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All is Well

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Ruben is approx. 6 weeks out from completing 35 rads with concurrent 3 rounds of Cisplatin, and is doing amazingly well per his medical team.  Throughout the treatment, when asked how things are going, Ruben's response was almost always "All is well". He kept the faith, even in the darkest hours.

For those of you who are new, this is a rough and scary road, but the ride will get smoother. There is light at the end of the tunnel, even tho it's dim in the beginning. Keep the faith, pray for guidance and trust God to direct the care. (If you're a Christian, remember, Jesus said all you need is a mustard seed of faith.)

His taste is hypersensative, as is his hearing; he is still making adequate saliva; his weight is down 40 lbs, but he's pretty happy about that! He's still using his G-Tube for 99% of his nutrition, and I believe a lot of that has to do with his mental attitude due to the mouth/tongue/throat/nausea issues during treatment (granted he still has pain/burning with swallowing). His skin color is still yellowish, but it's softer than a babies butt....  ;)  He went through a pretty drastic mood swing that started about two weeks ago, but is doing much better now. It wasn't easy for me to bite my tongue (which I have half of now!!! LOL), but considering everything these survivors go through, a little ranting and raving is acceptable...... to a certain point!

I am SO very proud of my husband and every survivor story I read. You were my inspiration. With my experience as an oncology nurse, I was scared shitless...(even tho Ruben wasn't). I learned more from your experiences than from my own professional experiences. You gave excellent information on remedies, and what to expect. One of Ruben's pet peeves is that 'they didn't tell us anything'.. meaning the medical team. He tells them what and where WE got our information, and advises them to 'look it up on the Cancer forum'.

Except for the one bout of thrush, and the second dose of chemo that shut down his kidneys for 3 days (nightmare story, V.A., yadda yadda yadda) everything went pretty darn well.  Yep, ALL IS WELL.

Today, he's out and about, like he used to be, albeit with a helper (not me!), and is slowly returning to normal. I'm looking forward to him saying he's ready to take a bike ride so I can jump on my Harley and ride up and down Pacific Coast Hwy with him before the summer's out. (I hate riding alone!)

God Bless everyone.... Take Care.... Better Days Ahead.

<3  Jude

 

 

phrannie51's picture
phrannie51
Posts: 3598
Joined: Mar 2012

and you also, Jude!  Glad to hear he's getting back to his old self (tube withstanding, of course Smile).  He's right about the Dr.'s not saying much....I'm so grateful mine were open minded enough to let me have what I thought I should have....all gleaned from the pages of this forum.  They SHOULD come here, so they can already have ideas for how to get us through this, with ideas from all over the world. 

Won't be long before you both are on those Harley's tooling the coast.

p

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

I'm hoping the VA is listening, since they are so tied into cancer protocol's and statistics. I hope the information we constantly fed them about what we've been doing that was different than what they're use to will help open their eyes to 'other' methods and techniques that are effective and really DO work.  I was very candid and up front about remedies we found helpful from this forum like the use of L-Glutamine, along with the fact that we did not shy away from herbals like canibus (not to say it was recommended from this site). Hey, it is what it is and we have the right to do what works, protocol or not.

Take care, God Bless. YOU are such a blessing and a great support person. So many others are too. I read posts often, but don't comment much, because I don't feel worthy. 

Hugs   

Jude

 

TracyLynn72's picture
TracyLynn72
Posts: 636
Joined: May 2013

how well he is doing.  I think it's because he has a pretty great wife!  :)  I actually have a mustard seed in a plastic vial that I've carried with me since I started treatment.  I love that that is all the faith we need!!!  I hope y'all are riding your Harley's very soon. My doctors didn't tell me too much either.  I am forever thankful that I found this site. 

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Thank you Tracy. Even tho there are times I'm not feeling it, I know that little thread is a strong one and keeps me conected to God. When I fail, He doesn't.

God Bless and keep you strong during your journey. 

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Ruben & Jude,

“All is well” or at least they are improving.  It is still early in his recovery; he will be feeling better and wanting to ride soon enough. 

Keep moving forward and enjoy your new normal.

Matt

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Yep, one day at a time and moving forward.  We're adapting to the new 'normal' on a daily basis, since everyday has a 'new' issue/change.  :) 

I can only hope, pray and trust everyday will be better than the last. Each day has it's own anxieties, but TODAY we're good!

Take care my friend. (You're in Oregon, right?...... I'm still hopeful we will move back to our precious little home in Medford.)

Jude

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

That's a great pic of yous guys (it's a S Jersey/Philly thing).

Glad to hear things are going well. I hear you about faith. Mine has been tested time and again. They say trials and tribulations make us stronger. We should be able to leap tall buildings in a single bound don't you think? 

Keep on keeping on and I hope to hear the rolling thunder of two bikes in the near future.

"T"

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Thanks T. It kinda broke my heart to change our picture from what we looked like before we started this journey, to what we look like now. But we're both doing much better now that the treatment is over and things are beginning to get back to 'the new normal' as 'we' call it!

