Slowly adjusting to everyday life.

[uscjpa]

First, let me say this community has a very special place in my heart. Although this is my first post, I've spent countless hours exploring the site. You've all been a tremendous source of strength and comfort for me. Funny thing about the internet. I've never communicated with anyone here, and yet so many of you have done more for me than you'll ever know.

Anyway, here's my story. I apologize in advance for being long-winded.

I was initially diagnosed with testicular cancer June '07. Post orchiectomy, there were no signs that the cancer had spread and I opted for the standard surveillance protocol. That December, a CT revealed an enlarged abdominal lymph node. The subsequent PET confirmed it was cancer - days before my last set of law school finals. It was especially crummy timing.

Once the diagnosis was confirmed, I banked some sperm - a truly bizarre experience - and got started with 3 rounds of BEP ASAP. As all of you know, it sucked. I finished up the treatment late Feb/early March and received a clean bill of health shortly thereafter. About 3 months after receiving the "all clear," I had another PET scan which happily confirmed that the cancer was nowhere to be found. That was one month ago.

In the midst of this madness, I've finally graduated law school and am now preparing to take the NY Bar exam at the end of this month. Since the diagnosis, my life has been moving at breakneck speeds for what seems like an eternity and it's definitely starting to wear on me. I don't know that I've given myself an opportunity to digest everything that's happened. Then again, I'm not sure that all the time in the world would let me wrap my mind around the last few months.

What I do know is that both the physical and emotional side effects have been more than I expected. I still have plenty of aches and pains. My memory hasn't yet recovered. I also still get numbness in my extremities and ringing in my ears. The loss of muscle has made rehabbing my bum shoulder next to impossible.

Emotionally, I occasionally find myself worrying about all the "what ifs." It's amazing just how self-destructive that behavior can be. I've also found that I'm much more sensitive -- I'll tear up at things that never would have affected me so deeply in the past. For example, I literally began to weep when I saw that 2 people were viewing the "just diagnosed" forum. I wondered about who those 2 people were and how their lives were forever changed.

Some days it all just gets to me. Everyday life can be exhausting. I suppose a big part the transition from patient to survivor (besides staying healthy!) is moving beyond the days where the negatives really get on top of you.

That said, it's obviously not all doom and gloom. I'm alive! And I must say that in spite of this bump in the road, life has been pretty damn good to me. I don't know what the future holds, but here's hoping that my health holds up and that crummy days like this get fewer and further apart.

Much love. My thoughts and prayers are with all of you.

[Smartie]

Hiya uscjpa.

Wow. Everything you said rings so true with me. It's nearly seven years since I was diagnosed, but I still think about cancer every day. Maybe I should give myself a day off!

Certainly the emotional effects of cancer and survivorship have taken me by surprise. It's very easy to allow the emotional effects of having had cancer, and the fear of it returning to take over your life. At times it has taken my life over.

In a way, I'm not sure what advice to give. On one hand I want to say "keep yourself busy and don't let yourself dwell on things", on the other I want to say "you've been through a great deal - give yourself time to reflect and come to terms with things".

Personally, I spent about a year after I'd finished treatment just continuing as before - same job, etc. Then, after a while, I looked at things and decided to change some of it. That's when I went to university to get my degree and my master's. Of course, your situation is different; you've finished your studies (well done!), but I'm betting that in time you'll reflect on things and, whilst some parts of your life will stay the same, you'll also end up doing things with other parts of your life that you wouldn't have done before cancer.

Good luck with everything, uscjpa. Loads of us here have made or are making the same adjustments as you - indeed, I'd venture to suggest that for many of us the very fact that we are here reflects a part of that adjustment.

The best thing to do is what you are doing now - keep talking.

[NYC Russ]

While time does heal some "worry", sometimes time alone not enough. Everyone has a different way of coping with this and for some people, it seems a constant fear of the future becomes "normal". Of course, that's what they make psychiatrists for If that's not your cup of tea, there are a number of books which you might find helpful. i.e. "Helping Cancer Patients Cope" (Nezu, Nezu, Friedman, Faddis and Houts) is written for psychologists (I was a psych minor in college so this might not be for everyone); "The Human Side of Cancer: Living With Hope, Coping with Uncertainty" (Holland) is written by the chief of psychiatry at Sloan Kettering and is a lot less technical. And of course, there are dozens of others.

But given some of the details of your story, I have to wonder if you've had your testosterone levels checked after the orchiectomy? Some of the effects you mention could be related to a hormone imbalance - you might not be crazy after all (Well, at least not for that - you're still crazy for taking the Bar Exam).


