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Short lived remission and update


Deb W

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Hi everyone,

It's been a while...I didn't write mainly because I was waiting for the outcome of radiation, and then because of recent news.  I had radiation in the mediastinum in September and October.  The radiation worked and I was, once again, told I was in remission (thanks to Tom I have a much better understanding of what that means).   I went on a beautiful 2 week vacation in Naples Florida (I was even playing a little tennis and taking 3-4 mile walks on the beach daily and appreciated everything I was able to do).   I had been having flank pain on my left side for the past month or so, but it wasn't debilitating, however during the second week of vacation I felt it getting worse (I had reported it to my oncologist), began having to increase Norco and yet it was still painful so my oncologist ordered a PET on 12/23.  I was given the results the same day and now the cancer is in my diaphragm which I was told was rare.  My oncologist said in his 42 years of practice he's only seen 1 other patient with it (she did make a full recovery though😀).  We were going to be celebrating my daughter's engagement and Christmas Eve so I held it in because I didn't want to ruin anything.  I told them the day after Christmas...it was a lot to hold in and look happy. Turns out they suspected it because I usually text them after my visits. The good news is that it is small enough to have radiation and radiation has worked on me before.  So it begins January 12.

After speaking to my oncologist (who is one of the kindest doctor's I've had), I felt saddened.  He said that it's the nature of Stage IV metastatic lung cancer to reoccur and he was hoping I'd be one of the long term remission patients.  So he's planning systemic therapy (not sure what that will be but I can't tolerate Targeted therapy - we've tried that and I had an anaphylactic reaction.  After 7 months of chemo and immunotherapy I developed severe colitis so I'm not sure how we'll proceed.  One thing at a time though - I'm hoping the radiation works.  I'm not going to worry about stable tumors in the pleura unless they begin to grow again.

I had been working part-time through all of this cancer treatment doing telehealth appointments.  I think it's time to shut it down, but I will miss my work so much...makes me sad.  I'm planning to tell my clients next week.

We've gotta be tough and carry on, right?

Deb

 

 

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Deb,

What a heavy load you were carrying around during the holidays.  I'm so glad that your family now knows and can be there for you.  I believe you can be the second case he has seen that goes into remission.  You are in my prayers and thoughts.  I'm with Tom; "let the frying begin"...

Lou

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Hi Deb,

You are frequently in my thoughts, I’m sorry to hear about this latest update. The holidays make it especially hard… we always say that attitude counts and at the same time, it’s okay to feel sad… wrapping up at work can be very disorienting, feeling like you’re losing a small part of yourself.  
 

You are resilient and will find a new path- ironically one of the most empowering things I did was retire my license.  I wasn’t going to be able to keep up with the CEUs and didn’t want to feel like I was failing.  Having done that, it freed up my time for meaningful volunteer work.  I have the rare perspective of both a healthcare professional and a patient.   
 

I worked with the cancer center on a few initiatives which opened new doors for a Governor’s Task Force to expand palliative care resources.  
 

Rather than the other end of work, think about what new beginnings might look like for you.   The wonderful thing about being a volunteer is that it’s easy to say- pass- and not feel guilty about it.  
 

You’re very bright and articulate and can carry on…. 
 

Michelle

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Congratulations on your daughters engagement. Watching your family grow must be tremendously rewarding (I'm still waiting for my kiddos to tie the knot. Sure wish they would hurry up) 

I'll be praying your new treatment path is smooth and successful. It sounds like you have a fantastic Dr. 

Blessings to you and your family

 

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Things can change so quickly, can't they? I'm so sorry to hear of your new diagnosis. And yet, the news of your daughter's engagement is lovely and your doctor sounds like a gem. Sending you strength.

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Thank you all for your thoughtful comments.  I so appreciate this group.  Another update...having more symptoms so I need to have a MRI of my spine - that will happen next Tuesday and Wednesday is the start of radiation. Please keep me in your thoughts and prayers.

Deb

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