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Transition to Survivor

Jessica_Hall01
Posts: 2
Joined: Oct 2011

Hi All,

My name is Jessica and I was diagnosed with NHL in my tibia in Jan. 2011. My type was rapid growing and I almost faced an amputation as the cancer ate completely through my bone. I went from training for a half marathon into a wheelchair/crutches. I started chemo right away and completed 8 cycles of R-CHOP. I then moved on to 5 weeks of radiation. I am still receiving Rituxin therapy once a month for a year.
I found that throughout my treatment I had something to work towards. Now that its all over my time is spent reflecting on what the heck happened this year. I've had to go on disability for work as I am an ER Nurse and come into contact with many different hazardous bugs.
I am finding myself very emotional lately and sometimes don't even know why I'm crying. I find that I make myself a ridiculous amount of errands to do because it makes me feel productive. I wish I could go back to work and feel like I'm contributing to life again but wouldn't be able to complete the harsh 12 hour shifts. I've barely gotten the okay to exercise again and have been trying to work up some stamina but find myself tired throughout the day.
Any thoughts on how to deal with all these emotions? How did you survivors deal with this transition phase?
Thanks!
Jessica

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi Jessica and welcome,
I'm really sorry about all the things that you have been going through, I haven't really experienced anything yet, I'm on the watch and wait scenario. I also have NHL mine is the Follicular slow growing type, I'm at a stage IV but my Dr wants to watch and wait since I do have other health issues. I wish I could provide some words of wisdom but I'll I can provide is a friend that will listen when ever you need somebody to talk to (or cry)! I feel that just talking about it will help you process all the emotions that you went through this year. I'm certain that you will find it here, because I have also found it, I have found the emotional support and not to mention there's are a lot of smart people on this site that can help you.

Sincerely,
Liz

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Hi Jessica!
First of all, you are beating this so Hooray for you! The hard thing now is to slow down and let your body heal and bounce back gradually. You have been through a war! The emotional difficulty could be that you are coming to terms with what you have survived, you are exhausted and are letting your walls down? I can’t imagine being a nurse in an ER, thank God for all of you who have the fortitude to do that! I’m Ok when an emergency is going on, but as soon as it’s over I’m in a heap in the corner lol. Maybe that’s what you’re experiencing now. You ARE contributing to life and being productive by getting yourself strong and well so you can continue your selfless work. It all takes time so be patient with yourself and take care of you like you would do for others.
Best to you!
Cat

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Congratulations on survivorship!

First of all, you have to get the happy dance:

http://www.youtube.com/watch?v=ttpP51giSQI

Regarding the "transition", I'm in a similar situation as I just finished
my 6 cycles of R-EPOCH. I had surgery after cycle (1) and all the treatments
required me to be in the hospital for 5 days so work was out of the question
for me also. I had to go on long term disability from work and SSD also since
the LTD company requires you file (it saves them money once you are approved).
So, I'm kind of there with you but probably just maybe a month or so earlier.
I found myself very emotionally confused the other night and I wanted to cry
but I wasn't sure why. I was still coming down off the prednisone and chalked
it off to that but maybe it wasn't the total culprit.

You've been through a very big ordeal. Probably part of you is just now
processing some of what happened before and the emotional turmoil is a part of that.
It's very normal. I know you probably feel a little bit lost right now. I know I do.
Also, I think now that we're out of the immediate threat from cancer, we are
mourning losses: I don't have the job I had, I don't have the income I had,
I don't have the pride of my work and social interactions, I don't have,
I don't have... We're experiencing loss and are grieving which is another
process also.

Some suggestions that might help with some of the day-to-day
(as you are able or willing):

1. Add structure into your life by organizing and planning (as you are able)
things to do. Being on more of a schedule of sorts is more familiar and
maybe will help with the transition.

2. Do some kind of volunteer work that doesn't pose a threat to your physical or mental health. We can always use good people here and your nursing background ought to
be useful.

3. Do some of those things around the house you've put off to help you feel
productive.

4. Take some online classes.

5. You might want to consider counseling if you feel it's out of hand
and you are not making progress with processing things.

I'm trying to make this an opportunity for me to re-evaluate my life, "take out the
trash and clean house" so to speak. The current situation is giving me time to do that.

I'm not sure if any of this helps you because I'm in the same "puddle" as you right now.
Just know you are not alone and I'm sure some others will chime in here with some good
advice (for us both).

You will get through this.

