i need to write a letter and need help

apple

my baby bro has been diagnosed with stage 3 lymphoma.. we were hoping for better but grateful it is not stage 4.  I want to write him to help him thru this awful first month.. the agonizing moments of thoughts of mortality, worry about his kids.  It is hopefully a low grade, slow growing cancer (that's what they think).  He is having tests done and will find out in a couple weeks his course of treatment.

he's a mathematical guy and probably fixated on prognosis statistics and I want to give him hope, positive thoughts and encouragement.

what to say, what to say... if you all have any ideas, you stage 3 women.

edit:  and any stage woman is welcome to comment on any of my posts any old time

janincanada

Oh Apple! what a difficult and loving thing to do.  I would start actually talking about the stats if you know what they are.  Focus on the percentage that survive/beat the disease.  Remind him that stats are based on a sample and that there are always cases that are not explained by the stats. If he is a sports guy, remind him of the many times the underdog in a sport beats the odds and surprised the so called experts.  If he likes to go to the casino it is a classic example because if we listened to the stats noone would ever go or buy a lottery ticket. That is what we all want to be when mortality rates are discussed.  Once you've led into your letter by speaking to his love of numbers talk to him from your heart....baring your soul and sharing your thoughts and experiences.

Be prepared for your emotions as you write the letter.

everyminute

My friend sent me a text message every day through treatment that said "This will not defeat you"  In fact I now have a website called www.thiswillnotdefeatyou.com which I am using for my personal trianing for cancer survivors - but anyway back to your situation...

There is always hope. Always. 

I dont know if you can convince him of that at this point, I know that I didnt feel very hopeful in the beginning.  But you can tell him you have been in his shoes and you know where he is and that you love him so much that you will go back to that place and walk out of there holiding his hand again. I know you would do it for him and maybe he does too but it is always nice to hear.

sending you strength and love. 

NancyD

Remind him that we are all unique, and he is not a statistic.

KerryMac

The thing I remember most from those crazy few weeks were that a few people just sent little notes every day or so. One friend wrote me an email every morning to make me smile when i was waiting for my test results - it was so thoughtful, I will never forget that.  So, I think it is not really as important what you say, but that you just keep saying it! 

clariceak

Kerry, I agree!

My wonderful sister, who had bc before me, sends me an email every morning before chemo.  Those small gestures do mean alot.

I'm sorry about your brother, and if he is fixated on statistics it might be good to remind him that the published statistics don't reflect the latest treatments.  Also everyone gets lumped together regardless of the level of care they receive, the positive or negative aspects of their own health aside  from cancer.

Bugs

Apple,

I have a male friend from church who went through lymphoma 2 years ago.  He would be happy to email your brother and even talk to him if he is interested.  If you would like, PM me your brother's email addy...or I can have him send it to you and you can send it to your brother.  

Just a thought as I think men deal with these emotions so differently than women.

jenn3

I have a friend, who to this day sends me a weekly card just to let me know I'm in her thoughts. Most of the time it's short and sweet, but other times there is a little more added.  And............now that I'm back at work we see each other daily.  Getting those cards each week brought/brings a smile to my face.

AnnNYC

Apple, there is a book I love by Stephen Jay Gould called "Full House."  It's all kinds of ruminations on statistics, set off by Gould getting diagnosed with abdominal mesothelioma at age 40 -- his doctor didn't even want to tell him any survival stats, but he looked them up and found "8-month median survival after diagnosis."  Well, he started calculating that there must be a lot of "outliers" on the right-hand side of the curve (longer than 8 months), and decided there was no reason he couldn't be one of them.  [As it happened, he went on to live 20 more years, and died of something else.]

The essay about how he dealt with the "8-month median survival" statistic is called "The Median Isn't the Message" -- and here are a few places to find it:

http://cancerguide.org/median_not_msg.html

http://cda.morris.umn.edu/~benw/handouts/1.2.The%20Median%20isnt%20the%20message.Stephen%20Gould.pdf

Anyway, besides that essay about "The Median", the whole book "Full House" has a lot of other essays about statistics, evolution, baseball, that have nothing to do with cancer and that a "mathematical guy" like your brother might really enjoy...

SpunkyGirl

Apple,

So many good thoughts already.  I agree that you should focus on telling him that he is not a statistic, he is strong, that he is an awesome dad, and that you will be with him every step of the way.  You probably know his sense of humor better than anyone.  Find things, or share things, that will make him laugh.  Can you get anyone around him organized to help take care of his kids or cook some meals?  Does he need that kind of help? 

You're a great sister.

Bobbie

YATCOMW

Ditto......my sister did the same thing as above......she emailed me at my office email an inspirational quote every morning......some of them I have already shared here before but I really appreciated the fact that she was thinking of me each day and sent me something to get me going.....and get me through it.....

