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rayj3497

i am alive

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hello again. its been awile.so a little recap. my name is raymond johnson and i had my first biopsy on 1 april 2017 and diagnosis with non small cell squamous lung cancer.

 due to local medical delays, i finally went to memorial sloan kettering for treatment. i was given tencentriq for pre surgery treatment. then surgery was delayed twice due to electrolytes unbalance. on 1 aug 2017 i had my surgery. my right lung was removed with clean margins. no cancer cells left behind. but. my surgeon said i had a very massive muscular vascular chest wall, which made it hard to close. so, after 5 chest surgeries to fix the many air and blood leaks, 2 cardiac arrests, 2 strokes/tia, pneumothorax, compartment syndrome , massive electrolyte imbalance, i survived. i am alive. i have pain from the surgeries, going to rehab 3 times a week  and my local doc is taking over in managing my synthroid meds. but i am alive... to be continued...... peace and love to all

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this is a good update to read.  I'm so glad that you are alive and life WILL be continued....  best hopes for your pain management and swift recovery!  Keep posting. We continue to be here for you!

 

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Ray,

Welcome here. Your surgical experience was like mine but worse. My thoracic surgeon was more like a plumber chasing all my leaks and so I know of what you speak.

The thing to do is recover your strength. Enrollment in rehab tells me your medical team believes you can improve your physical condition and therefore life style.  Life after lung cancer is all about living and rehab makes more living available.  So cooperate and graduate.

Very nice to hear from you again.

Stay the course.

Tom

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Hi Ray and welcome.Boy, you have beethrough a lot! Alive is a good status.  Your story will be an inspiration to those facing drastic treatments. Please keep us updated. .

Hang in there.

Bridget O

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well , i start on stage 2 for treatment, ........3 oct i first week and first day with treatment of gemcitabine,  second day, ( cause my blood work is still wack out) blood transfusion.... second week,  day 1, treatment with gemcitabine and carboplatin, second day blood transfusion if necessary, .....third weed no treatment and that's the end of cycle 1. 3 more to go for a total of 4 cycles. i have my first ct scan and pet scan in dec scheduled.. now if i can only stop some of the incision pain from the 5 chest surgeries things will be okay......sometimes pain goes from a 10 to a constant 3/4, when i was in the military, back in the day, army and retired air force, "one has to be alive to feel pain" and being alive is good, so, peace and love to all

 

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Ray,

I understand pain. As a former army guy, I know you understand persistence. You can do this thing if you want to and you are absolutely correct.  One does need to be alive to feel pain. It is kind of like basic training. The morning runs get easier every day.

Let us know about the side effects you have from treatment.  Some members may have ideas for dealing with them.

Stay the course.

Tom 

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well, i just read the path report from my surgery and i have T3N1M0, stage IIIa NSCLC. just sharing.

BTW, i have told everyone and still telling everyone , I will beat this.....

peace and love to all

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Ray,

Your diagnosis is exactly the stage as mine.  T3N1M0 - my tumor was greater than 7 CM but did not invade surrounding tissue.  I staged at IIIA also and most importantly, after 3 surgeries, 4 stent insertions, conventional radiation, 18 infusions of Taxol and Carboplatin, and Stereotactic Body Radiation Therapy,  all in 3 years of near constant treatment, I'm alive.  If I can live, so can you.

Stay the course.

Tom

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Wow, Ray, you're another one who's gone through the wringer with the surgery.  Hopefully things start to get easier from here on, even though you will be dealing with the pain and other fun stuff for a while.  Hang in there!!

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Hi, Ray,

I hope that the pain lessens with time. You've shown incredible strength and perseverance. We know you can get through this.

As always, we are here for you.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Please forgive me, it's been awhile since my last update. I have been busy.  So, here it is. When i was in sloan , my lab results were a mess from the 5 chest surgeries, but the values were improving. the values that was higher than normal was getting lower and the lower ones were getting higher. the hospital did say i could go home and have my pcp take care of the rest. btw, tencentriq wiped out my thyroid gland prior to surgery, so synthroid levels needed to be  monitored. anyway, i get home and the values start to go in a negative  way especially my red blood cells. on 09/21-2017 rbc 2.75, hemoglobin 7.7, hematocrit 24.1. on the following week i had another test done, i  personally don't have the results but,  i got a call from my pcp to go to the er. for an immediate blood transfusion. off i go to albany medical center where i get 2 units of blood and my values got me out of the danger zone. when i left there a week later i was told my hemoglobin was 9.6. low but going in a positive direction, also while i was there i had the hospital do a ct scan with contrast of my chest, abd, pelvis and legs to try to find out why my values dropped. they found no bleeding but did find the dvt in my left groin and a popliteal aneurysm in my right knee. once again nothing more they can do. i did have a appointment with sloan on the 10 oct so i just waited. yesterday , 10 oct went to sloan , had blood drawn and my values were  rbc 3.68, hemoglobin 10.1, hematocrit 31.1. so things are moving in a positive direction and good enough for chemo. they started my chem schedule with gemcitabine and go back next week for gemcitabine and carboplatin. well , that's all for now. i with get through this and beat this. sorry but before i go today i have to share one more thing. kinda funny. i was whinny to the doctor yesterday that i couldn't do all the things i could of did last year. i guess i sounded like a new recruit or private/airman when the doctor said, " mr. johnson you should glad to be alive and remember you only have one lung " just a reality adjustment i guess. i just can't  accept , right now, "the new normal".         i will fight.     i will win.        until next time. peace and love

 

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Ray,

I really like your strategy -- fighting with a definitive goal in mind, the win!

My wife is the target of my whining and she is a lot less diplomatic than your doctor.  One lung or two, she reminds me I still have a life to live.  Unless...I want to give up.  So we have a parallel view!

Stay the course.

Tom

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Hi Ray,

 Alive is a good status! Alive with test values improving is even better. You're entitled to some whining, I think. You can be grateful and determined to win and still whine a litte. Cancer takes a lot from us and there's some grieving to do. You can grieve and live at the same time. Hang in there!

Bridget O

 

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