chemo will start within 2 weeks. They asked him to be in a trial study for this specific type. All I could think about was Cariod and the study she was in. That helped. We need to try everything.
I am not strong. God may have given me more than I can handle. It is not God's will for Barry to be this sick. I am worried how I am going to keep up with his disease and not put mine in jeapardy. I am mad and I would really like to wake up from this nightmare now.
I seem very positive on the outside -- keep up my image. But inside, I am scared. Watching him change so much in a few weeks is heartbreaking. He's lost 30 pounds in 6 weeks and is starting to look fragile. And of course, insurance, bills and the reality of our finances is always an issue. Thanks for listening. :cuddle; :cuddle; This really isn't a fun spot to be in.
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I am sorry to hear about all that you are both going through andI will be thinking of you.
:cuddle; :cuddle;
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I personally believe that it is not true that God gives us only as much as we can bear. If that were true, there would be no suicides, no depression, no social ills, no prisons. People break for all kinds of reasons. I've seen it. I believe that God exists, but what I sometimes question is His mercy and His beneficience.
I am beyond sorry that this is happening to people as good and true as you and Barry. It is so vastly unfair, and frankly, I am sitting here enraged and furious. There is no reason for this senseless suffering, no reason at all. I don't want to believe that this is God's Will in any way.
It must be soul-destroyingly difficult to always be 'strong". Sometimes, if you just pretend to be strong, then it is easier to truly feel strong. But such constant pretense saps the energy from your body and your soul; to always be strong is just impossible, so please don't put this extra burden on your shoulders.
I have some understanding of what it is like to watch a person you love deteriorate. It is extraordinarily sad and painful, and it makes you feel so helpless.
If there is anything at all that we can do for you, please let us know. We want you to feel loved and supported by your IHD family.
Maybe the clinical trial will provide a miracle. You've already had one miracle, so maybe God is planning another for you. I sure hope so.
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:grouphug;
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I am so sorry to hear your husband's diagnosis was not good , it is very hard watching someone you love suffer . I love your idea about doing up the bedroom so it will be a little haven , especially the new pillow slips . It gives you something to focus on and helps you feel less hopeless .
I hope the chemo is not too taxing and that you remain positive and cheerful under very trying circumstances - he will need that .
Amazing how you find out who you can really count on isn't it - Laurie's brother has been missing from his life for three years now as it upsets him to see Laurie so sick !
Best wishes to you both .
Brenda
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Paris, one day at a time. I am sending lots of prayers your way.
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Paris you r stronger then you think chicka!!!!!!! My heart just hurts for you, wish I could make it go away for you :grouphug; :grouphug;
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Oh Paris. I wish I had the answers. This is truly pissing me off that you barely had time to catch your breath from your own battle with kidney failure, and now you have to watch Barry go through this.
My thoughts, for whatever they could be worth: get as much of that fear out in the open as possible. A burden shared is a burden halved, right? A burden shared here is a burden smashed to bits. Even if all we can do on a given day is say that we hear you, I know we will all want our chance to say that to you.
You're a smart woman, so I would say follow your instinct on the clinical trial. You have said you trust this doctor, so if what he says about the trial adds up, I'd tell Barry to jump. My thoughts and highest hopes are with you both. :grouphug; :grouphug; :grouphug; :grouphug;
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:grouphug; :grouphug; :grouphug;
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It's hard to accept this even in our distance.. Im so sorry, it sickens me to think of what your going through. It hurts deep. God bless you dear, and bring you strength and health in your household. I wish i could change this for you. :grouphug;
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I don't know you Paris, or your husband, I'm still new on here - but I want you to know that my thoughts and prayers are with you, it just seems that some families get it all hey, sucks big time :grouphug; :pray;
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I am so sorry Paris. I wish you could just get a break from turmoil and just enjoy life.
I think I have mentioned that my mom has lymphoma and while they say it cannot be cured, it so far has been controlled with chemo. I cannot recall what kind she has beyond being non-Hodgkins lymphoma.
Please know we are all here for you and if I can help in any way.
:cuddle; :cuddle; :cuddle;
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Oh Paris, I am so very sorry to hear this. I simply don't have words to express how badly I feel for you and Barry. I will be praying that the effects from the chemo will not be too severe. Also that you can find some peace and comfort somewhere in this mess. :cuddle; :pray;
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:grouphug; :grouphug; :grouphug;
Words fail me too...I hope that my cyber hugs offer a speck of comfort Paris.
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This is a very fast road we are on. Yesterday was ct/pet scan and another meeting with Barry's team. Barry has the absolute hardest type of t-cell lymphoma there is. Very fast growing and aggressive. Chemo starts Monday morning. He has a bone marrow biopsy first, then the first chemo. He will be on a 50 day treatment schedule -- then another pet scan to see if it is better, then the 50 day cycle begins again. We are looking at a year of treatments. Next week he will have 3 days of treatments, the 4th day a shot, then another treatment. Then it will be weekly treatments for three weeks. He will have 2 weeks with no treatments, then pet scan. Repeat every 50 days.
He is really having a hard time -- in two months he has had to accept a lot. He doesn't want to read any of the papers the doctor and team give him -- I go them line by line. He doesn't need to read them because he doesn't need to know right now that the outcome doesn't look good. The dr. is going to talk to him again on Monday about prognosis, depression, etc. because he can tell that Barry is only accepting a little info at a time. But, he wants Barry to have a realistic view.
I owe lots of replies, thank yous, pm's, etc. I bless you all for every prayer, cards, and incredible support. You all lift me more than any of the extended family has done. They just want it all to be better and make a pretty picture. It isn't pretty. I will answer everyone, but it may take a bit of time. I am emotionally drained and talking about it makes it all so real.
