Life after the five year mark; what now?

When I received the good news at the Cancer Clinic last month, straight from my Hematologist Oncologist, I did something that probably not many people do at their five-year survival mark clinic visit.  Battling a rare disease for those five years, one that not many in the medical field are familiar with, will do that to you.

Good thing I am feral.  Pfft.

So what I did was tell  Mr. Foresterman "wait. I'll be right back", and I left him at the elevator.  I walked back into the clinic, past the main desk before they could say anything, down the windowed hallway, taking that familiar right and then went straight back into the office section of the clinic. All without the usual weight measuring tour guide, Ms clipboard lady.   

Too bad.  I am feral.

He was there, sitting and talking on the phone, in front of a large screen. He looked up and acknowledged me silently with his eyebrows.  His expression was one of perplexment, and he told whomever on the phone quietly  "thank you, will talk later."

I had his attention now.

"Are you sure?"  were my first words as he hung up the phone.  I was impatient after all, and no longer his patient from the results of our visit not just five minutes before.

Oh, and I am feral too.

He gave me a look that I couldn't read (he is a cancer doctor after all and I'm pretty sure they learn that look in medical school), then broke into a smile.

"Yes. Janice, your results came back fine. You are all done."

I stared back, waiting. For what?

I didn't know. I'm feral.

But he knew. It was then he touched my arm, and added an emphatic "really".  

Which I'm pretty sure isn't in his usual doctor vocabulary. But he knew what I was about; after all, we just ended a five-year relationship.

And so with that one word, “really”, it began to sink in.

I was done. 

No more what-if's, no more questioning any innocent symptoms, no more scans with IV's that don't go in right, no more storing my own stash of barium that reminded me each time when I opened the pantry door that “I AM DAMAGED”,  no more starving blood-work tests too late in the morning, no more naked medical poking and prodding while wondering if the third floor window can be seen in, no more making appointments that made you wonder for weeks before if they would find something this time, no more asking questions of what-ifs of a rare disease that it still being figured out that  "NO ONE KNOWS" is always the answer.  

No more Unicentric Castleman's disease, which kills one out of twenty people the first five years.

No more. I was done.

He stood up, held out his hand, still smiling. It was my social cue to shake it, say goodbye, and to leave.

Really?

Really.



~

I am here to tell others that it takes approximately three weeks to a month before a feral person realizes that they are cured. The best word to describe how I felt during this time was “confused”.

I should have been elated, happy.  My family and friends were overjoyed, congratulating me, hugs all around. I smiled, high-fived back, acted happy but…

I was confused. 

And to make it worse, I was horrified at my feelings.  THIS WAS NOT A SOCIETAL NORM! Why was I feeling this way? I wanted to feel what OTHERS wanted me to feel, what other five- year survivors shared online, in person; so why wasn’t  I happy, giddy, because after all, I was relieved I wasn't going to die from Castleman's.  

IMGOINGTOLIVE- YAY!!?   

What the hell was wrong with me?

So I felt this mental pressure like I have never felt before. I wondered if I should see someone, which I advocate most wholeheartedly anyways.  But then of course I did what everyone says NOT to do; I researched online.

But hey, I already just beat a rare disease that makes you become your own best advocate by researching so…

The closest situational response I found was PTSD. Having experienced a bit of that from the wildfire, I was familiar with the symptoms.  And from years prior, I have learned coping skills from professionals in dealing with certain types of stress and then practicing these skills, so…

no, it wasn't that.

What the hell was wrong with me?

It wasn’t until I had two weeks while alone at home that I found my answer. Mr. Foresterman went to visit friends and family, and I declined to go with. Living in a remote area where cell phones don’t work and you can go days without seeing someone even on the road can give one room to think.

With no one around I could think.

And so I did.

But the answer didn’t appear overnight.

~

Whenever I need to tackle anything, I first deal with the “who-what- why’s”, to find the “how”.  I identified those pretty easily.  But the how was kind of sticking.

I decided to spend some time with the horses. With horses you have to be in the moment with them. Its just the way they are, and what they need. Most times I get so relaxed when working with them. But not this day.

In a trying moment of  just "being", a certain thought kept popping into my mind and wouldn't let go; getting hurt. What if I get hurt, because no one else is at home? 

However this type of thought pattern doesn't work when trying to have a working relationship with horses. I had to lessen the fear about getting hurt, because that is what is required in horse training. It worked, he settled. I rewarded him by taking a break. Somehow, while sitting there in the saddle, I thought about what had just happened from my point of view - I had switched my narrow thought process and better things happened.

And that was the exact moment  I realized that my thinking process in my life has been skewed for the last five years. I had narrowly concentrated for five years on this thought and this thought only-

Being “cured.”

 It was so simple - my future was all about being cured. And so my eating and living habits were about being cured. My relationships with people were about curing the relationship in case of the “what if I wasn’t  CURED” issue.  I took so much shit from things/people/situations because everything needed to be a good  moment, a good thing, not confrontational, otherwise stress was not going to help being “cured.”  

And so there it was…

I lost me, because being "cured” became more important.

No wonder I was confused. Being cured is a good thing. But I had concentrated on it so much that I lost my way.  And now the statement of "being cured" changed in that moment of when my Doctor said 'really".  I have arrived at being cured. 

SO NOW WHAT?

Being cured is dead, long live being cured!

Okay, that personal mission statement wasn't going to work. I needed to think on something else. Soon enough I recognized I needed a new Feral mission statement.  About me. At first I didn’t know what to replace it with, because like, this just happened a little while back. I know, right?

I'm feral, remember. Be kind.

So I came up with a start.


  I'm a “work in progress”

Yep.

That’s me.








~
any other works in progress out there?


