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To hell and back...

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

One year ago after many doctor visits, scans and biopsies I was diagnosis with Follicular Lymphoma.  I had a swollen lymph node in my neck.  Upon arriving home from a funeral I learned my Doctor was trying to reach me, he was in South Korea.  I knew it wasn't going to be good news.  It was 2:00 in the morning his time.  When he called there was static on the line so perhaps he didn't say I had cancer after all but he repeated himself and immediately I became a member in a new club that I didn't want to be in.  After more scans and bone marrow biopsy, I had a needle off the record moment...... stage IV incurable.  As a 48 years old mother of two, I instantly was relieved that this happened to me and not my children or my husband.  Then three weeks after my diagnosis the unbearable news came, my father was diagnosed with Mantel cell Lymphoma.  I had not shared this horror with my family or friends and only recently told my children.   My father and I were supposed to have treatment the same week.  I rescheduled it so I could be with him.  Still no one asked me about the scar on my neck?  I witnessed my fathers treatment which almost killed him, then I had to start my own.  I had to make excuses why I wasn't at the hospital on treatment days.  I also lied because I had to wear a mask because my blood count were so low and I was neutropenic.  I'm sharing my story because my family still doesn't know about me, I fear it would kill them.  I live with this everyday and so much more.  After a month of treatment and my father was stable, I left to recuperate in Italy for a trip I had planned a year earlier.  I didn't really think I was going to make it until the day before.  I had every intention of sending my family off with out me but the stress of my cancer, my fathers and hiding from everyone was more than I could bear.  I knew I needed to go in hopes to calm down enough for my treatment to work.  Since then there have been ups and downs.  As of today. I only told a few friends, my family is still protected and know nothing.  I'm not sure how living with this is going to be.  It's been one year.  I had great success with my treatment but fear what tomorrow may bring...

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I failed to mention something about stress.  I understand your need to keep this under the radar but make a promise to yourself to stay away from all stress as much as possible.  Stress feeds the monster.  We have something in common, having cancer wasn't the only major life altering stressor.  I worried about my two young children, my father and protecting him from my diagnosis, my mother and lastly me and treatment.

When my daughter was born, my little peanut had medical problems.  I won't get into them but suffice to say it was beyond stressful. She was on a heart monitor for two years and had a breathing issue. I didn't sleep for months, even hired a nurse so I could.  It was that bad.  Today she is perfectly healthy and we have an incredible even ridiculous and wonderful bond.  She was twelve when I was diagnosed.  My son is my first born, need I say more.  I love him to infinity and beyond as Buzz Lightyear would say.

When my daughter was sick I learned something about strength, when I was diagnosed I mastered it.

You can hide your cancer, kick it where the sun doesn't shine and raise your beautiful grand babies.

Learn to walk away from what you can not change, work on you.  Think of all good things, laugh a lot.  Positivity and laughter are so healing and do I dare say conquering.

Best to you!

Anonymous user (not verified)

the "and back" part.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

You're kind GKH.  Thank you.

When I wrote that I still had my father.  August first I was forced to let him go, quite literally  (I was holding his hand) 2:33 am.  Today I may be back, only broken.

All my best...

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

but you are less broken each day. When I first talked with you and you told about hiding your cancer from your family, I thought How?

I was new to this cancer thing then. It's been 10 months and I realized lately that if it weren't for my hair still being gone, and all the medical appointments, I could easily go through my days pretending it never happened. I thnk I am beginning to understand how you were able to interact with your family and not tell them about the cancer. I still am in awe of you having done it. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

your words mean a great deal to me although I don't feel worthy.  I didn't do anything you or anyone else would not have done.  Thankfully you didn't have that journey.  When I read what you had written I was moved not only by your kindness and generosity but then realized how few people actually know....  

Twisted but not all that bad, disappointing but really appreciate/needed to read that.

Everyone of us has a story, it's difficult whether you and your father were diagnosis within weeks of each other and you have to hide this ridiculous and even horrific ordeal or not.  I'll be honest it was horrible but I had to move forward.  I know life will throw "stuff" at at me but it's what I do with the "stuff" that matters.

Best for last.  Yes, less broken each day.  How I wish things were different and my eyes were spared what they witnessed.  My father truly was a Great man and I need to stop being selfish and celebrate who he was.  I guess I have weak moments and this 40+ year old woman, is still "his" little girl.

Thank you again.  Truth be told I'm in awe with you.  Have been from the beginning, with how you work and deal with this "stuff" the way you do!  Amazing.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

We each have been able to find the strength we needed to deal with our situations.

With me being so open about things I have had to deal with relatives on my husband's side who hear the work Cancer and immediately have the person dead and buried. One young person who is not in my email group, gets his updates from other family members. Yesterday he contacted me asking if I was dying because he had heard I was getting worse. 

So there are times I think about you and feel that not telling everyone you know was not a "bad" idea.

