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Venting for a bit, then a question about work / career post diagnosis…

Forums General Melanoma Community Venting for a bit, then a question about work / career post diagnosis…

  • Post
    AZSoCal
    Participant

      [First off, thanks to everyone on this board. This community has been a HUGE help in my journey. I'm fortunate to have many great friends and a very supportive family, but it's always nice to interact with others who know the emotions we are all experiencing first hand.]

      I was diagnosed with Stage IIIc Melanoma back in May (41 year old male). I've had the SLNB and the WLE, as well as the full lymph node disection (under my left arm).  

      I'm sure the surgeries will turn out to be some of the easier parts of this journey, but they are taking a bit of a toll on my psyche at this point. It's not the pain as much as the constant reminder of this disease. It's impossible to forget about cancer when you have a drain bag tied to your leg, and a 4-inch scar on my chest that I get to stare at every morning.

      I did finally get my drain out last Friday after 31 days. I thought I'd start to move beyond this part, but I was still draining quite a bit when they took it out (60-70cc / day), which has resulted in continuous oozing from the drain site. I'm now back to changing the bandages every 3-hours again.

      These things are all so minor in the grand scheme of things, but it adds up over the course of the treatments with the cumulative stress it causes. With immunotherapy around the corner, and more potential side effects looming, I'm finding it very difficult to focus at work.

      I took 3-weeks off work after the last surgery, which helped clear my head a bit. I would take more time off now, but I feel like I should save this time for when I might really need it. 

      I think the bigger issue for me now is how this whole situation has changed my life. I am one of those people who define their individual success, by their success at work. It makes me feel very fulfilled and personally happy when I'm succeeding at my job and doing things most people would not do to get ahead (i.e. working 70-80 hour weeks for 10+ years).

      I thought coming back to work would help, and to some extent it has, but I also partially blame work for my cancer. I imagine the stress I've been subjecting myself to (or allowed myself to feel) over my ~18 year career has in some part killed my immune system enough to assist this cancer in taking hold. I'm very reticent to throw myself back into the mix at work with immunotherapy just around the corner. 

      No real questions here. I guess I'm just curious to know…

      …if anyone else had a similar reaction? Does it get better? Did you move on from work? Or did you eventually refocus? How'd your career change during / after this process?

      Thanks everyone, and stay strong! ๐Ÿ™‚

       

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        Kim K
        Participant

          Yes, that limbo feeling is real and common.  For me, I busted my A$$ to become a veterinarian and love what I do.  I am also the single mom of 2 girls who were 2 and 4 at the time, and was living at home to take care of my mom as well.

          I became stage IV in 2009.  I underwent IL-2 if anything to fail it so I could qualify for a clinical trial.  It shocked the heck out of me that I became NED and continue to be NED.

          I was torn between creating memories for my two young girls or going back to work.  Back in 2010 even with the Braf drugs availible, I still had a 50-50 chance of living to X-mas of that same year.  I felt fine, underwent VATS for my lung tumor and the one remaining tumor melted away.  It was at least 5 years when I went from IIA to IV without going through stage III.  I loved my job and it was a large part of who I am and what makes me feel like I make a difference in this world, I also didn't want to throw away my education.  Heck what if I made it into the 3% club?  I felt guilty as hell either way.

          I decided to go back to work after surgery and took off 3 weeks for my IL-2.  I am glad I did, but I am very glad I did go back to work.  I lived!  I went from saving to give my girls as much as I could before I passed, to now needed to go back to worrying about how was I going to pay for braces, college, AND my retirement on my salary living in the most expensive state.  In the end I went with what my passion was and wasn't going to let my cancer dictate my decision.

          Go back to work, but instead of 70-80 hours, stop and smell the roses along the way.  Perhaps do a "normal" 40-60 hours instead and focus on having a good balance in your life whatever that may be.  The day you die, not many people would say "Damn, I still have more work to do", but rather, "I wish I had more time to enjoy travel, relationships with family & friends, and to live deliberately".

            AZSoCal
            Participant

              Thanks for your note, Kim.

              I can only imagine how stressful this might be with two young girls at home, and as a single mom. Hearing stories like yours helps give me strength that there is some version of "normal" ahead.

              Sound advice as well. I have just personally found it hard to pull back and admit that I cannot keep doing things the same way I had done them before… at least not right now.

