The old me is gone. Hello new me.

Posted By
Ridingaroundwit...
11/5/2017 11:34am
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Replies: 15

Hi All,

I'm currently in a holding pattern.  On nivo maintenance.  Hoping my brain tumor doesn't return and waiting for the last two tumors to shrink to non-existence.  While I'm waiting for the latest brain MRI which was on a Saturday (terribly stupid of me cause the earliest I can get the results is now Wednesday) and the next CT scan of my abdomen I've come to a realization.  

I had been waiting to return to myself.  I was waiting to return to running, to return to being fit and looking nice and putting in 100% for the others around me.  Well, that just isn't happening.  My foot is still numb - I have four months before I'm a year out from the craniotomy so I'm told to be patient however I'm starting to think the new me just has a numb right foot.  I'm still not exercising.  I just can't motivate to do it.  I'm still focused more on myself than I am on others.  Not to mention my hair.  I'm happy it's growning back post radiation however the two different lengths is quite a challenge.  Think the worst mullet you have ever seen and times that by 10.  A couple of days I wore a winter hat just because I couldn't get it to stop sticking up in the middle and I was late for work.  In all fairness I live in New England and so a winter hat in October/November isn't that ridiculous except that it happened to be 74F and 70F the days I was wearing the hat.  That's NE weather for you.

In short.  This is the new me.  A bit selfish.  A little shallow.  Stuck in a holding pattern.  Tired all the time with weird hair.  Completely unfit with fat roles.  Wanting the NED diagnosis to be the next thing I hear.  Knowing it is most likely years away.  The DRs keep telling me it depends on the next MRI.  It depends on the next CT Scan.  They want to keep me on nivo for another two years.  I've started back at work full time and I've started driving again.  One of the toughest parts is juggling the schedule.  I'm having a terrible time fitting in the infusion appointments with work.

Thanks for listening to my rant.  Thanks for understanding.  No one else really gets it.  So thank you all.  Your support helps me keep going, keeps me positive and makes the waiting bearable.  Anyone else adjusting to the new normal?  Tips appreciated.

Thanks,

Jennifer

 

Anonymous - (11/5/2017 - 1:42pm)

Hi Jennifer... I haven’t had nearly the experience you have but I can relate to a certain extent.  Today I was at the gym and I was barely able to run 3 miles when three years ago today I ran the New York marathon.   My friends are all planning winter outings to go to sunny places and go boating and the last thing that I want to do is sit in the sun.    

On the flipside… I was insanely grateful this AM to be able to run 3 miles.   One year ago I wasn’t running at all.    I am trying to appreciate even the smallest amounts of progress otherwise I will get frustrated.    

I wish you the best and a speedy and healthy recovery.    

PS  - I’m in California and we see all sorts of crazy hair cuts out here. I bet you look great!

Awesome that you are running 3 miles!  I did one sit up yesterday.  : )  Maybe I'll start running again or at least be able to do 2 sit ups.  I hear you on the frustration.  I think I'm coming to terms with this and it throws me for another loop.  Keep up the good thoughts, good recovery and enjoy the California weather.  

Hi Jennifer, My son is dealing with melanoma, I’m just the mom. I see how hard it is, though, to be juggling a full time job with radiation, nivo, surgeries, pt, lymph pt, onc, derm and eye dr appointments- and, oh, allllll the scans and tests. Much admiration for just keeping on going!! Rant all you want!!! Hugs!

Thank you so much!  There is no such thing as "just the mom".  You are the rock behind your son.  You feel for him like no one else can.  You worry for him like no one else.  So the plan is just to keep on going because I'm also "the mom".  My girls don't see it now but maybe someday they will look back and understand why I stopped making sure they had the purple shirt for purple shirt day and why I wasn't at every softball game.  Keep being the rock star Mom that you are.  Your son might not say how much you mean to him but you know he thinks it.

I think that the new you has a great sense of humor and when your tumors shrink, new you and old you will meld into super Jennifer 2.0

ps reading your post puts my situation into much better perspective, so don't feel weird about ranting-you made me feel lucky this morning when many mornings I've felt like if I didn't have bad luck, I'd have no luck at all

JulieT

Thanks so much. I wish you good things and lots of good luck.  I like to think I have a good sense of humor but I have it on good authority that I am "no good at funny".  I think it's just the audience.  6 year olds are tough!

