Husband's dr appt

[paris]

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.             

[jbeany]

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.   

[MooseMom]

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.

[paris]

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!!!!   

[cassandra]

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

[lmunchkin]

Paris, just a reminder that Prayers Are Being Said For You All.  We love you girl!!!!

lmunchkin

[Darthvadar]

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. 

[MooseMom]

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.   

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.

[Chris]

I still can not come up with anything to say. hope things go well with doctor's appointment.

[jbeany]

Thinking of you, and hoping you aren't pushing yourself too hard.   

[paris]

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.            This really isn't a fun spot to be in. 

[amanda100wilson]

I am sorry to hear about all that you are both going through andI will be thinking of you.

 

[MooseMom]

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.

[MaryD]

 

[brenda seal]

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

[billybags]

Paris, one day at a time. I am sending lots of prayers your way.

[lola]

Paris you r stronger then you think chicka!!!!!!! My heart just hurts for you, wish I could make it go away for you

[cariad]

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. 

[jbeany]

 

[boswife]

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.   

[Sue]

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   

[okarol]

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.
 

[MaryJoe]

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.   

[monrein]

 

Words fail me too...I hope that my cyber hugs offer a speck of comfort Paris.

[paris]

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.