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Peripheral T-Cell Lymphoma, not otherwise specified (involving bone marrow w/ cytotoxic phenotype)

MChantal's picture
MChantal
Posts: 102
Joined: Apr 2013

Finally, we got the doctors final note from the Mayo Clinic and Kyle is a member of the PTCL-NOS family.

 

 

To be quite honest, I am feeling really down and depressed today. It started with me waking up and wanting to work out. That turned into me excersing in rage and screaming out of anger, "@$#$^@#$@ CANCER!" All the most terrible things I could think of to say to cancer. WHY?!?!?!

I walked outside and sat with my dog. Yes, I cried. I am crying now again.

I than found my old phone and decided to look through all the pictures from even just last year around this time. WHY?!?!?! Kyle and I were living our lives like normal 22 year olds were suppose to with such hopes and dreams of the future. The least of our problems was figuring out how to make it to through the next month with a couple dollars to save and spend at the movie theater.

We are not bad people :,( Sure we have made bad decisions as young adults would. Maybe drank a little too much in Vegas, was jealous that some people had to too easy and shoot, even upset if we didn't get the grade we wanted in a certain class. Other than that, we were doing and trying to survive like we should at this age.

Now....Cancer. I will never understand this.

I just want my Kyle back. I refuse to let this cancer take him from me. I refuse. I just want to be back last year, sitting beside the pool with a margarita in our hands, talking about school, what we want to have for dinner, laughing about how we first met and what we want to name our children.

Not cancer.

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Sooo sorry Michelle n Kyle,

I read your post and just couldn't hold back my tears :( 

I really hate cancer too!!! It takes sooo much from people...

Michelle stay strong and do not lose faith! There is another member here with the name of Po...I think he has the same type as Kyle's and he's doing good! Hope he can comment on this post! Take care sweetie ((((Huge Hugs))))

Sincerely,

Liz

jimwins's picture
jimwins
Posts: 2004
Joined: Aug 2011

One of the hardest things for me to deal with is when cancer enters the lives of young people or children.  I was in the hospital for my treatments and I often took walks - occasionally to the children's cancer center and it would sometimes break my heart.  I also saw a lot of joy and hope too and won't let myself forget that.  

If I were there I'd cry with you both and give you the biggest hugs.  I wish I could make you feel better right now - just know we understand and thank you for sharing with us -  that's what we're here for - each other.

The war is just getting started- you both are going to find out you are a lot stronger than you thought and you have many warriors fighting with and for you on this site.  

Feeling your pain and sending warm, strong cyber hugs to you guys,

Jim

DadysGirl
Posts: 315
Joined: Aug 2011

Sweetie I think I was the first one who responded to your first post, I had felt so sad when I read it... I tried to find positive examples online for you... I know how difficult it is I lived it with my wonderful Dad, but you know what I write this with tears in my eyes, Kyle is alive and he is with you, no matter what please do not forget that and try your best to cherish every moment... You will have many... Yrs together and will grow old together... Be strong for each other, there will be days when you are at the bottom but when you see him down you will find the strength and smile make jokes and think positive so you pull him up to make sure he is feeling stronger and there will be days when he sees you so down he will be playing the same for you... But you both need those days to fight and continue living with such awful disease as cancer... Wishing you both and everyone fighting this awful disease nothing but the best... One thing that may put you at ease I hope is pray and believe... That is all we can do... Also don't forget he is young and he has someone as special as yourself besides him who truly cares... All that is more strength to fight better and come out as winner God willing...

illead's picture
illead
Posts: 505
Joined: Aug 2012

Hi Michelle,

     I wish I knew what to say.  I have been thinking of you both since I read your post yesterday.  I am so sorry,  I know it was news you did not want to hear. None of us wanted to hear it either.  One thing we know is that nothing is cut in concrete when it comes to cancer and especially lymphoma.  When Bill was diagnosed with Mantle Cell, it was not good news but in a short time, there has been much more learned about it and much more reason for us to be optimistic.  With Kyle being so young and healthy otherwise, I think you have a lot in your favor.  I am hoping PoGuy will answer soon.  I am thankful he is in this forum as he is very knowledgeable about this lymphoma and very caring.  I hope that maybe you are in corresponcence with him privately.  I know that you and your families are in shock and disbelief right now, but I think too that you are fighters and soon that spirit will kick in.  We are all here to help and be of any support that we can.  We are a family of strangers but not really.  We care.  You are in our thoughts and prayers.  Becky

Rocquie's picture
Rocquie
Posts: 487
Joined: Mar 2013

oh my dear, dear Michelle, I am so sorry to see you feeling so down and depressed. That was yesterday and perhaps you feel a little better today? What you are feeling is perfectly understandable and normal, though it doesn't help at the time to know that. Venting while working out sounds very therapeutic. So does crying.

The deal you and Kyle have been handed is very frightning, most especially because you are both so young. There is no way you can or should see this as a gift right now, but you will gain more strength and wisdom from this than you ever dreamed possible. You and Kyle will become closer and your love will grow deeper. Ultimately, you will both be just fine.

If we were together, I would let you cry on my shoulder. I would give you a big hug and I would cry too. Let's let Kyle and my husband join in and they can cry too. My doctor and several nurses have cried with me. To see and feel compassion really helps.

My prayers and love to you,

Rocquie

 

 

MChantal's picture
MChantal
Posts: 102
Joined: Apr 2013

It is definitely true, as Becky stated, this site is a family of strangers. I am so blessed to have a family of strangers such as you all. So blessed.

I had a bad day yesterday. Just I hate to say it, but, I was upset with God. I was upset with this whole situation. That is passed for now though. I need to realize that God does put these obstacles in individuals lives for some of the strangest reasons. I was selfish yesterday, to be asking God why this is happening to us at the age of 23. I do not need a reason to be mad at God.

Some signs are shown in the most interesting ways tho. Yesterday, I proceeded to go to a haircut appt. at the beauty salon after my hectic morning. As I am sitting there, a Priest walks into the beauty salon...a beauty salon! Personally, that does not happen often where a man of God walks into a beauty salon rather than a barber shop. Maybe that was God's way of showing some type of actually presence.

Kyle spoke with an Aflac representative yesterday to see about getting disability through them as along with is job. Unfortunately, the Aflac rep. was unable to do much help. Finally, Kyle told the rep. the reason why he was trying to get the plan, due to being diagnosed with Lymphoma. The rep. turns to him shakes his hand and says, "Welcome to the club" as he is a Lymphoma cancer survivor of 3 years now. They ended their conversation and the rep. apologized for not being able to help as Kyle replied with an apology for "wasting his time." The rep. responded with, "Maybe this was meant to be, maybe you needed to meet a Lymphoma survivor."

God works in mysterious ways.

Thank you all, for being the most sincere and genuine people I've yet to meet. Thank you from the bottom of my heart.

po18guy
Posts: 237
Joined: Nov 2011

When I see infants in chemotherapy; when I see toddlers in chemotherapy; when I see elementary school kids in chemotherapy; when I see a 12 year old boy whose new immune system is attacking his skin heading to the transplant center with his battle-weary parnets, I realize that I am blessed and that there are no guarantees in this life. I remember that, when I vowed my life-long love to my wife, that I was agreeing to the "worse, poorer, and sickness" in those vows as well as the "better, richer and health" that is also in them. I am happy for each day, and for the blessing that PTCL-NOS has been to my life and to my marriage. I have not been angry one moment. Life on the other side of this will be even richer than you imagined. I am now thanking God for adding this depth of experience to our married lives. 

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