I've read your posts (as well as many others) to Ruben throughout his treatment. He was encouraged, strengthened and moved forward because of all of you.  <3  ((0))

How are you doing? Singing yet?? As a matter of fact, the first time we met with the ' big guys' at the VA in Los Angeles, one of the first things he told them is "we know of a guy that told his team to save his vocal cords cuz he wants to sing again.  I want you to do the same for me, because I love to sing." That guy was/is YOU. T, Ruben sang for two hours straight last night!! Do you know what a blessing you are??? I hope so.

BTW.... when I first joined this group you said you were inspired to write a song........I'm waiting!  LOL 

Take good care my friend. God's Blessings on you, as you are a blessing to us. (I know I get a little mushy, but that's me...... and I'm a rebel at heart..... so I can flip on a dime! God help me!!! )

Jude

 

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Hi Jude,

I just posted a 12 week update on my Facebook and sent to my email list as well. 

My voice, while recovering is not back. I have my speaking voice which is fine but a little hoarse. By the end of the day at work, it's worse. While I can sing, you can hear the raspiness in my voice and I don't have my high register nor the control/strength I had pre-treatment. When my ENT/Surgeon scoped me in June, he discovered some scar tissue from the surgery which has made my throat narrower. I'll be seeing my Speech/Language Pathologist (as well as my RO) on Aug. 6th for a swallow study and we'll address the scar tissue issue. He feels that with therapy I'll be able to break it up. 

I had gigs booked for August and September but sadly I've had to cancel them. The reality is that I'll probably be recovering the remainder of the year and the fate of my voice is up in the air. Besides the quality of my voice, I'm dealing with stamina issues. I'm no where near being able to play and sing for a two hour show. Time will tell if I'll be able to re-gain my pre cancer form. 

I've barely picked up my guitar since last December with the exception of a few weeks prior to playing a wedding on July 13th. I truly miss performing. When I was up in the Park for the wedding, the management and staff were very glad to see me and all were asking when I'd be able to return. It was a wonderful feeling to be missed like that. 

All I can do is continue to put one foot in front of the other and get better. I'm still waiting to hear about my PET scan appointment. If I don't hear anything by next week, I'll be calling to find out. It should be sometime in August as it'll be almost 4 months post Tx. 

Thank you so much for your kind words. I've not written anything in months nor have I had the inspiration as you might expect but hopefully that will change soon. A lkot of folks have said that I need to do another CD and especially after what I've been through. Time will tell.

Positive thoughts and prayers

"T"

 

 

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

If anyone can get there, YOU CAN. You may have a different tone/texture to your voice, but I' ve got a good feeling it will make a statement that people need to hear.

God is better than we know, and you have a gift to share. I'm looking forward to receiving God's gift thru you.

"Mr. T" aint got nothin on YOU. 

P.S. You have a CD??? Where can I get it??  Ruben and I want to hear the man who inspired us.

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Here you go!

www.cdbaby.com/markt 

"T"

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Cool Cool beans!

CherieLW's picture
CherieLW
Posts: 395
Joined: May 2013

Glad to hear things are well!  Prayers will continue!

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Thank you sweetheart. I know you're Dad will get there too.  Did you find a gift for his birthday today? I was going to add a comment.......... we just bought our nephew a little transister radio with hear phones, it cheered him up and gave him such joy. (He has end stage stomach C.)

Take care, and keep up the good work. I'm sure you are your parents pride and joy.

hugs... Jude

CherieLW's picture
CherieLW
Posts: 395
Joined: May 2013

Thanks Jude! As they are mine! I did, but I saw you already commented on it. LOL.  So sorry about your nephew, how old is he? I'll keep him in my prayers? Is he going through treatment?

CherieLW's picture
CherieLW
Posts: 395
Joined: May 2013

Thanks Jude! As they are mine! I did, but I saw you already commented on it. LOL.  So sorry about your nephew, how old is he? I'll keep him in my prayers? Is he going through treatment?

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Johnny is 48, and he was in denial back in November when he was diagnosed. No one could talk him into treatment. Two weeks ago, he finally accepted radiation, but it may be too late.  He's down to 93 lbs, and is too weak for chemo. The doctor told him he has 3-6 months of life left.  What do they know! I've had many patient's whose doctors told them the same thing, and lived another two years and more. One person in particular is a woman who I spent many personal hours with to help get her through the 'death sentence' the doctors gave her over 10 years ago. She's alive, healed and well.  'C' is a mind set. Never say never...

It was yesterday his doctor made that statement... Johnny was mad and depressed, but by last night, his mind set was different, and he was singing to the radio/headset, with a positive attitude. Quality of life, that's what counts.  Staying positive and upbeat is important. Building a strong relationship with God is the best remedy ever. Life is a journey, not the destination.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Something must be wrong with him if he's "normal", LOL...

But then again, I guess we can't all be Abi-Normal, like myself, LOL...

Congrats,

John

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Did I give the impression he's normal...... Oops!  LOL  Tongue Out 

Thanks John..... Laughing

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