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New to site and just rambling I guess...

AmandaM579's picture
AmandaM579
Posts: 1
Joined: Jan 2013

Hello, my name is Amanda. I am 23 years old and just recently diagnosed with an aggressive t-cell/b-cell NHLymphoma. I am struggling with what to write, or how to even navigate this site. In all honestly I have no clue what I'm doing. All I know is that it no longer helps just trying to talk to my family and friends. They don't understand as much as they want to and it's hard for me to explain it to them. The pain, the fear, the anxiety(which is a lot), and my newest addition to this journey, depression. I feel so isolated from everyone. I feel like I've lost my life. I can't go out and do things that I used to. I had to give up smoking, one of my very few forms of stress relief. Not to mention I would kill for a glass of wine but I'm only able to drink that on the last 3 days right before my next round of chemo. And what makes it worse is that I feel guilty for wanting these mundane things. To be able to go to the grocery store without having to wear a mask. To walk around outside and not have people look at me funny because I have no hair, or eyelashes, and that I'm losing my eyebrows. And then I get angry. So angry for feeling guilty about just wanting my life back. Then I hit this anxiety of, 'what ifs', and then I sink into this hole of depression. It's so hard to get out of. I just want to curl myself into a ball, block out reality and sleep for days, dreaming that I was me again. Dreaming that this had never happened to me. Not just me either. To my parents, and my sister and my nieces and nephew. I don't want them worrying or being scared for me. All I know right now is that I'm so lost and I have no idea what I'm doing or how to find a balance in my life, and it all leads me right back to anger and depression. And I'm so sick of it. I'm sick and tired of being sick and tired. I just want my life back!

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Hi Amanda and welcome to the site.  You will find wonderfully supportive and caring folks here and they will chime in shortly.   Please know  lymphoma is generally very treatable.  There are many success stories on this site and hope is alive and well here and you are not alone.  Know your feelings are very human and normal.  Hopefully you are on medication for anxiety - I know it helped me alot (Ativan).

I had Diffuse Large B Cell Lymphoma and have been in remission for a little over a year now - you can read about me in my profile.  I know it's hard now but there is life after cancer.  I can tell you are strong and will get through this.  At this point, focus on getting through your treatments and as many say, "Take it one day at a time".  Attitude and humor help a lot with this so use them to your advantage. 

Folks here will tell you I'm the funny, sometimes crazy one but I know it helped me get through this.  I hated losing my hair but it made bathing a snap.  I remember many months ago writing about how I thought I had pretty decent pecs for my age until I lost the hair on my chest and realized I had "man boobs" Embarassed.  I wore funny hats and "dew rags" and paraded them around in the hospital, dragging that dang IV pole with me.  I didn't have to wear a mask very often but I seriously considered painting big red lips on it  so I would have a smile.

Please feel free to come here and vent, rant, ask questions, or offer support yourself.  We're all in this together, Amanda.

Hugs,

Jim

 

 

 

 

 

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hi Amanda, without repeating what Jim said, you have to stay positive, it will get better. I been thru this, twice in my life. It does change you, I still have feelings of anxiety, but the one thing that cancer can't take from you, is the person inside of you. You are young and have your whole life ahead of you... plenty of time to drink some good wine! LOL Stay strong Vinny

 

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Hi Amanda.  My mom was diagnosed about the same time as you.  It has been 3 months for her as well.  She also has Large B Cell Lymphoma, but a rare type called Intravascular (cancer is in the blood).  She was in shock and has a hard time remembering her first time in the hospital.  My mom is 82 and never ever had any health issues.  She was very active.  Always out and about during the day. She loves to cook and bake and also cannot do those things right now.    She is somewhat weak from the chemo so she cannot walk very much.  She too, is very Angry.  One thing I can tell you is that you have your age on your side.  Most lymphoma's are treatable and even curable.  You can still be active.  Infact, it is encouraged to stay active.  Everyone on this site is wondeful and will keep your spirits up. They have uplifted mine.    As for your hair and eyebrows.  The hats and do rags sound great (Jim really enjoyed them) or a wig.  And eyebrow pencil works great.  My sister and I do makeover days with my mom.  Her wig looks beautiful on her and the eyebrow pencil a little mascara and lip gloss does wonders for her mood. 