              I guess I just need to get comfortable admitting that fact and not looking at that mindset as a failure, just an evolution… and maybe a new opportunity.  ๐Ÿ™‚

            I feel like I'm right there with you.  It's all the little horrors that add up and seem to stop life as you know it.  When I took my first medical leave I stayed in touch with all my projects and checked emails every two or three days.  Getting back to work felt extremely important to me.  Work battles with kids as top priority.  When I went out on my second medical leave I completely detached from it.  I was out twelve weeks and didn't check my email once.  My boss actually sent a few notes to my husband to check in and make sure I was still alive and planning to come back.  I've been back to work about two weeks and I just don't love it the way I did before my second leave.  It just isn't as important as it was.  It no longer defines me – now it is just something I do when I'm not sidelined with this disease.

            I've dealt with many things over the past year that I'd never even thought about.  I was a fairly healthy person.  I watched my diet.  I don't smoke.  I drink only a little.  I ran half marathons.  I barely took advil.  I was almost never sick.

            Now I'm on three "forever meds".  I am so sick of getting IV's and blood draws.  I've been hospitalized three times.  I've had more MRIs and CT scans than I can count.  I've had two ambulance rides.  I have three doctors with "neuro" in part of their title.  Oh and the best part is that I'm still dealing with effects of the crainiotomy and brain radiation so can't really run and can't drive.  Nothing like being trapped in the house when the weather is finally nice.  I'm also really fatigued still so dragging myself out of bed to work from home is tough.  Although they are letting me work from home I'm not sure I'll be able to go back to the office full time as soon as they expect me to.  It's a fine line with HR.  They don't like us working from home during business hours. 

            I'm struggling to admit my limitations and find that they get thrown in my face even though I don't want to deal with them.

            I wish you the best.  Thank you for venting.  It's nice to hear someone else's story and relate to it.  Although we know we aren't alone sometimes this feels very isolating.  This board really helps.  

            Jennifer

              AZSoCal
              Participant

                Thanks Jennifer,

                I read your story last week. It's partially what motivated me to make this post. As much as people need specific advice on this board, I find sometimes they just need to vent as well… and it's hard to vent to your family all the time knowing you're putting some of that burden on them. 

                I would kill to get back in the gym again and wake up the next morning sore from a kick ass workout. It's not that far off, hopefully, and I plan to use this energy as renewed motivation once I can.

                That's the silver lining I suppose. It just sucks to know something could be lurking around the corner that will make you hit the reset button and go through this all over again.  

                I wish you the best as well! ๐Ÿ™‚

                momof4boys
                Participant
                  What has worked for me for the last 4 years is dont let your mind wander to much. One day at a time and before you know it, you’ll be back to living life. It may be a little different life but it wont consume you anymore. I guess for me getting past the first year and all the scans, treatments and visits thats when I started feeling back to myself. I developed lymphedema in my leg so that changed some things but im living life. I think it just takes some time to get your new normal.
                J.bun
                Participant

                  Work is certainly different for everyone … as much as I don't like to admit it, it has been a strong source of my identity.  The first question I asked my doctors after my advanced diagnosis in Nov. was – how will / will this affect my ability work?  I had a rough physical ride from Jan – March  – and even though I would have qualified to go on disability leave, I did not want to.  This is not a lesson in heroics, but a personal choice – and I was fortunately able to have upfront conversations with my managers to have more flexibility (e.g., ability to work from home, not necessarily able to take on as many new tasks, keep things more of "status quo").

                  Personally, I wanted to remain working as a "distraction" on the day-to-day and uncertainty of treatment. Even today, I spend less time thinking about melanoma and my treatment when I am at work.  And at the same time, I sometimes feel a bit inadequate at work – even though that is far from reality.

                  Now that I am doing much better, I am starting to question how much to re-engage at prior levels.  But I will tell you this, things at work that used to phase me more just "don't" – and I would always rather be spending time with friends and family than doing work in the evenings and weekends.

                    JaiLee
                    Participant

                      Work changed for me too. I had to take quite a bit of time off after my surgeries (last one was in March) and have been slowly getting back to things since. I was in an ipi / pembro trial, but have only had one infusion of ipi, and am having some nerve issues, so we are going to stop. I haven't been able to ride horses since Jan., which makes me very sad because it is something I truly love to do, but I still get to spend time with them. I ended up having a lot of lymphadema which is frustrating. I guess one thing that has helped me is focusing on little things at a time. Something that takes my mind off how Im feeling and the 'what ifs'. I can do a lot of my work from home fortunately, but my travel has been limited. So I have started to put things in place that will allow me to do more closer, rather than having to travel. This will also let me spend more time with family and friends. One of the most frustrating things is my inability to do quite as much physically as I once did. It seems like everytime I make progress, something sets me back. It is all very depressing sometimes.

                      I too seem less "bothered" by things. There are so many other important things in life, that the small stuff is seeming even more trivial. I just want to get past all the Dr.s and poking and tests and get on with as normal a life as I can.

                      Hang in there. This is a wonderful place for info, and updates, and venting too.

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