Hope

Hope

Thursday, June 9, 2022

She's fine. She's been alive so long and doesn't even look sick. -TRIGGER WARNING

 I don't pay attention to social media anymore, so unless someone tells me, I rarely know what's going on.  I am not purposely insensitive.  And I don't expect people to stop their world because of me.  I always love prayers.  But I mainly keep to myself because I know others have so much going on.  Unless something drastic happens, I never post about my condition anymore.  I have heard this so much, that I can't begin to explain how I have to just sit there and listen to people who have never been in my shoes, or tried, to chastise me for not checking on them.  I don't know if something is wrong unless someone tells me. I am doing my best to survive and be a good mother and good Christian.  Please forgive any grammatical errors or misspellings (sister lol).  I'm too tired to check.

Speaking of shoes, after over 9 years of tarceva, my nails are growing into my skin.  I'm constantly having to pull them out.  I'm going to see a dermatologist too, if anything could be done.  It's not just my toes, it's also my fingernails.  In fact, some of my toenails are just falling off.  All of my nails are weak and brittle and sometimes the nail breaks off in the skin and I have to keep digging.  I have a topical solution to put on them, but needless to say, it's painful to type because my fingernails are so thin.  

I've gained about 20 lbs since January.  Yay say most cancer patients.  But, the only reason I gained it is because I've been dealing with my nails and MRSA since the holidays.  I haven't been able to walk properly without pain.

Additionally, I have moderate degenerative cervical disc disease as well as a possible torn rotator cuff.  I've also been living with a fractured rib for about two years.  When I bend over to clean something, part of the rib makes presses inside and I have to immediately lay flat on my back.  It's so frustrating to barely be able to sit.  I mostly lay back or walk, not sit.

I've also heard how I've kicked cancer's ass.  That could be further from the truth in clinical terms.  I have a genomic mutation that will eventually find a way around my medication and I will become actively sick again.  By then, I'm biding my time and waiting patiently for something great to come up.

I still get pet scans every 3 months.  The first week in July I have an MRI, Petscan, Oncology appt, dermatologist appt,  Pulmonologist appt, Orthopedic appt, and a mammogram.  I'm pretty sure I will meet my annual deductible at that point.  

I just had a follow-up with palliative care, which has been a lifesaver for the pain.  Additionally, I will most likely end up in the ER because the back of my calf is hurting so bad I can barely walk.   Which could also mean a DVT (blood clot).  I still have two smaller pulmonary embolisms.

A friend called me recently, and I completely broke down crying because I felt for once, that someone without cancer was really "getting me".  

You see, most people think I quit advocating because I was cancer-free.  WRONG.  I will always be stage 4 lung cancer until the day I die.  The best I can hope for is stability.  My right lung is awful.

Don't get me wrong, I have been amazingly blessed by God to still be here.  I'm not sure why (which is the same question I asked when I found out I was sick).  The reason I quit advocating is that the loss broke me.  Yes, motivational speakers will tell me to carry on for them.  But I'm tired, so tired.  All of the women recently passed in the last year or two.  My friend told me it's like being in a war.  He's damn right.  But, I didn't sign up for this and neither did they.  So, I hold them and my father close in my heart. And a huge shout out to Lyndsi Kofal who wrote a statement last night that nailed exactly how I feel mentally and physically.

I've always felt like I'm running in circles, Einstein's theory of insanity when advocating.  I burned out.  And I decided, that whatever time I have left will be with my family.  So, I have pretty much distanced myself from social media.  I'll post pics of Karley and memories occasionally.  But, when I open my feed, I can't help but be so deeply depressed seeing other lung cancer friends fighting, but still going downhill.  

After all, your heart can only take so much.  Mine is shattered and I don't know if it will ever be repaired.  

So, as for the title, I'm not fine mentally or physically.  I don't always look sick when I put on makeup, but I am.  And living so long is a blessing in terms of my daughter, but a curse when it comes to relationships, mentality, and pain.

So, trigger warning, the worst of the Pics are at the bottom.  But these are 3 different nails.  They are still attached.  I've had 3 just completely fall off.  So, folks, this is lung cancer.  This is me and not a day goes by I'm not reminded of my limitations.



ON THE BRIGHBRIGHT SIDETSIDE. MY HAIR IS GROWING, AND MY DOG IS CONFUSED.

MY WORLD

THESE WOMEN ARE GONE.  THEY ARE JUST THE ONES OVER THE PAST YEAR OR SO.


I MISS MY LITTLE SISTER IN SUCH A SIMPLER TIME



TRIGGER WARNING:  GROSS PICS BUT THIS IS REALITY.  AND ITS OFTEN.
I DIDN'T TAKE PICS OF THE AREAS WHERE I HAVE NO NAILS ANYMORE.


This huge nail grew under my toe.














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