:)

Comments

  1. I'm so glad you're cured!!
    I remember how it felt...7 years ago I was told that I had breast cancer, only to be told a few weeks later that no...I didn't. I should have been elated, but instead I was an emotional mess! I'm not sure if I didn't believe it or what...but it was an emotional roller coaster for sure.
    Here's to many more years of being feral! :)

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  2. Your reaction is completely and totally normal. In fact, you probably do have PTSD. Many years ago I was told I had an incurable disease and a future of pain and medical treatments. Three months later I was told that I really didn't have it after all, but I couldn't believe what I was told. It took a LONG time for it to sink in and at this point I had suffered ill effects of medication that I didn't have to take. You have been through a lot. More than most people deal with in a life time. This will take time. You now have to live a new normal. Be patient with yourself. Get help/ therapy if you need it. I am very very happy for you. Be patient and kind to yourself. Animals and nature are some of the best therapy and you have both! -Jenn

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  3. This was exhausting to read. I am SO glad that you are cured. Please accept that you are!!

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  4. We are all works in progress. You just know it now. It makes sense to me. The purpose of you last 5 years is not there. Also, how can Anyone be afraid of being hurt when looking at death? So now that death is not tapping on your shoulder you can look out for other dangers (like a feral beast).

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  5. I am so glad and I think your reaction is normal. You can't just go from five years of worry to nothing in a moment. It took five years to rewire the neural pathways of your brain to deal with the disease, give yourself a little time to straighten those wires back out.

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  6. I'm very happy that you are cured. You can't undo five years of focus on "cure" in a few days or months. Be gentle with yourself. You will be back. :)

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  7. Janice, this is such wonderful news. I get an idea of how you could suddenly feel bereft in a way with that big cloud no longer taking up so much space in your life. Enjoy each day as it comes, dear girl.

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  8. Well, feral or not, you had to focus on being cured. But it was the ILLNESS that was cured. The Feral Girl is still there - she just took a back seat for five years. And hooray! It will be such a joy to get to celebrate you as a WIP. xoxoxo

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  9. Reading this, I got such a sense of freedom for you. Living in the moment is the greatest freedom, for me. And for all the wild and feral critters too. Of course you had to focus on survival and being cured those five years. And at one point in my life I had to as well, but from a much more common cancer than yours. It changes you and brings you to the point of loving the peace and freedom of the moment. I am grateful for every day of my life in a way I was not before. Sending love, your Swedish G.....

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  10. I get it! So happy for you and I love the "really" part. Keep hanging around those horses, there is good energy there.

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  11. I got it . . . REALLY . . .
    Go Girl . . . it is your, "work in progress!"
    Cured . . . wonderful!

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  12. Oh yes, my disease isn't like yours, but difficult to deal with. I don't think I'll have the same "I'm Cured" moment, but I'm learning to deal with it. I am so, so happy for you, and I can understand. The changing of channels is hard, sometimes really hard, but I have a feeling you will succeed!

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  13. Your done with that big monster. Onward and forward to more adventures. This time may the monsters be a little less scary and easier to defeat. OR just skip the monsters and the fires and take a ride in a glider or take a trip to a tropical island that doesn't sell drinks with little umbrellas.

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  14. Oh wow. Thank you for posting this. I've learned so much from reading it. None of us can imagine what it would be like unless we went through it. I can imagine it would take time to go from "fighting for your life" mode to "moving forward" mode. And you should for sure give yourself that time. There's a transition and you're at the beginning of it!

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  16. I believe every single one of us is a work in progress! Well done lady , You beat it, and now you get to find your way as each new adventure and day unfolds. What does it all mean? who knows, but I know with certainty YOU HAVE GOT THIS!

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  17. Yay, congratulations on your 5 year mark and CURE! That is wonderful news. It is a very big change in perspective and reality. You've lived with the risk of recurrence for 5 years. That's a long time. It became a part of you and I can understand that it would take a concerted effort to accept and transition to survivor. I appreciate your thoughts and feeling you have shared about your experience with this. I am just beginning my trek to the 5 year mark, following a cancer diagnoisis in July of this year. Caught early and removed with surgery; didn't even need chemo. My oncologist said I can consider myself a "cancer survivor". But the last thing he said to me in cautionary tone was, "It can come back." The percentage of recurrence of my particular cancer is small, and most likely to occur in the first 2 years. I have my first of many quarterly cancer checks next month. I don't feel like a survivor yet. I'm looking toward the goal of graduating to twice-yearly checkups. It is scary stuff. But your experience is empowering. I may need to borrow some feral spirit. Enjoy the many years ahead. Keep it feral, Feral Woman!

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  18. Hi Janice, visiting from JR blog. I found your perspective very interesting! Hope you find peace as a WIP :)

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  19. Always a work in progress, forevermore.

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  20. It is ok to cry. Break down. Break down to a pile of broken glass while the people around you jump, hoot and holler at your news. Give in to the grief, and let time bring you back up from the ground a newly formed crystal. You're not alone, just an individual.

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  21. Me, me, me! Congrats on your news and taking the time to "live" with it! How many times have I arrived only to realize there was more.

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  22. What a major life shift! Congats too and may you have the mental space to breathe big :)

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  23. I saw that you hadn't posted for a long time, so I planned to come over here to make sure all is well in your remote and feral world. And then you left a comment, such a nice one too. I've been a bit down in the dumps for a while and quite forgot I'm a Swedish Goddess, so thanks for reminding me. Us Feral and Goddess creatures need to feel the Joy of being Alive. I hope you found your Joy, I really do. It may take some time, but you are strong and beautiful and feral. Let us know how you are, OK.

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Im feral, I dont respond at all like most domesticated bloggers- However thank you for even wanting to leave a comment, as long as it doesnt involve death threats or name calling, I might even respond.

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