Hugs, Emily

 

anliperez915's picture
anliperez915
Posts: 751
Joined: Sep 2011

Hi Amanda and welcome to the group,

I know how you feel, I still feel like that sometimes when I just want to go on with my life. I wish I could work right now and just be normal, but because I depend on SSI and Medicare, I can't work at the moment. I was diagnosed in July 2011 and was just told in Nov. that I'm in Remission!! It was a long year and I still have to finish my last two treatments which will take most of this year. I'm currently on my third Rituxan treatment and hopefully in Aug. will be my last round.

Have you thought about seeing some type of therapist to help you with your depression? I remember the first six months were the hardest for me, I was very depressed couldn't stop crying, I really thought I was gonna be a gonner but I went to see a therapist and I realized that I was just going to have to be strong and fight because I have kids that still need me. You have to fight and stay strong for your own reasons not to mention that you're really young!

This group really helped me and hopefully we can help you! Come back and let us know how you're doing. Take care

Sincerely,

Liz

NANCYL1
Posts: 238
Joined: Jun 2012

Hello Amanda:

I have B Cell Lymphoma.  Was diagnosed in May 2012, and am being treated with Rituxan infusions, and am thus far doing ok.

I know what you mean about trying to communicate with friends and family.  In my situation, my family has problems talking about this, apparently.  But talk we must.  I see a psychologist once a week and take the generic of Atavin (anti-anxiety) and the generic of Lexipro (anti-anxiety and depression).   It helps me.   I think some people just do not know what to say to us, but sometimes we must talk, and all we really need is a good, sympathetic listener.   Don't you agree?

There are some very kind and sympathetic "listeners" on this board.

Stay in touch.

Nancy

 

 

 

 

 

coachmike
Posts: 143
Joined: Oct 2011

Hi Amanda

My name is mike and i also had B Cell lymphoma. I went through 11 rounds of chemo and ended up doing an auto stem cell transplant. We all are too familiar with the emotional ups and downs that come with this battle. Sometimes the emotions are harder than the chemo side effects. Find your source of strength whether it is a spiritual being, family, friends, etc...something that gives you purpose and a reason to fight. Dont let this beat you, realize that you are stronger and better than this ugly disease. Have comfort in knowing that when you beat this you will be a stronger person and posess powers that you never knew you had. I will pray for you during your time of need.

Mike

illead's picture
illead
Posts: 524
Joined: Aug 2012

Hi Amanda,

     Yes, you will find very kind and concerned and supportive people on this site.  It will help you to go here everyday and just read even if you don't feel like posting.  My husband has Mantle Cell, a rare form of NHL.  He will be in remission a year in Feb.  He was very sick at the time of his diagnosis and in Stage IV but had Bendamustne (Treanda)/ Rituxin.  He immediately rallied and made continual progress.  We know this must be overwhelming for such a young one.  It's hard that others don't understand but did we before it entered our lives?  So don't take their seeming disinterest to heart, they just cannot indentify with it.  In the meantime take one day at a time and appreciate the good things of that day.  Soon you will be feeling better.  Lymphoma is easily helped by treatment and you should be back to your old self in a short time.  In the meantime, talk to us, we are always here and Jim is everyone's cheerleader.  Our thoughts, Bill and Becky

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi Amanda,

 I'm so very sorry you have to deal with cancer at such a young age...just breaks my heart! You are stronger than you think sweetie, and as bad as it seems and feels right now, you "WILL" get better. You have youth on your side and plenty of time to fight this cancer back. There are many ways to attack this, so stay strong and keep the faith. Please come here anytime when you are scared or feeling down and we will be here for you. My thoughts and prayers are with you dear one.