I loved the Stockdale Paradox which I have shared with you before....

I loved..... " Courage is fear holding on a minute longer.  General Patton

I loved..... " A woman is like a tea bag--you never know how strong she is until she gets in hot water.      Eleanor Roosevelt 

Of all the forces that make for a better world, none is so powerful as hope.  With hope, one can think, one can work, one can dream.  If you have hope, you have everything.

 Okay....you get it.....but it really was something that genuinely helped me each day.  As cancer is something you battle every day (mentally) certainly in the beginning.

Hope this helps.  He continues to be in my prayers.....slow growing sounds good.

Jacqueline 

lkc

Hi apple, so it's not leukemia.

 Ok< Lymphoma is also " Doable" What kind of lymphoma?

Please tell your brother not to read " stats' Tahey are ALWAYS oudated and not reflective of current tX

apple

wonderful suggestions...

still stymied, I wrote a quick email to him this morning and he left a message on my phone that said.. thanks for the note of encouragement.. he's such a sweety.  it was perfect.  I really like the idea of sharing bits and pieces, quotes or encouragement over the long haul.

lkc.. they won't know for 1 to 2 weeks what kind of lymphoma he has.. as for now it's supposedly low grade, stage III.

septembersong

I second AnnNYC's suggestion re: Stephen Jay Gould's article. It gave me a great deal of encouragement as I finished treatment. It's a good choice for someone who's comfortable with statistics.

You're a kind, loving sister, and I'm sure whatever you choose to do will be a comfort to your brother. God bless you both.

YATCOMW

One of the things my family did for me as they don't live near by .....they created a chemo bag.

 

The bag/tote was beautiful and inside was an ipod loaded with inspirational music to listen to during chemo...... Lance Armstrong's book...It's not about the bike.....snacks.....juice boxes......and since I was getting 9 treatments of chemo (6 TAC and 3 FUMEP) there were 9 very cute/inexpensive wrapped gifts.  So at the start of each treatment I could unwrap one of the gifts.  

 

I just loved the whole idea of it and have since done a bag for others going thru this.......they have always loved it and asked me how they could thank me and I have said....pay it forward....help the next gal.

 

Just another idea on how to let him know you are thinking of him.

 

Jacqueline 

apple

i have some more sad news to report.  I hadn't talked with my sister since my brother received his diagnosis and called her this morning.  She just found out yesterday that she has a 5 cm tumor on her liver that needs to be removed VERY soon.  She is furious and terrified.  I am scared for my siblings.  There are 9 of us and me - 53, bro -  45, sis - 48 and bro - 41 have cancer (altho my sister's is not confirmed).  She has told only me and swore me to secrecy.  she's not a net person too much.  Bro 41's (leukemia) has been in remission for 3 years now.

so

jenn3

Apple - I am so sorry to hear about your sister.  I will keep your family in my thoughts and prayers.  (((HUGS)))). 

clariceak

I'm so sorry your family is going through this.

Bugs

Apple, I am so sorry!  Your family will be in my prayers.  My friend that had lymphoma would like to send your brother a letter.  Could you PM me either your address or his address?  (snail mail)

Bugs

karen1956

((((((((((((((((apple))))))))))))

KerryMac

Oh, apple, I am so sorry.

apple

a bit of an update..

they determined he has leukemia and lymphoma.  the leukemia is also in his bone marrow (which i think suggests that it may be fairly well established... both stage III.

however, he told me today, that he virtually has no physical symptoms... now that they have mentioned it, he has noticed that his glands are swollen everywhere.. in spite of really high/low blood counts, he feels just fine.. runs and stuff.

they don't even know if they'll chemo him yet. they'll at least wait a while to determine how aggressive his cancer is.

Altho at this stage and this disease (it's actually a fairly common combo), it's a given that it is not curable.

We have both researched this extensively and really don't even want to think about how long he'll be around.

He does have a great attitude.  Funny, he and I have always had a strong bond.. we are the smarty pants in the family.

YATCOMW

Apple

wishing God gives you and him tons of strength, peace and a way to kick the cancer's butt.

Prayers are on overdrive....... 

Not every sister and brother have that kind of bond.....for that you have been blessed. 

Jacqueline 

KerryMac

Oh apple, I am sorry that the news isn't better.

At least he is feeling well, and at least he has you.

AnacortesGirl

I am sorry that this is the news you got.

I have one brother who has been one of the 3-4 people that I confide in with my real feelings and the real details of BC.  We can look at each other in the eye and say I love you.  Brothers can be very special. I'm glad that you are there for him.

Diana63

Apple, I am so sorry, my prayers are with you and family.