Our EMOTIONALJourneys, Retrospectively. (Idea for New Thread that should be a Sticky)

[norkdo]

It is now over a year since my diagnosis.

My world is no longer terrifying, tear-inducing, dramatic, and culture shocked (re my diagnosis.)

I am rereading blogs here and there on this site of newcomers including me. My heart goes out to them in their confusion and fear and helplessness. That was me.

I feel so much better now and so much less afraid of metastasis, of dying, of going through the unknown treatments awaiting me...both because of my own experience and reading the experience of all of you on this site. (it wasn't really that bad...it wasn't really that dramatic for me...there was a ton of love and support on this site and great advice and help from the virtual world on this site and from real live people in my life that made it ok. Even the procedures were not as horrifying as i made them out to be on my blog cos my hormones, brain, thoughts, etc. were all under the influence of FEAR.)

I would like all of us to try to help those newbies full of fear by giving them our emotional biographies of our journeys, just so newcomers will not despair.

What about a retrospective thread where we look back, each of us, at how we were EMOTIONALLY.

I look back to the first six months of my diagnosis with wonder now. I spent those months crying in the car or falling apart crying upon meeting with old friends from long ago. Months I spent crying and breaking down. I wanted to cry at embarrassing moments.

I then grew, via the influence of fat-and-anger-making steroids which are given to those on strong chemo regimens, into an angry person, furious with the situation. After those six months I just wanted to be free of treatments of any kind. I'd had a mastectomy/lympectomy, learned I was in a really really serious bunch of categories, had chemo. Rebelled against radiation. Then submitted to all thirty of them.

Hair back in now. All is good. Testing a tiny bit scary, but if I metastasize I know there are many many many drugs and treatments to keep me alive. I have hope, but have the courage now to face other possible outcomes too.

What were your emotional stages in this journey?

[Jackie07]

Hi Nora,

What a good idea! 'Our emotional journeys, Retrospctively'... Guess I'll jump in for a 'group session'!

My emotional journeys started way before the BC diagnosis. The first time I was 'shocked'/frightened into tears was the overnight stay in Westgate Hospital in 1985, merely 7 months after I had arrived at the 'land of the free and the home of the brave' trying hard to pick up the 'Southern twang'. 'Erythema Nodosum' is not a disease - though it caused quite a bit discomfort and the red dots on both lower legs looked really scary. The medical information I received - photocopies of medical journal articles via 'interlibrary loan' through the State Library - answered a lot of the questions. It recommended a thourough check - which my doctors did. It mentioned that the true cause might not be found - which was exactly my case.

So five years later, when my life-long brain tumor was found, I had this 'Ah-ha' moment - the mystery was solved! I was not 'crazy'! There's 'something wrong' in my head! I was more than excited to embrace the surgery, PT, OT, ST...

Another 11 years later, I had three shots of GKRS for the residue tumors that had suddenly enlarged ...

All these had been in preparation for the diagnosis of breast cancer! By summer, 2003, when the breast surgeon (by the way, she's also from Canada) told hubby and me the result of my biopsy in such a delicate way, we were already so well versed in 'miracles' that 'our' 'casual reaction' brought puzzlement to their faces (a 'nurse'[?] was also present). Of course, pretty soon we realized there's a lot more work to be done even though 'it's not a brain tumor!'

Then the long-overlooked recurrence... I was so sure that it was going to be the end of my life - with tears I began to write (in the waiting room of the hospital) a 'farewell letter' to my family overseas. Then hubby brought an oncologist (my oncologist was away attending ASCO meetings in Chicago) to explain to me what a 'recurrence' really means...

It's been 5 years since then... (27 years since I was forced to face my first 'horror' in a foreign land where I now call home...) I've learned so much more about myself, my friends/family, the migration of the human race/our genetic links, breakthroughs in medicine, great sisterhood shared on this site, ... etc.

Life is still exciting, still 'worth the living'!

[Mtngrl]

Nora,

This is a good idea. Thank you for suggesting it.

I'm not sure I can really remember all the stages I traversed, but I do think it's good to offer newcomers "experience, strength and hope."

Your insight about being angry because of the steroids is so true! Fear of the unknown is a powerful force, and the chemical enhancement from the treatments really knocked me for a loop. I got so mean and short-tempered. Some of it was from a change of perspective, as in, "I don't have time for this." But a lot of it was definitely chemical. It gave me more empathy for people whose brain chemistry is always out of whack. It also made me realize that I shouldn't always believe everything I think. It is possible to control one's thoughts and override destructive ones.

I have learned to speak up about all my complaints and concerns. As a result I learned: that I don't have to have the "enteric contrast" (the yucky white drink) for CT scans, that if/when I'm on chemo again I can ask NOT to be given steroids, that if/when I get another thyroid biopsy I can ask for lidocaine so it won't be so uncomfortable for me (I've had three of them without it, and I HATE them) and that almost any procedure/routine can be modified if it is a problem for me.