Much love...Sue (FNHL-2-3a-6/10)

Chris17's picture
Chris17
Posts: 116
Joined: Oct 2010

Hi Amanda,

I know exactly what you are feeling, i was first diagnosed in 2008 folliculat non hodgkins lymphoma stage 3, went through RCHOP, and 2 yrs retuxin which i finished in Oct 2010 when i joined this site. This past August i was rediagnosed again, and i just recently finished retuxin and a zevalin infusion, i will beat this again, i know you are angry, but when you consider the alternative, i would chose treatment every single time, i refuse to lose, i will keep fighting back, you are young, God doesnt give us more than we can handle, if we can get through this, we can get through anything life throws at us, i got the funny looks etc when i was bald, but i wore the coolest looking scarves, and i saved a ton on shampoos and conditioners, best part of all was, i didnt have to shave my legs anymore!!!

I think keeping my sense of humor while dealing with this has kept my sanity,and talking about this does help, but talking to others who have been through it helps even more, keep posting Amanda, this is good therapy, it may not seem like that right now, but it is, im going on 5 yrs fighting this and if it takes another 5 i will keep on fighting, i did the relay for life last summer before i was diagnosed again, and i just signed up for this summer, i had the best time ever, i met so many people who were in treatment and still made the relay, awesome people, ok i have rambeled enough, please keep posting, the people here are the greatest , and will listen, take care and dont give up!

                                           

                     Chris 

GKH
Posts: 299
Joined: Jul 2012

Amanda

My daughter, my pride and joy, is also 23. I have FNHL stage 4 but so far have gotten by with only Rituxan. It looks like my easy ride may be over. My family says its eery how distant I am from the gravity of my situation. But little do they know I have some of the same emotions you describe. Being such a novice at this I benefit much by seeing the strength of the members here. Lets be honest about it - having cancer sucks. However when you here the stories on this board and see the good cheer, sense of humor and optimism it inspires me to think I can overcome what lies ahead for me in March. You are young strong (did I forget to say good looking?) and will triumph. I think Jims advice to take it a day at a time is an excellent approach.

best of luck!

garry

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

Amanda,

I'm so glad you found this sight.  There are so many kind and caring people here.  And they understand what you're going through since they've been there.

I was dx in 2010 with Stage IV Marginal Zone NHL.  Have had chemo twice now.  Currently in watchful waiting.  The people on this sight have helped me in ways they don't even know!

This journey is unique to everyone but what is common is anxiety and depression.  How could it not be?  This is hard.  I am especially struck by your young age.  You have so much to look forward to- even though right now it may seem hard to see.  As many others have said (better than I can) even though this is a hard fight- it's SO worth it.  And I agree that maybe medication or a therapist can help you to work through all of the jumble of feelings you are experiencing.  This "thing" that you are going through sure isn't fair- and I wish you never had to feel what you are feeling.  But my life experience (I'm just a "tad" older than you -60 !)  had taught me that the best life lessons I have had are usually the hardest to live through.  So maybe this mess that you're going through right now will make your empathy for others so strong that it will guide you in your future.  Not a bad thing or way to be.

So I want you to know that you are in my prayers.  Prayers for healing for your body, mind and spirit.  You're a beautiful young woman and you can do this!  I just know it.

 

Hugs,

Donna

beloven
Posts: 1
Joined: Jan 2013

Hey there 'Manda,

I am also new here and feel like I'm trying to find my way as well.   It does seem to be a number of nice people here with g-reat advice. Just hang in there and take it a day at a time. Don't sweat the small stuff and try to look at the bigger picture. That helped me a lot when I was doing my treatment. There were many things that I had to change or let go of, but that was ok. There are still a lot of stuff I've had to change or adjust...but it's still ok. During that time, I took pride and pleasure in zooming around the grocery store in the motorized carts, seeing how close I could actually get to the register without taking someone out. I learned that just because I had black hair before it came out, that I could experiment and change who I wanted to be on a daily basis. Sometimes, it would be brown eyebrows, other times black eyebrows, or I'd try to draw them in a different shape. Try to keep fighting and know that others can relate to what you are going through. You are not alone.

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Good story,bloven and I like you sass and attitude!  Big ole hugs to you.  -Jim

Oh -and some people at the grocery store deserve to be "taken out" Tongue Out

 

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