Best wishes.

[Scott]

Welcome, uscjpa, and thank you for that most excellent first post!

The ways that we react to and change from being affected by cancer are often surprising. While we can't ignore all the shadows, it helps to turn into the light. Good things are waiting for you there.

[Aegletes]

I identify so much with everything you said, uscjpa, even though my own cancer experience has been different. Discovering what "normal" means post-treatment and learning to live life again is a challenge every single one of us faces and navigates. In particular, you mention the days when the negativity predominates. Wow, do I hear you loud and clear. What helps me is to focus on other people and doing good for others so as not to think too much about myself.

[Margaret]

Welcome...and first let me start by saying I am sorry about the terrible ordeal you have been through. As a caregiver, even though I have been through my own scary journey, I am sure it does not compare to actually having this monster in your body. But I have said before and I continue to find it rings more true with me every day that passes, but it seems that the healing of the mind and heart is at times as taxing as healing the body. The worry and anxiety that cancer leaves behind as its lovely parting gift seems very unfair. Many people in our lives have said that since we got our "all clear" we can finally put this behind us...but me..it was only the beginning of a life-long battle.

When the treatments were over, I was surprised that I did not feel instantly better about everything. The comfort I had been dreaming about did not come the next day, the thoughts of anger/guilt/sadness/worry did not suddenly leave me, and the pressure to be on our own (with out the constant care of the doctor watching over us daily) scared the crap out of me. What if we miss something? What if my careful eye is not enough to protect him?

This forum and the people in it, have helped heal me. Stay here if you can and maybe we can help and I promise in the process...you and your story will help others.

love.

[CharlieFL]

That said, it's obviously not all doom and gloom. I'm alive! And I must say that in spite of this bump in the road, life has been pretty damn good to me.

And this line above is exactly THE ONLY thing you need to focus on from here onward! You can choose to ride the paths in front of you barefoot or in a Sherman Tank - but the road leads only one way and that is FORWARD. If you hit another "bump" on the road, choose to run right over it and lean on us here when you need to. We have gone through this road at different speeds, but it has affected us all. Good luck and welcome home!

[Jay68442]

Welcome uscjpa,
It’s great to hear that you have gotten the All Clear and are continuing to recover both physically and emotionally. I know you have heard these words before but I will say them anyway.”Time heals all wounds” This is a truth. How long it takes depends on the individual. For me I put cancer aside rather quickly. My desire to live and continue living made my thoughts of cancer disappear. My desire for a "normal" life reinforced the idea of leaving it all behind. One of the things that really helped me through was conditioning myself to look for positive things everywhere I went. Even it was to just walk outside and smell the air or notice the color of the sky. I say condition because it took some work to learn to focus on such things. In our fast paced lives learning to slow down and take notice can be hard but very beneficial. I no longer have to look; I can see the beauty in everything without effort.

Jason

[uscjpa]

I hope I wasn't painting too dark of a picture! It was a rough day and it's hard to give a full account of oneself in a single post.

I don't mean to suggest that everyday life is a daily struggle, but rather that cancer has touched - and continues to touch - my life in ways that I simply didn't expect. Sometimes, it's all just a bit much.

I think Scott put it perfectly when he said that:

While we can't ignore all the shadows, it helps to turn into the light.

The shadows will always be there. There are no two ways about it: having cancer is a traumatic experience -- for both patients and their caregivers. The key, I think, is placing that trauma within the appropriate context. Keeping your face turned toward the sun and focusing on the wonderful things, both large and small, that life has to offer us.

But even with a fairly sunny disposition, the shadows do occasionally hold sway.

For me, my recent difficulties are because a dear friend of mine is battling a breast cancer relapse. I'm very much afraid for her and I think about her every day. At times, I can't help but allow my fear and concern for her to turn inward. I suppose it's a small taste of what our caregivers have had to deal with.

Anyway, thanks so much for the thoughtful the replies.

[MRMRSU]

Hi there uscjpa. I think what you wrote resonates with every man here diagnosed with cancer. The heightened sensitivity and the acuity with which you now view everything around you is very difficult to comprehend, isn't it? I've noticed in my husband a softness, a more sentimental side that used to be a bit harder to coax out prior to his diagnosis. Thank you for sharing your story...I didn't find it to be a doom-and-gloom at all. Rather, it was your affirmation. Despite everything you went through with treatments, you did it...you lived life...you accomplished what you wanted. You let life happen, despite cancer. Congratulations on graduating from law school!