The best advice I got was "don't worry about anything until you have to." For me, that's come down to not ever worrying much about anything. It doesn't help. It saps my energy, and, more importantly, it robs me of the joy of living. Every day, every moment, that I can be fully present and fully alive is a victory over cancer.

I already "knew," before my diagnosis, that I am mortal, that life is short and fragile. Now I accept that, and it's much less of an issue. I don't want to waste precious time. I want to finish strong, without too many regrets.

It's OK to be mad, sad, scared, but it's better not to stay there forever. Feel what you feel, accept it, then let it go. Move on.

Support, both in person and on this forum, has been incredibly important and valuable. I choose to spend my time and energy with loving people. And I'm trying to learn to be more loving, kind, empathetic, compassionate and caring. It's the best legacy I can leave.

It's helpful to have little slogans to repeat to oneself at the tough moments, like, "This too shall pass," and "How important is it?"

My favorite self-reminder is "nothing bad is happening right now." Stay in the now.

[norkdo]

Wow, Jackie and Amy. Thank you so much. I really would love us to get together some day as I have, in my bad moments in the past, gone online to this site and been rescued by things both of you have said. You two are precious blessings in my journey.

I'd love to hear from others as they reflect back on their emotional journeys from cancer.
Nora

[Mtngrl]

Nora,

I do hope we get to meet in person someday. That would be lovely.

[chekmark]

What a great idea. I went thru so many emotions, mostly scared and crying alot then angry that this happend to me, and boo hoo this happened to me. I would cry in the shower, to and from work, I was consumed with fear. I thought about cancer and what my outcome might be 24/7. I am sure I drove everyone crazy. I completely shut down for several weeks, I would not eat a thing. My poor husband was in a panic. My nerves were shot and I was just a total wreck. Everything happened so fast for me that I didn't have alot of time to put thought into things so I just assumed the worst was going to happen and now a year and a half later I feel pretty stinking good. I remember everyone here telling me that before you know it it will be all over. I cannot say it was before I knew it cuz it was indeed a journey but now it is over hopefully forever and I am here today to write this.

For all you newbies, fear, anxiety, depression is all part of the process I think. We wouldn't be normal if we didn't have any of these. Hearing those words "you have cancer" is so overwhelming. I thought this only happens to other people it isn't supposed to happen to me but it did and I made it thru a rough but tolerable year and now it seems like it almost never happened, like it did happen to someone else cuz I feel almost like my old self again but WITHOUT cancer.

Today I still think about it but not 24/7 any more. I don't cry anymore (well sometimes). I am able to talk to people about my journey and some pretty amazing things happened (like a stray cat finding my tumour) and many more amazing things without sobbing. My body is alittle different but healthier. Cancer has changed my life as I am sure it changes almost everyones but they are starting to figure it out and we just have to pray every day that they finally come up with a cure, cure, cure. God Bless everyone. Everyone on this site helped me so much.

[chekmark]

I also want to add that I was lucky and had no complications. My first chemo I had an allergic reaction and my medical team figured it out immediately and it never happened again. Glad it is over. I see my oncologist tomorrow for my follow up. Wish me luck!!

[KDR]

I've never been mad, stunned would best describe my feelings at first. It's like I drew The Card. I have, in my manuscript, described receiving the diagnosis as being The Woman Stoned in the movie classic, The Lottery. Just the unlucky woman who got an X on her paper. The One.
I took it all in, I had to. I grieved what I foolishly thought would be My Life--the one plotted in my head. An advanced diagnosis is a mindblowing experience, especially when you believe that you have done everything one should do: annual mammo, exams, etc. Now, I stay in The Today. I have a little girl I need to imprint. And I WILL.
Karen
Who Believes In The Cure

[bejuce]

You are all so amazing and inspiring!!! I feel honored to be in this group with you.

My journey started when I felt a lump under my arm in the shower in July 2008, while still breastfeeding my 3rd. He was about to turn 2 in August and I was ready to be done and get my body back. I had been pregnant or breastfeeding continuously since 2001. I nursed each child till they were 1 1/2 - 2 and stopped when I would become pregnant again.

I loved, loved breastfeeding and was determined to make it work. I still laugh about how I, an ambitious woman at the start of my career, would pump in my office while typing. With my 2nd, I noticed that my milk supply wasn't the same and I rented a hospital grade pump which I used as often as I could. I felt my breasts were powerful and never could have imagined that cancer was probably already making its ugly entrance then.