Thank you. I love you all and I will be holding onto you for dear life -- you are a big part of my lifeline. :cuddle;
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Not unlike Barry, I'm having a hard time accepting all of this, too. I am just devastated. I am so sorry that the next year will be filled with treatments and the anxiety that goes with waiting for test results.
I wish you both peace and love and hope. I'm still hoping that he will get his miracle.
We are here for you both, paris. :grouphug;
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I'm really sorry that it's taken me so long to contribute to this thread Paris, but please know that I'm thinking of you both and sending many *huggles* (not that they do much good!) your way.
Much love ... ♥
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Paris, more than anything I want to wish this away....
Even if you are staying strong on the outside, I'm crying.
You are one amazing person, and neither you nor Barry deserves this. I am just so very sad. Hugs to you, to Barry and to all of your family. Lean on them, and lean on us.
Words are so inadequate.
:grouphug;
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:pray; :pray; :pray; :pray; :pray; :pray;
lmunchkin
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:grouphug; Paris, I hurt for you all and wish I could whisk away some of your burden. I'm flooded by images from Vegas, of Barry patiently carrying load after load of stuff from the car to your suite, driving to the restaurant for breakfast and just being there with and for us all. You are such a special family and I send you thoughts of strength... :cuddle; :cuddle; :cuddle; :grouphug;
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I want you to know that I am praying for you and the family. I know how stressful it can be. Take it one day at a time. :grouphug; :grouphug; :grouphug; :grouphug;
I know when Victor was down with his injury sometime I took it one second at a time....okay that second was good, this next one is coming....then it was a minute at a time...okay made it through that minute without losing my mind...all right now it has been five minutes.....I have not run screaming from the room yet... good for you! It was taking it slow one thing at a time.
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:grouphug; :grouphug; :grouphug;
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I am so deeply sorry to hear all of this. please know that you and your husband are in my thoughts/prayers. :grouphug;
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:( Love you paris
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My thoughts are with you, paris!
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Thinking of You & Barry and looking upward. Love to you both.
lmunchkin
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Still checking in on you Paris! Know you have your plate full now, but wanting you to know that Im thinking of you!
lmunchkin
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:waving; Hey paris, hope you're ok,
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We're all here for you and Barry. :cuddle;
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I miss you all so much. This is just so unreal. Keeping track of my stuff kept me busy, but now with Barry - I have moments of being overwhelmed. As I have mentioned before, he doesn't like to look at results, paperwork, labs, etc. So I am walking around with the results of the 1st pet scan and he doesn't want to know anything about it. As long as the lesions look better, it makes him feel like it is all working. I truly hope so. He has had new ones form, but maybe the drugs are slowing it down some. He only knows about the tumors and lesions he can see on the skin. He doesn't know that there are many throughtout his lungs, some 2-3 inches. All the soft tissue in the abdoman hasdozens of tumors, but none are on the other organs, just the lungs. His mouth reacted to the last drug and he can't have another round until all the sores are healed. It felt like the inside skin was burnt. He could only eat through a straw or drink a little soup. He is eating better the past two days. He missed one treatment, but it looks like his mouth will be good for Monday's. Going to the ER with a 101.6 fever was no fun. He had 3 days of round the clock antibiotics and a total of 4 units of blood. His white count was .3 . It is now back up to 3. I like it when the decimal point is on the right side instead of the left!
His hair is falling out. It is such a reminder of what is going on. He knows he won't be back at work. I think he has set Jan. 11th as his retirement. He had lots of sick/vacation time and co-workers have donated 2 more months to him. He has great people he works with. He will have a 100 days of treatments and rest until the next petscan. That will be the end of October. We haven't gone any where since summer began. Just to the hospital and occasionally I have to get groceries. Every once in a while, I just want to run away. We have been dealing with major health problems for about 10 years now. I'm really not complaining -- I do know many are facing much worse.
I need to make being here a top priority. I need my safe place where others know what is going on. BTW, friends tell him how good he looks! He has lost almost 70 pounds, hair is getting spotty - but he still looks good! :rofl; Nope, he looks like a man with Stage 4 cancer! One good friend said he looked good for what he is going through. I will remember that phrase. It acknowledges the illness while trying to say something nice.
Again, I miss all of you so much. I owe some messages and I will get them sent. I am trying to get life sorted out and organized, but so far, I am not getting it done. Thank you for your concerns, thoughts and prayers. He needs them so much. :grouphug;
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Just sending lots and lots of
:grouphug; :cuddle; :grouphug; :cuddle; :grouphug; :cuddle; :grouphug;
Aleta
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There is something called "Magic Mouthwash" which is designed to help those who develop mouth sores from chemotherapy (if that is what caused the problem). You can check out what the Mayo Clinic has to say about it; http://www.mayoclinic.com/health/magic-mouthwash/AN02024/ .
I feel for what you are going through. Sometimes the treatments my brother-in-law went through were pretty rough, and my sister was his primary caregiver. She felt she had to be strong for him, but often she felt really exhausted (and not able to show it, but had to keep positive for him even when most stressed out). Like everyone else here, I will be praying for both of you.
:cuddle; :cuddle; :cuddle;
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:grouphug;
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Love to all of you. I try to send something to you once a week in the mail.
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I am happy to see you posting Paris. I agree, we get so much from this forum. And you have given so much to many people here. We can walk this path together, holding each other up. Love you, please tell Barry I said hello.
:grouphug;
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:grouphug; :grouphug; :grouphug; We're here for you.
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Thinking of you & praying for you both.
- Rose