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Nathan how are you and your family?

DadysGirl
Posts: 305
Joined: Aug 2011

Thinking of you all...

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

Bumping this post up.  Thinking of you also.   Hugs

hiccup (not verified)

Thanks for thinking of me and my family guys. I appreciate it. I had an MRI of my liver (where my lymphoma is situated) last Friday, and it's been pretty quiet since.

That was my first MRI.. and very disconcerting... everyone told me it would be loud, but not that crazy.. and making PacMan noises. I starting to lose my ability to make it through these scans without starting to get shallow breathing. They are all so small.. I'm I'm not a big person by far, in fact, I'm a twig... If I were within my normal BMI.. I just don't know what I would've done.

I'm meeting a new radiologist for a consulation this morning, so we'll see. I hope the MRI shows a good blood supply to try to Y-90 microspheres. At the moment, none of the other options of flat out baking my liver with traditional radiation rays or placing adriamycin directly into my liver sound very good. Because I have no car, and no patience for travel or anything much these days.. it seems Y-90 would be something I can do without going to the hospital daily .. and I'm a bit worn out from the chemo route.. and I very little want chemo to be sitting in my body cavity for long periods of time.

I'm not as gung-ho about just accepting any treatment now. I want to have a balance between being comfortable, and living a medical-envasion-free lifestyle. I am completely fine with this being the case... I am 100% accepting that I have cancer still. It is everyone else that is freaking out too much and trying to rub off their feelings for me. I wish they'd quit that....I have always been a solitary person; cancer didn't change that.

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

I'm so glad to hear from you!  I hope you can do the Y-90 if it's doable and a good option.  On a positive note, I'm pretty sure the liver is one of the very few organs/tissues in the body that can regenerate (not quite like "Dr. Who" I guess ;)).  Hell, in my youthful partying days, mine must have!

I fully respect/support your right to choose what you want to do (or not do) regarding your treatment.  Sending you mountains of "mojo" and hugs, Nathan.  Please keep us updated. 

Jim
A little video for you: (click on link)

Feed the cat ;)

DadysGirl
Posts: 305
Joined: Aug 2011

Hi   Nathan, I hope whatever route you choose will be feasible and wishing it would be the right route in the long run for a remission possibly cure... Thinking of you and wishing loved ones around you would be more comfortable and rlaxed as much as its possible to be so they don't add to your emotions and physical well being...take care and I'm glad to hear from you... Keep us posted please ..

fullyloved
Posts: 38
Joined: Oct 2012

I was so glad earlier how things were going well. Now this. Cancer does throw us curveballs, doesn't it? I can relate to the family issues! My own family was in shock and acting like I was gonna drop over dead tomorrow until I told them that I required them to say a joke every 15 minutes! Smile  Hated all the long faces and pity parties they were giving! But we all know that our loved ones go through something we can't imagine as they watch us fight cancer, just as they don't know what we are going through. I hope they calm down about you! And may you have wisdom and peace to make decisions about your treatment. There comes a time for all of us where we have to look at the options realistically and decide what we are willing to go through in fighting this cancer. Thinking about you and saying a few prayers....

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

Nathan,

 

So glad to hear from you.  I hope that you have a plan following your appointment with the new radiologist.  Sorry you are going through all of this - that's for sure.  This mess is so much harder on the family don't you think?  We live it but they stand by wanting to just MAKE IT GO AWAY and they can't.  So they try to not talk about it or talk about it too much... etc.  All because they love us.

Sending warm thoughts and prayers to you.  Hope you found a plan that works for you.

 

(( ))  Donna

 

 

NHLgirl's picture
NHLgirl
Posts: 1
Joined: Aug 2006

Hi Nathan,

 

I had y 90 about 10 years ago as part of the treatment protocol for my stem cell transplant for refractory DLBCL. Out of everything they did to me it was by far the easiest! I hope you are able to get this and that it works for you too!

~ilana

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

Thanks Ilana - that is encouraging news!  I see you've been here a long time but only recently posted?  So I guess a big welcome is in order!

Hugs - Jim

anliperez915's picture
anliperez915
Posts: 739
Joined: Sep 2011

Hi Nathan,

Just dropping by to say hi and to let you know that we support you on whatever you decide to do! Stay strong buddy and keep us updated...take care (((Hugs)))

Sincerely,

Liz

forme's picture
forme
Posts: 1157
Joined: Aug 2010

Hi Nathan

I too want to add my support and send you the most positive energy that I can muster.

I hope your consult went as good as can be expected. Hang in there and keep looking to a positive future.

I totally understand your feelings about being comfortable. Only you know what truly is the best for you. Take all the different components, doctors advice, friends and familys input and then do your best to think only about you. What you want, what you need at any given moment and then decide what will be your next step.

This works well for me. Although it's very hard at times to do, I find that when I truly listen to me, it is the right answer or choice. Im sure there have been many times that the docs have really just been fed up with me, but I am still here. Okay, now I am starting to ramble on.

