Hi kgirl and welcome!

First, congrats on completing chemo and the tumors being gone.  Second - I'm so sorry to hear about your Mom!  It's never easy to lose a loved one no matter if it's quick or over a longer time.  My deepest condolences.

As for your concerns (fears?) about aches and pains, that is pretty normal even for those of us who have been at this game for several years (it's been almost 8 yrs for me, longer for others on here) but we've all found that usually the father out you are and especially if you get continuing good reports, you think of it less and less. Except - around scan time even if you have been getting clean bills of health up til then.

Someone on here coined the phrase scanxiety and it's so true!  I believe it's because blood-borne cancers are so tricky to "cure" even though many are treatable and some are now looked at more as a chronic medical condition and treat symptoms as they appear.  But it's still "cancer" and we can't help but be a little (a lot?) frightened about what the future holds for us.

You, in particular, got a double whammy - dealing with your own cancer and then losing your Mom to another form of it.  Double stress, double anxiety.

Try to stay focused on today, it has enough of its own problems.  Deal with tomorrow when it gets here.  When things get a little overwhelming remember to beathe..... breathe.....  deeeeeeeeep from the gut....... breathe........ let it all out..... and repeat as necessary.  Also when feeling overly anxious, try drinking some extra water - stress can be a terrible dehydrator.  And get some motion in your body - walk, clean house, dance....something.  All can help you cope with the stress.

You're among friends here who understand and have been there (are there!).  Post as often as you need sweetie - we're listening and here to support you.

Sharon

Hi kgirl,

Of course I have time to keep talking. I'm good at listening and you need someone to hear you.... keep pouring it all out, sweetie.  That's one of the reasons for the boards and a reason why I'm here.  It's ok - we'll walk along this journey with you.  And wow! what a lot you've had to handle for the last 6 months!  Your own cancer....your Mom's... sometimes it makes me wish God didn't trust us so much with what is tossed our way.  How about you?

Sounds like you have NHL - is it the follicular kind or diffused large b-cell?  I've had both - perhaps even both kinds at the same time.  I've been thru the R-CHOP regimine too (I think that's what you had if I remember the different chemicals correctly).  And it ain't a walk in the park but it's pretty do-able for most people. Glad to hear you came thru it without too many side effects (as I also did).  The hair stuff - well the first time of losing it is pretty shocking isn't it?  I've lost mine totally 3 times and partially/mostly twice now and anymore it just don't matter to me.  I haven't even worn scarves/hats since the 2nd hair loss  I've also had R-CVP, Rituxan alone, Leukeran (oral chemo), and my latest treatment was a combo of ESHAP + Zevalin.  Looks like I'm refractory (have some new nodes that appeared even after treatment and continue to grow the last 10 weeks) and will be seeing my doc mid-September  to see what Plan G is for the 7th round in the ring with this beast. 

I'm so sorry your Mom had a rough time with her chemo.  I, too, lost my Mom to cancer (esophageal metastasized to lungs and breat) but it's been 20 yrs ago now.  She fought the good fight but after a couple of years she said it was enough and now she's another star in the heavens.  Who knows, maybe she and your Mom are chatting away right now....both stars up there shining down on us.  Nice thought, huh? Please don't beat yourself up about not being able to bring her home.  It just wasn't possible and it was nothing you did wrong or that you didn't want her to come home.  She knew....and it was OK.  It was the way it was meant to be. (I've become rather Zen in my middle years). 

It's great that your Dad can have you close by to check on him  - must bring him a lot of comfort and security.  He is a very fortunate guy.  And to have had them both right there for the last 12 years - very, very, nice......  They must have been great parents when you were growing up for you to think of building a place for them for you to "pay them back" for their sacrfices in raising you - seems they did it right.

Alright - back to you for a bit.  Yes, reading too much can scare the bat snot out of a person!  So if you totally trust your oncologist, let them guide you and your treatments and gain knowledge in little bits as you can digest them.  Too much too soon and be overwhelming!  I remember when I was first diagnosed started surfing the web, (unknowingly) found some very outdated info/stats that basically said I could expect to have less than a year!  OMG!  I shut down the computer, said oh hell no that won't be me! and didn't look back.  From then on, I've gone more with my instincts and let the docs deal with the technicalities. 

As for the fears..... you have cancer, cancer does NOT have you.  It doesn't define you.  Stay determined to face any storm that comes your way head on.  Look cancer in the "eye" and tell it that you WILL get up one more time than it tries to knock you down and you will NOT allow it to control your life!  Sure, you'll have to make accommondations every now and then for your tests and scans and you may have to do things a little differently or slower than before (the aches and pains can last for months after chemo even with everything being clear), you may have days you just feel like crud but that can't take away your determination!  Work to that point where you can pretty much thumb your nose at the cancer and LIVE the gift that's called "life".   

Alright, now I've rambled enough.....  those who know me on the boards say it's one of the things I do best!  LOL

I'll be right here (after work hours anyway...) and listening.

Sharon

Hi Barbara and let me add my welcome to the boards.  I'm the resident virtual baker here.  LOL   So what kind of cookies, brownies or muffins do you like?  I'll make sure there are some fresh from the oven when you come back. 

I wanted to comment on something your doctor said to you about the cancer not acting like indolent.  It may be that it started out as indolent and then transformed into something more aggressive.  I say that because that is what happened to me.  I was diagnosed in August 2006 just days shy of my 48th birthday with Transformed Follicular NHL, grade III, stage III.  Yikes!!!  Had major panic attacks for a few days, actually they didn't stop until I had lived through my first  infusion.