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I see what you mean.  Oddly as I was being tested before I was diagnosised, a friend of mine who is rather famous had a recurrence  of his cancer.  It was all over the media, prayers were coming in from all over.  Selfishly it scared me because I had like four people who knew and I wasn't sure if they prayed!

I've come a long way since then.  My cousin was diagnosed with prostate cancer, my father of course right after me and then my maid of honor at my wedding was diagnosis three months after me.  I witnessed the love, care and concern they all received and noticed like you a few times when they wished for privacy.

No matter what its hard, I don't know how I pulled off Christmas last year but I did.  I recall listening to complaints at my dinner table because I wasn't attending every festivity bla, bla, bla....  I had treatment ten days before Christmas, my dad was not well and people complained about the darnest things that had no worth.  In those moments I wished I could have told them.  How ridiculous it was and yet I couldn't be mad for they didn't know.

I have learned not to complain since having been on this road.

I'm trilled you're going to enjoy the holidays then after it all, seems like a perfect time to kick butt so to speak!

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

As warriors all we can do is keep moving forward. I find that seeing my kids is more important to me now than before. Before if I didn't see one of them for a month or more, well they are busy. Now I want to see them at leat once a month. They are all adults and have their own lives and I talked to them via text or online, but I want to see them, face to face too. With the holidays I get what I want without telling them.  ha-ha.

I hope you get to enjoy the holidays too.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Yes, be with your children!!!!!!!

 

love this.

 

From one warrior to another, I often tell people I love who are struggling at work, in their troubled marriages, traffic problems etc......

When there are nothing but storm clouds looming, in the wake of HELL and a surging sea;BE YOUR OWN RAINBOW!

I have nothing but that.  Ha, ha, they have no idea where I'm coming from but you do ;-)

AMEN.

You too have come a long way now, no one can take away your strength; it's in your core now.  You own it.

 

Anonymous user (not verified)

if I were a doctor, and I am not, I would say you have PTSD. You may want to look at treatment for that condition. In any case, best of luck.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Though I don't have PTSD I do work with someone.  Not having much support or opportunity to vent, I find it a great outlet.  Wonderful in fact.  I'm great at being positive and helping others but TERRIBLE  at taking care of myself.

I was my father's only daughter.  I have three brothers.  This shared lymphoma diagnosis at the same time seems cruel but as I type this right now I can honesty write that I'm glad he wasn't alone in this because even though it was in secret I "knew" what he was going through and he wasn't alone.  There were shared glances that he must have wondered about then, perhaps he knows why now.

Thank You.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I'm with you on this. Somewhere between the perforated bowel and second R-Chop it hit me that I have to be my own caretaker, cheerleader, warrior. It took me a while to really get into this mindset but I did. More so at home than at work, although my co-workers remind me to put me first, work second. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Cancer gave me awarenes, making me stronger than I ever thought.  So are you, we all are.  

We had to dig deep.  Then deeper.

We never asked for this.  Yet here we are  WARRIORS & SURVIORS! 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I read your post yesterday and thought ok.

The last 2 days I just felt down. Figured out last night there were several reasons. Today on my way to work I was feeling better and suddenly remembered your "Being your own rainbow". As soon as I thought of that another thought came to mind - "We are the pot of gold at the end of the rainbow.". Today ended up being a good day.

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

it was already there when you posted about being your own cheerleader, caregivers and warrior.  Some days are so tough, right?  I hate the feeling.  Heavy, almost depressed bla, bla, bla...  I'm not that girl.  As soon as I recognize it, on really bad days; I will flip it the bird ;-). Sorry but true.  On normal bad bays, I do the same, kidding.  I just want to breathe, happy, peaceful full of life breaths because that's what I want to do.  Breath easy.  

I may not of had what most have on this journey but I do have a tiny bit of support and a whole lot of crazy wicked drive...  My thirteen year old says I'm a freak of nature and she's not laughing when she says it!  Kid cracks me up.

If you can be everything to yourself, the rest is bonus.....  Rainbow and pot of gold!

I wish I had the bonus but so glad you have BOTH!  Now kick the bad stuff to the curb, it's not welcome anymore.  In the mean time enjoy the family, tradition and recipes.  

When it's dark be your own light.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Before all this I worked with children with cancer.  Setting up photo sessions and giving them and their families  a beautiful portfolio.

Saturday the hospital called, a young girl is close....  They requested a session.  Ironically it's on the same floor where my father was this past summer.

On his birthday, tomorrow  I will be giving this family a small token for their soon loss.

This is going to be Hell.

Then I have to get a CBC I'm neutropenic.  I think I miss placed my boxing gloves...

Anonymous user (not verified)

try hard to to look at your situation from a detached point of view. That is what I am trying to do. I do not reveal my situation here but it is serious. Accept the fact we all are mortal. Let go of your father. Try to focus on the here and now. That is all we really have. In fact that is all we have ever had. Bless you. All my best.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Detachment allowed me to validate a piece of me privately and do what I needed to do. The irony of being on the same floor and the dire state of this young girl on my father's birthday.....  Crazy but "doable" thanks to you and Linda.

