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Internal Outburst

New here. Palliative Care for my Mother

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Hello All,

Guess it's time for me to join the unfortunate group of people dealing with or taking care of someone with cancer.  I have to say, I HATE that I'm here!  I HATE that people have cancer!

Ok.  Enough venting.  

I'm not as versed as most here on all the acronyms and medical speak but here goes:  After several pleadings with my Mom to see a GP, for screenings/wellness (as she never saw a doctor for annual checkups her whole life), she finally agreed.  Long story short, her GP insisted on a colon screening.  The tests results showed a concern so I took her in for her FIRST, yes FIRST colonoscopy at age 76.  At post-op we were informed that she had inoperable colon cancer, "sorry but you're not going to live much longer", what an a$$hole doctor!

This is when life hit everyone very quickly!  I immediately went into a 'Let's focus and fix this' mode, which is where I have been for the past 2 yrs.  Surgery was immediate to remove part of the colon and several lymph nodes followed by a year of chemo.  YAY, no cancer after the 3 month follow-up scan!!! BUT 3 months after the clear scan, a large tumor appeared on her next CAT scan.  PET scan indicated that the mass was floating within her abdominal cavity and not affixed to an organ - good news!  Surgery scheduled to remove the tumor.  All was good!  Unfortunately during the typical 3 month follow-up, METS on her liver, lung and abdomen. 

It is at this point that I lost it!!  I could no longer be strong, focused, nor help my brothers and my own children with their pain/questions or put them at ease.  I truly LOST IT! We were informed that she is now on palliative care.  She had her first treatment of Keytruda yesterday and I'm on pins and needles hoping that she does not have a bad reaction. 

I HATE that my Mom is going through this!  I HATE that she's more worried about ME then herself!  I HATE this disease!  I HATE having to research names/terms/stories/information that I use to be so ignorant about.  I'm soooo angry and I'm soooo afraid and I'm hurting and I can't stop screaming in my head - "NOOOOOOOOOOO!!!!!!!!!" as tears continue to flow.  I HATE everything about this disease.

Prayers to ALL here!

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Hi Internal Outburst,

HATE is a common word used with cancer.  I'm sorry you have to relate to these two words.  I had very similar feelings as you 3 years ago when my mom was diagnosed with her lung cancer recurrence.  I completely lost it. I could barely function at work and was very thankful that my husband worked nights so I could come home a be crazy.  The first step in my healing was finding LUNGevity and finding some hope.  I now try to give back some of the hope that I received along the way.  So, here we go....

Your mom is taking a very popular new-ish cancer treatment drug that is classed as an immunotherapy drug.  My mom was on it for about 1 year, along with chemo.  It worked well for her.  Side effects with immunotherapy alone are usually pretty mild - rash, itchy skin, hair thinning, and lack of energy being the most common.  My mom eventually developed serious inflammation in her GI area which resulted in her having to stop the treatment. But that was well after she had had no evidence of disease.  (BTW, my mom was in her early 60's when this all started).  Alternatively, my aunt (who is in her late 60's) just finished 2 years of Keytruda for Melanoma.  Her side effects were only hair thinning, dry skin, and lack of energy.  She continued teaching 3rd grade throughout her treatment.  There are many other success stories for Keytruda.  If the drug is right for your mom's cancer, she is in good hands.  One question - are the mets your mom has lung cancer or another form of cancer?

Also, a note about palliative care - it's great that your mom has the option for it.  Palliative care is not end-of-life care.  It is not hospice.  It is a helpful program designed to assist all forms of treatment and recovery (it takes into consideration all health issues someone may have rather than different docs dealing with different issues).  Palliative care also does not have to be permanent.  

Finally, please know we are here for you.  Vent to us, if it helps.  Also, know that these feelings are temporary.  You will find your way.  Caregiving and advocating is overwhelming on its best day, but you will get through this. 

Take Care,

Steff

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Hi Steff,

Thank you for your response. My apologies for the delay.  I have found that my emotions go from highly optimistic to sadness and then complete numbness.  It truly is a roller coaster.  Thank you for not judging my rant!  I guess I'm just surprised at myself that I was so strong during the first 2 plus years and then I felt we "lost the battle".  I am aware that she is not going thru hospice, as we already went through that with her significant other of 35 years due to lung cancer that spread to his brain, lymph nodes and adrenal glands.  He passed very quickly after diagnosis, (less then 3 months).  His passing was 5 years ago.  

The more that I read into cancer, at this stage, I'm finding out that doctors are looking at cancer differently.  Patients can live longer and they are treating it as a chronic disease.  I can deal with that.  At this point she has not had any side-effects with Keytruda.  Hoping that continues.  Fingers crossed!!

Thanks again for your response! 

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I completely understand the roller coaster of emotion.  

When my mom was initially diagnosed and went through surgery, then follow-up chemo and radiation, that was when we were first told that her lung cancer isn't "curable" (I was naive to the persistence of lung cancer back then!).  When my mom was diagnosed with her recurrence, a year later, it was then that I started to see the shift in cancer treatment - as you said, treating it more as a chronic condition.  At first, I had a really hard time accepting that, my mom did at first too. But now she just goes with the flow.  She is somewhat prepared for the time when it pops up again (as prepared as you can be) and understands that it probably will pop back up.  She uses the phrase "buying time".  At first, that was a negative for her, but now she sees it as a positive because not everyone has the chance to "buy time".  

Basically what I am saying is that the constant roller coaster of emotions has slowed down for us.  It's been a long time coming (longer for me than my mom), but it did come.  I truly believe it will come for you too.  Ohh and I am very happy that your mom is tolerating Keytruda well - it can do wonderful things!

Take care,

Steff

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Hi Internal Outburst.  I'm glad you found this group and hope it helps you navigate better during your mom's treatments.  There is also a free help line available if you ever feel that you (or your mom) would need it.  It is staffed with oncology social workers and they can help in many different areas including ways to deal with stress and anxiety.  Here's the link for more information if you ever feel you need it.  https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline

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Internal Outburst,

Your Mom's story is heartbreaking to me.  My lung cancer required surgery and no chemo.  I was blessed because it was found so early (by accident).  But know that my prayers are with your mother, you and your family.  

Lou

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Internal Outburst,  You have found a great group of people to vent with!  We are here for you to help you, your Mom and other loved ones as you all go through this journey. I am 62 and was diagnosed with stage IV lung cancer with brain metastasis in April 2019.  Since May of 2019, I have had infusions of Keytruda at 3 week intervals and am showing progress.  The tumors are shrinking and I have had no bad side effects, only fatigue which I constantly fight!  There is hope.  Please know that you and yours are in our prayers.  You take care now.  Susan Rae

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