Just wanted to let you know I am here for you and in my own way I do understand...

Huge hugs

Lisha

illead's picture
illead
Posts: 475
Joined: Aug 2012

We're thinking of you too.  I'm the caregiver so I do agree with Donna.  I know it must be so difficult to find the place you want to be in all of this and then have others try to second guess you.  Just know they love you and worry, worry, worry.  Ideally it should be balanced on all sides but alas, we are all imperfect.  Hope you can all come to some sort of happy medium.  We all worry for you too, good thing we don't know where you live huh?Wink  Bill & Becky

 

Just a note to you Jim.....Thank you so much for your support in that other post the other day, Bill and I are both heartsick over that. Becky

hiccup (not verified)

I was hoping the y-90 was to be the thing for me!! Sadly though, close inspection of my MRI didn't show high enough blood flow to use these little miracle beads. Instead of being fed by my main hepatic artery, the tumor is fed by a bunch of smaller vessels.. so I'm not a good candidate for that type of treatment.

Well, I left that doctor's appointment kinda kicking the dirt about it, because it was the treatment I wanted to try. It's a shame it can't be done. However, though my lymphoma may be resistant to chemo, we've never tried any radiation due to its location. So, we're really thinking that any radiation treatment will be gangbusters in shrinking the sucker :)

 

Things feel alright today, so I'm just gonna go with that! I have another consult coming up here in a few days with another radiologist..

 

Thanks, all for your support. I definately wouldn't say this is a bad time in my life at all, but definitely the most confusing Cool

-Nathan

 

 

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Nathan, I am new here and don't "know" you well. I see an amazing spirit which draws others, myself included, to you. I understand why you have so much support here, and why the people close to you in your "real" life are concerned about you.

For a solitary person, you show much wisdom and creativity. (Probably a result of your solitude).  I love some of your writing. I can just visualize you walking out of the doctor's office, "kicking the dirt".  Do you do any kind of creative writing? Blogging? I hope you do or will consider it.

I bet the doctors feel this same way about you. They are probably thinking about you and working very hard for you. I'm sorry the treatment you had decided on didn't work out for you. They will keep working for you and other's will keep praying for you.

Right now, I wish for you peace and clarity and healing.

And plenty of (((hugs)))

Rocquie

 

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

Dang Nathan.  I'm sorry the Y-90 is not an option for you but am glad there are other options available.  Please keep us updated and know the "mojo" is flowing strong for you.  Hugs - Jim

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Hi Nathan,

So sorry to hear you can't go with Y-90. I haven't heard of it but am going to look into it for myself as I'm at a similar place in treatment as you. I also have a lymphoma that's resistant to chemo.

You seem to have a really great attitude through all this, and so I'm certain your docs will figure out the right treatment. I understand the confusion, as we face so many choices when the chemo fails.

Hope all is well with your family. I know how hard it must be when they start freaking out. I find that I have more patience than many of my family members do. They want an answer yesterday, and I'm ok with waiting a day. So I end up doing the placating and comforting some of the time.

Wishing you all the best! Sunshine, rainbows, and peace.

Love,

Liana

hiccup (not verified)

Liana,

I think you got it spot on right there. I think simply being the patient doesn't mean I don't need to do a little caregiving myself here and there.

 

I was totally bummed about the Y-90! It seemed like a treatment that suited me. Well, I'm over that loss, and I'm pretty pleased so far with my new radiology team. They're going to try and help me set up rides to and from treatment. I really think the only thing I'm going to dislike is staying still in the machine.

 

Have they exposed your lymphoma to radiation yet, Liana? I hear it gives it a good sucker punch Cool

 

-Nathan

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

 

Good to hear from you and you had every right to be bummed about the Y-90.  Moving forward, I'm glad they are assisting you with transportation and you are in better spirits.  As far as staying still - well, I'll tell you a funny story:

I had a spinal puncture for fluid testing in the hospital early on and the PA was training a doctor at the time so she took probably 5 times as long to do it.  I was hunched over on the edge of the bed with a pillow in my lap and my feet on a chair - not exactly a comfortable position.  I kept waiting for her to do the procedure and she kept talking to the guy with her...  I had just eaten about 20 minutes before and they were both behind me and all I could think about was I needed to pass gas - I also felt like I needed to sneeze.  Talk about muttering in my head: "Please do this and get it over with".  Fortunately, she hit the spot the first time - and I let it rip when they left - LOL ;). 

I hope the radiation treatments knock the lymphoma flat on its a$$ for good, Nathan!  Tongue Out

Hugs - Jim

 

 

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Hi Nathan,

I hope the radiation does the trick on knocking out the cancer! I have not been given radiation, I'll ask my doc about that. I think my main mass is in a difficult place, around my heart and lungs.

Love and light,

Liana

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