Hi Jen, well, im a newbie compared to alotta folks here & throughout the world, im still a week or two out before my 1st Pembro infusion, i havnt any tips or tricks of the trade other then 6 prior surgeries in my fight against our mutual enemy. You are an Angel Jennifer! You are ALIVE! I can only hope my treatment keeps me alive for as long as it has for you, be strong! Thats my tip, hair & hot bodies are around the corner girl, dont even trip on that ;)...Mike

Hi Jennifer - you are absolutely right about accepting your "new normal" life.  So many of the things you mentioned are similar to what my husband - and our family - have had to adjust to during his 5+ year battle.  I try not to think about what we would be doing and where we would be if he hadn't been diagnosed with melanoma.  Instead, I give thanks every day that he is still here with us...he is not able to do much of what he did before, we don't travel nearly as much, our future retirement plans are much foggier but he's still here!  You've earned the right to be selfish and shallow :) .....we call it "playing the cancer card" when my husband just needs to focus on himself.  Take life one day at a time and continue to focus on getting adjusted to your new normal.  Take care - I'm hopeful you will have wonderful scn news this week!

Ann

Hi Ann.  Thanks so much for your kind words.  I hope your husband is doing well and wish you both many good days ahead.  Wednesday can't come soon enough.  No more Saturday MRIs.  I also call it the "cancer card" but I'm not quite using it that way.  Perhaps I'm still a rookie.

Hi Jennifer,

I can truly understand your lament as I have been there- am there- myself.  I too was a runner befor Mel and surgery (CLND left neck) which led to nerve damage, stiff neck and shoulder dusfunction.  I never thought about how the shoulders are involved in running until this and after many tries I have accepted that maybe I need to look in another direction for fitness.  In addition I have aged faster in the past two years since diagnosis but I am at that age where it all accellerates anyway;)   

I have had colitis, uveitis and thyroiditis from the immunotherapy.  Yet, after spending last year watching MEL spread, I am currently NED.   SO I will take this new me and be grateful that there is a me at all.  

It is hard to look back and see pics of that care free (comparatively) younger healthier self, but life gives all of us challenges and losses.  It is good that you are sharing and helping other people to share too.

Thanks and here is to NED for you in the near future too!!

Peggy

So glad to hear you are NED.  Sorry to hear about your immunotherapy side effects.  They are tough when they hit.  It's so helpful to read and learn about the journey from someone else.  We are all unique and go through so much but this takes it's toll.  Knowing we all have this shared experience gives so much comfort and hope.  Congrats to the new you!  

Thak you to everyone for your responses.  It really lifts me up and I appreciate your insights.  I come from a large family but we aren't close.  Thank you for being my melanoma family.  I hope you all have a nice end ot 2017 and a brighter 2018.

Why not vent with us?  I'm tired of being of prednisone, i am finally on 40mg.  Been on it since Aug 10th,  my friends go to the gym, I'm too tired.  I think the 100mg of thyroid makes me feel weird???  I call it loopy.  When i was being weaned to 1/2 mg of prednisone my liver panel went way up, so back to 100mg for two weeks, then 80, then 60 and i am on my first week of 40.  Can't wait to finally be slowing weaned off of it.  I googled liver disease diet since i now have hepatitis D, so i now am off sodium and researching recipes.  I catch myself say i'm tired of being tired, then I say I'm alive!! 

Why not vent with us?  I'm tired of being of prednisone, i am finally on 40mg.  Been on it since Aug 10th,  my friends go to the gym, I'm too tired.  I think the 100mg of thyroid makes me feel weird???  I call it loopy.  When i was being weaned to 1/2 mg of prednisone my liver panel went way up, so back to 100mg for two weeks, then 80, then 60 and i am on my first week of 40.  Can't wait to finally be slowing weaned off of it.  I googled liver disease diet since i now have hepatitis D, so i now am off sodium and researching recipes.  I catch myself say i'm tired of being tired, then I say I'm alive!! 

I remember that day - I realized I was not going to 'get better', that feeling a little crappy was going to be a permanent thing. I sat around for too long, then slowly i began to accomplish little things. Before long my 82-year-old landlord/friend comes over, asks if I'm busy, and we go cut down a tree or clear out the creek bed or something. After all, he's too feeble to be out there by himself...