I remember commenting to my sister that I felt my right breast (the cancerous one) was different in milk supply than my left. I felt that my right breast was always feeling engorged while the left would nurse, empty out, and get full again. I also remember commenting with friends that I felt that my breasts were only getting bigger with each pregnancy and were not deflating like many of my friends'.

I went to the doctor that July to only be offered an ultrasound under the arm that showed a benign looking but swollen lymph node at 2.5 cm. I asked the ultrasound technician why she was not doing an ultrasound of the breast and she said the doctor didn't order one. They gave me a paper that said "benign finding. Come back for a mammogram when you are 40". I was 38 going on 39 then. The doctor told me the swollen lymph node "was unrelated to the breast" (!!!!) and the surgeon I saw after that (and after he consulted with the breast surgeon at the clinic) decided there was no need to do a biopsy then. They decided to follow me and see me again in 3 months after I had weaned my son. I weaned him immediately and came back in October as they told me to. I was sent to the breast cancer surgeon who examined my breasts and said "you likely have fibrocystic breasts, your breasts are still dense and engorged from breastfeeding, and showing breastfeeding changes, so let's wait to do a mammogram". How naive I was. I had no reason to distrust my doctors then. I completely believed in them...

Fast forward to 3 months later in January 2009 and my right breast was clearly bigger than the left, full of edema already. When I was diagnosed in February, the MRI showed almost my whole breast enhanced, with a 10 x 12 cm area. Yep, you read that right!

I came back from a trip to Disneyland with my family over the President's Day holiday straight into Cancerland. I received the call "you have cancer" next to my then 7 year old at the car dealership when dropping my minivan for service after our trip. I picked up the phone and the doctor said "so you do have cancer. Come in this afternoon to plan for surgery". My daughter could tell something was wrong but I couldn't cry then. I had to somehow compose myself and continue with the car service paperwork. I got a rental car at the dealership, dropped my daughter off with a friend, and headed to the clinic. On the way in the rental car, I told my daughter that I had a boo boo on my mamas and was going to have to take them out. She seemed scared and to this day was probably the child who suffered the most (my other 2 were likely too young).

You can imagine the emotions during my journey. From shock to a guttural fear of leaving my family and dying young, to even guilt. I could not accept that I, who thought I could control everything in my life, had gotten cancer. What did I do wrong? What did I do to get this? Those questions did a serious number on my head for a while. It was hard dealing with people (mostly because of how they reacted to my diagnosis and the things they would say), trying to be strong for my family, taking care of my kids, and making sure my husband was not falling apart completely. Physically I was lucky to have gone through neo-adjuvant chemo without many major side effects (the worst was severe neuropathy in my hands with my first Taxoteter). Having the bilateral mastectomy was probably my worst moment of the whole journey. It was hard losing them and altering my figure. It was hard on my family. My one-year anniversary hit me hard. I cried a lot.

I tried going back to work but wasn't offered my job back. I was merely offered a "pay for the work you bill" job with no benefits. I accepted the situation as I felt then that I was indeed doomed. I tried to work just to help my mind. Months passed and I became more empowered. I did some therapy sessions and made peace with life, its fragility, and the fact that we can't control everything. I followed the therapist's advice to teach my kids that life is not fair to prepare them for life. I decided to live my life to the fullest and not to live like I'm dying.

I interviewed with my wig on, didn't tell them I had cancer, and got a job right away at a Fortune 500 company. I started working there in November 2010 and was promoted this year. I haven't told them yet of my cancer, but I'll do so when I reach my 5-year-mark. We moved, the kids changed schools and friends, and are much happier now.

Since then, I've had a maternal aunt diagnosed with breast cancer, my father with bladder cancer, and my mom with thyroid cancer. I saw that losing my breasts was nothing compared with what my father faced losing his bladder. I decided to become more grateful for everything in life, not to complain about anything, and take life in stride. I no longer sweat the little things, and I spend more time enjoying life. I did a 100 mile bike ride with my husband and am getting ready to do a 150 mile bike ride in September. I realize how blessed I am to have my family, my wonderful children, and to have been able to breastfeed them. I know many young women who get this disease before they are even allowed to have kids and my heart feels for them.

I don't know where my journey will take me, but like the rest of you, I am no longer overcome with fear. I know that if this cancer returns, I'll face it with strength, determination, and passion for life like those before us. CourtneyL was my inspiration on how to live with metastatic cancer. I no longer feel guilty of having done something to have caused my cancer but still feel judged by people from time to time. I'm trying to lose the extra weight gained with treatment, but I no longer get too preoccupied with it. I feel lucky and blessed to be alive. I don't care if I won't ever wear a bikini again. I care about being with my family and teaching my kids about life. My goal is to live to be a grandma.

Sorry if this is too long, but your stories above inspired me to type and type...

Thanks for starting this thread!

Marcia