I'll share some wisdom a dear friend of mine told me when I was diagnosed, "don't live in the disease . . . it will eat your lunch".  She, herself, was a cancer patient (renal cell carcinoma) and lost the fight on January 10, 2008.  I miss her terribly.  My mom also lost the fight in 2002 from ureter cancer.  All this to say, that what I try to do is live each day, and each day only, to the fullest, and to honor my friend's memory by trying to keep her advice to me.  I deal with my feelings when the crop up and they do crop up, and then move on.  I've learned that feelings demand to be dealt with and that ignoring them or stuffing them only makes them stronger and our pain greater.  Therefore, be real with yourself and your feelings and be determined to have a great life one day at a time.

By the way, I don't think God thinks you're a hypocrite.  I believe that any time we call out to him, he is just thrilled to hear from us.  Don't be afraid of him for he loves you more than you may know.

I so happy that you have been in remission for 18 months.  Yea!!!!!  Happy feet dancing for you!  September 1st it will be 17 months for me.  It isn't longer because I had a minor relapse in September 2007 that wasn't confirmed until April 1, 2008 when the suspicious node was completely removed.  Thankfully, it was the only node affected so no additional treatment.

I think that's enough of my ramblings for one sitting.  LOL  Glad to have you on board with us and sorry you've had to take this journey.

Hugs and blessings,

Jane

Hi Sharon:  We were typing at the same time . . . great minds!

Hi Barbara,

<WHEW!> Home from work...and it's been a bear of a week.  Glad this is "Friday eve" (I like that better than "Thursday"  lol).  They sure are getting their money's worth from me this week.  lol

Don't worry about "all" I've been going thru....I actually feel pretty good most of the time.  And now that my spirit has returned from summer break I'm up to helping out here and there as I can.  It's OK - we kinda take turns leaning on each other around here.  For awhile Jane and I were leaning on each other hoping that the 2 of us together MIGHT come up with almost 1 whole person.  LOL  Lyn (Netnewt) and I have been known to take turns "rowing the boat" while the other one rests.  We all need propping up at times - that's why it's good to be among a group who 'gets it'.  There's always enough around with enough strength to help support those needing it. 

Are you a coffee or a tea drinker?  If not either, we always have lemonade in the summer and cocoa in the winter in our virtual kitchen - along with Jane's yummy baked goods.  And best of all - it's 'figure friendly'.   (Well except when I end up rummaging in the kitchen for real ice cream and cookies.  lol)

Sharon

And Jane....I agree about the great minds thing!!

Hi there Barbara! Another new friend to welcome you.Can't compete with Sharon; we are all so lucky to have her here. I have a longish story too. First of all I lost my mom to breast cancer also, when she was 58 andI was 28. I am now 60.So you can figure out how long ago that was. But I miss her everyday of my life. Now, the lymphoma patient in our family is my husband John. We are married almost 38 years. In 1994 he was diagnosed with mixed (intermediate) lymphoma, some small cell, some larger cells. He started a journey of so many treatments, but his first was CHOP. No R then. He got into a remission that lasted a couple of years. He went through many many protocols in the past 15 years.. He also had an autologous transplant (his own cells taken out, stem cells actually, after very aggressive chemo) and returned to him when his bone marrow was virtually empty from the chemo and he was ready to receive his baby cells. Unfortunately he had three chromosomal abnormalities so getting his own cells back didn't help for more than a few years. More relapses. More treatments. Eventually it turned pretty aggressive and he had one tumor close to his spine that could have crippled him. It was recommended that he have an allogeneic transplant (from a donor).Luckily both of his siblings were perfect matches; so they used his youngest brother. He could only have a reduced intensity transplant because he had had so much chemo all these years and also was 59. At these ages they tend to do the less aggressive transplant conditioning but it did the job of wiping out his immune system and his brother's cells engrafted successfully. that was three years ago and no signs of the disease being back. After 15 years with this I can honestly say I have gone half crazy. I have trouble coping with just the IDEA that I could lose John to this disease. Every single time we go for a scan I get physically ill for several days. I refer to my mental state as having back burner and front burner anxiety. I try during normal periods to just be grateful and feel like we have a chance to beat this, although the What If Monster, is always peeking over my shoulder. But when it's scan time, or blood work time, it goes onto the front burner, boiling away, something I can't put aside at all. So I completely understand how you feel. John is like Sharon. He has always had a very Zen approach to this."I'll do whatever I have to do to beat this" and "Why worry in between? I want to enjoy my life and not destroy it with worries". Even when he has had to face very serious procedures he went in calm saying "I have no control over this, so I'll just relax and expect all will be well". Not me. I had to start Xanax and anti-depressants. Don't be afraid to ask for medication if your anxiety gets to be too much. Also, you need to communicate with your husband. He is going to be your best ally and cheerleader. Lymphomas are odd; they can go away and come back and the pattern can take so many years you can end up with a normal life span. Try meditation and Sharon's suggested breathing.They help. Sometimes I wish we could all sit down at that country kitchen table, hold hands and feel totally safe in our unity. Keep posting and don't have any doubts you will be helping someone else. Just your honesty is so uplifting. If you want to write to me my email is julindy122@gmail.com. Sometimes a little one to one support helps. But I know you have beautiful Sharon in your corner and she'll be your best buddy.The rest of us are here for you too. Love, Judy