Big hugs,

Jim

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Jessica,
I'm 9 months out from my last CVP-R chemo treatments and currently doing my 2 year maint Rituxan.I was diagnosed in June 2010 with Follicular NHL-stage3-typeA-grade2. Mine is a slow growing indolent cancer and non agressive. My treatments worked and right now I am considered stable. For me, I just take it one day at a time and try not to get too far ahead in my thinking. I try hard to keep stress minimal and my days as peaceful as possible. I still have my moments where I future trip and get a little anxious, but I think we will all do that from time to time from just knowing we have cancer with the possibility of it coming back. I do not work..(retired 10 years ago),and for that I am grateful. I spend 3 days a week babysitting my new grand baby Lizzy,and it's been the best medicine any doctor could prescribe. Try to find a way to chanel your negative emotions into positive actions. Do things that make you happy and spend time with friends and family that make you happy. You will find a way to transition into your new normal, but give it time and be patient with yourself. When you are feeling helpless and sad please come here and ask for help. This group was a life saver for me over the past year. I'll keep good thoughts and prayers for you...all will be fine in time...trust me. Much love...Sue (FNHL-2-3A-6/10)

jnyb2020
Posts: 10
Joined: Oct 2011

I am so sorry you have been put into this position! I had NHL, stage 3, and according to the doctors, including the Dean of Oncology, at one of the south's leading Medical Colleges, am "cured"! Also, I have evaded the possible side effect of the chemo. I had my treatment in 1983-1984.
I was in very poor physical condition when I started chemo after sugery. I was a little over 100 lbs. (due to poor advice from the civilian GP.) so I was at a disadvantage to get into the battle, physically,
I was extremely weak from the effects of the chemo, and also, trying to get muscles back to some sort of condition. ( I was an active duty Marine before my new life!)
This being said, I had a long road to get back to near what I was previously. Mentally and physically. It took me a good year to work myself up to about 80%.
My point being, I agree with some of the other's ideas. You have been through an unparalleled fight! And as such, please be patient...listen to your body, don't try to get back to "fighting condition" so soon, it will take time.
I don't think a "survivor" ever gets really over your ordeal! It has been a long time since I was in your shoes, although a few weeks back, I was misdiagnosed with Lymphoma after a CT scan and bladder surgery. (this is how I found this site!)
I don't remember all the details of the timeframe from sick to "recovery" but it seems to dull over time, and there are moments where you actually forget!! Really! To me, it was a bad dream. I lost my profession, income, temporarily, but found myself being as active as my parts would allow. I finished my degree, started a rather successful business, was able to actually improve my and my family's life and lifestyle to better than pre-CA era.
But it did take time, and there were some speed bumps along the way, but you are only limited by your imagination and drive! I have to admit, I have never run a marathon, but what I have read from you, you can do whatever you put your mind too! But you have to take it, again, one step, at a time! It will happen!
Also, thank you for being a Nurse! I loved all my nurses, well, almost!, But in my experience, THEY are the caregivers! My Mother was a Nurse for 30 years, so was each of my 4 sisters. One is now a Lieutenant on the Fire Department. (She went through the academy during her 50th birthday, and stands about 5'2"!)
So, take your time, go to the beach, have a (few) pina-coladas, and take a break for a while! You deserve it!
God bless you, and my thoughts and prayers are with you!
Semper Fi,
John

Neon911
Posts: 1
Joined: Oct 2011

Hi Jessica,

I was diagnosed in September 2007 with Stage IV NHL, and was on a 2year treatment of Rituxin. I was a home heath nurse at the time, and visiting my patients became challenging once the chemotherapy kicked in. I remember one day in particular, I had to call my boss from a public bathroom in one of the buildings I was working in because I suddenly found myself without an ounce of energy left in my body. It was scary. I too would cry at the drop of a hat. I had to learn to overcome this because depression can weaken your immune system. I, just like you, would fill my days with so much to do that I would feel exhausted, just to make myself feel that nothing had changed (I've always been a little hyper). But things had changed, and once I accepted this, I began to move forward. Things still continue to change but hopefully for the better. I am no longer a home health nurse (a job I really enjoyed), I now work in a hospital. I've tried to change my eating habits (certain foods can make you feel depressed especially fast foods), and I'm trying to exercise (not easy to do after being up all night working). I've also gone back to school to further my career. I am getting a CT Scan next month, and I can't deny it makes me feel anxious. Even though I'm in remission according to my doctors, I still worry, sometimes. Once I was done with my treatments I tried to spend more time with family, pets and friends, because that's what life's about (not the chemo). The bottom line is, no one is going to be able to help you to move on unless you're ready. Cry if you need to but if you find that it's more than once a day it's time to change your thoughts, and find a happy place. This too shall pass. Good luck!

Neon911

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