I brought the nurses treats in my Father's name which was perfect and did what needed to be done.

The here and now statement and mortality are perhaps both a blessing and curse...

Blessing and all my BEST to you on your journey and may the serious referance made be obliterated!

Have a wonderful Thanksgiving. 

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Heck with the boxing gloves. Get that armor on. 

You already know you need to focus on the young girl and her family for the photo session. Put on a brave smile and give them a beautiful portfolio. 

Then head home, wish your dad a happy birthday and talk to him a while. Hopefully that can help you calm down before the CBC.

Good luck on everything.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

never coming off again!

THANK YOU.  You have no idea how much you and GKH helped.  I just needed to read it.

You can't imagine how the morning went.  The young girl who we were doing this for was not doing well and didn't want to come down.  Eventually she did and everything went well except what stuck me funny was she was alone.  I never know any details but I did know she was losing her battle at nineteen.

She stayed with us long after the shoot and we learned she lived with her best friend and calls her best friends mother her mom.

Before I left I was compelled to go down to her room and say good by.  There were no cards or evidence of anyone being there, she was in bed and detached from the world.  Completely alone.  I realize who she calls family must have been working, in school or not feeling well. ??? 

I have every intention of going back and visiting her as long as I can.

 

I have much to be thankful for, no more pity parties from me.

May you enjoy and peaceful and relaxing Thanksgiving (that maybe an oxymoron?).

In a quite place in my mind, I will raise a glass to you both wishing you all my very best!  I fact I will make it a big glass and cheers all of us survivors ;-)

HAPPY THANKSGIVING!

 

P.S. my counts went up, no shots, nothing.  My ONC asked me if I did anything different, asked me if he had me get a Vit. B12 shot, folate, new vitamins etc..... ???  After his friendly interrogation and getting the attention of all the nurses around him, I told him I have consumed a ridiculous amount of Kale.  It's still growing like mad in my garden.  His eyebrows hit the ceiling, he shook his head and said I need to do a commercial.  We all laughed.  I go back on the 4th.

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Glad to hear your counts are up. That has to be helping you to feel better in many ways. I know Kale i shealthy but I have a problem with green things. Excet for peas. 

You probably have done more for that girl than you ever will know. You went through what you did without telling most of your family but you still had some family and frineds know what was happening and there to gove support. The poor girl, at nineteen and dying with almost no one to be at her side. I think it is good that you plan on visiting her as much as you can. 

I will drink a toast to you tomorrow and that girl you did a photo shot for. May you bring her some level of comfort to her. 

Simon24
Posts: 45
Joined: Oct 2015

Hi,

   I'm glad to hear your counts are up.  How do you prepare your kale?  My husband has just finished R-CHOP round 6 and intrathecal round 4 and his counts will be going down any day now.  He loves kale and unfortunately, I haven't eaten much of it.  He has been known to eat it raw, but if there is a good way to prepare it maybe I would eat it with him.  I'll prepare anything he likes, but I'm just curious if there's a tasty kale recipe I can try.  You are wonderful to visit that young lady.  There is no greater gift to someone than spending time with them.    Simone

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Hello Simone,

I'm sure I had a infection that I didn't know about for a few weeks that caused my counts to fall.  The crazy amounts of kale and juice I consume most likely helped my immune system and kicked the infection aside and allowing my counts to rise.  Whatever the reason , I'm thrilled they went up.  I'm a year out of treatment so I have no idea why my levels were that low.

Kale is an interesting superfood.....  

In the begining didn't care for it and ended up putting it into smoothies.  It was hidden in between berries of all kinds, beets, ginger, apples and truth be told whatever was in the refrigerator.  I like smoothies because I ate it raw and received the most nutritional value that way.  I still do this but not as often as I should.  Sometimes I will scramble some eggs, sauté some Kale and mix in Parmesan cheese.  I also bake the eggs, kale and leeks, tomatoes peppers etc...in muffin tins.  My favorite by far came by accident. I planted several organic greens in my garden this year.  One being Russian red leaf kale.  I never had it before.  I have been eating this for breakfast, as mentioned, lunch chopped raw in a salad form with mangos, pepitas etc... Or my favorite soup!!!!!,  this is a tasty hardy kale.  A cross between kale and arugula.  I also sautéed it with garlic, olive oil, cannelloni beans and lemon or roasted it. You name, it I may have tried it.

For the soup

I chop carrots, celery onions and sauté in a olive oil and two bay leaves.  Then I add garlic. I press it with a knife to break it, let it sit then add it to the pot in largely chopped pieces.  In comes water, San Marranzo tomates crushed.  Then lots of chopped Kale.  I try to alway keep it firm, never over cooked for nutritional value.

 

enjoy!

 

 

Simon24
Posts: 45
Joined: Oct 2015

Hello,

    Wow!  I had no idea there were so many ways to prepare kale.  I will definitely try some of your suggestions.  Thank you for taking the time to share them.   Simone

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