My Journey: My journey started in November 201... - COPD Friends

COPD Friends

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My Journey

Feelingblessed2013 profile image

My journey started in November 2012. I had surgery for diverticulitis, the surgeon had to remove about 6 inches of my large intestine because it was twisted. One of his inside stitches let go so 5 days later my temperature was over 103, I was septic. Emergency surgery, a few more days in the hospital and I went home with a temporary colostomy bag and an open abdominal wound.

Fast forward to May 2013; I was preparing for the reversal surgery, but the chest x-ray showed a spot on my left lung and damage from emphysema (October 2012 my x-ray was clear). That x-ray led to a CT scan, a thoracic surgeon and a PET scan. In June I had the reversal surgery done. In July (the 8th to be exact) I had the lung surgery. In less than 2 months time 1 tumor become 2 and after the biopsy came back positive, the thoracic surgeon removed the upper left lobe. He tested 5 lymph nodes, all came back clear. The next day I was told that I had a very aggressive, very fast moving form of cancer, but he got it all, I was in the 60 percentile (??????), he then walked out of the room. I had no idea what kind I had, what stage I was, nothing. About a month later I wound up with a bladder infection so severe it landed me in the hospital. I was told that my immune system was severely compromised because of the lung cancer. It was also suggested that I go to a cancer center for a second opinion and to learn about my cancer. I went to Roswell in Buffalo, NY and learned I had squamous cell lung cancer, stage 2, but I was indeed cancer free. I tried chemo just to try to kill any little cancer cells that may be lurking inside me, but I only completed half the treatments. Every time I got chemo, I wound up in the hospital with an infection.

In the past 2 years I have had shoulder surgery, and 2 abdominal hernias repaired, one large and one small (further proof that my first surgeon can't sew). The small one had to be repaired twice.

I also have a herniated disk in my neck that's putting pressure on some nerves. I've had it for years, but it seems to be becoming an issue that will have to be addressed. Just sitting here typing, my shoulder blade feels tingly, like it wants to go numb, I get pain in my wrists for no apparent reason, and my hands seem to be losing strength.

For the past two years I've had a problem with my right leg buckling when I am walking, it only does it every once in a while. I have fallen a few times so I walk with a cane. They can't find a reason for my right leg and now the left leg is acting up. I had disk fusion surgery in my lower back over 6 years ago, but per the MRI, nothing there to cause it.

I "retired" last year at the age of 59 because I was out of work more than at work, it wasn't fair to my employers or the people who counted on me to be there for them. The stress was also starting to take a toll on me.

Now hubby and I are both trying to survive on SSD ( his neck is fused front and back C2 to T1 ). BUT...we are both still here, still kicking. My emphysema is still mild and as far as I know I am still cancer free, last CT scan was January 2017, next one is January 2018.

I am getting a bit concerned lately however, my shortness of breath upon exertion seems to be getting worse. I am really hoping it is just the humidity lately. We will see what happens in the fall when the weather gets cooler.

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Feelingblessed2013 profile image
Feelingblessed2013
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15 Replies
Sandra1944 profile image
Sandra1944

Maybe you should check it now.

Feelingblessed2013 profile image
Feelingblessed2013 in reply toSandra1944

I have thought about it, but I have never been one of those people who run to the doctors with a cold or when my allergies act up.

Right now I am hoping that it is just a matter of learning how the weather will now affect me, but what really worries me is the fact that I had no symptoms of the lung cancer, and when it was found it grew pretty quickly.

I think I am going to make an appointment with my PC and ask for a blood test to check my white cell count. Got to talk to him about my other aches and pains anyway.

I am only 60, I'm too young to feel this old. :)

Forgot to add this to my post: I also have sleep apnea and use a CPAP machine every night. Although I have never woke up gasping for air, I had a sleep study which said that I stopped breathing once for a few seconds, but my breathing gets so shallow that my O2 level drops. At one point, as low as 73%.

I hate that stupid mask, I think I should have gone on nighttime supplemental O2 instead.

phyllis_liberty profile image
phyllis_liberty

Hi my friend,

What an amazing story you have. You have been through so much!! :o I know I complain, and probably shouldn't. There are many others who have, or have had it worse. I had a messed up operation also....where they cut my bile duct during gallbladder surgery. I almost died. I still hurt from the clips that are in me...which I had no idea they left there until last year!! I wonder now if they would take those out of me. Some say it's common to leave them in after they cut something in you. Hmmm....right!

Anyway, if you need to talk about any of these things you are going through, I'm here for you.

Phyllis

Feelingblessed2013 profile image
Feelingblessed2013 in reply tophyllis_liberty

I feel the same way, I really have no place to complain, there are so many people who have it so much worse.

You know, I had forgotten, I also had my gallbladder out. That was after the lung surgery and before the second hernia surgery.

You are right, I think its weird that they left the clips in. I could see staples, but clips???

The only abdominal pain I have from my hernia surgeries is every so often I move the wrong way and it feels like something moved up behind my ribs that isn't supposed to be there, but it only lasts a few minutes and pains gone.

You will be happy to know that I have an appointment with the NP on Monday morning.

I do appreciate your friendship Phyllis, I too am here if you ever need to talk.

Kate

phyllis_liberty profile image
phyllis_liberty in reply toFeelingblessed2013

I know...maybe staples, but clips? Two of them, and I read about it, and they can migrate all around the abdomen after a few years. Crazy!! This might be why I hurt when I press on my back ribs. Maybe. ?? I'm tired of them saying there is nothing wrong back there, when it hurts so bad at times. Drs. ... do they even care anymore? :(

Feelingblessed2013 profile image
Feelingblessed2013 in reply tophyllis_liberty

Maybe look for a doctor willing to go in and remove them? I feel bad that you have to live with those clips in your abdomen. :(

phyllis_liberty profile image
phyllis_liberty

I found a new GP on Thursday, and she is awesome. She is part of the MDVIP group. (I think that's what they call it). Anyway, you pay extra money per year to have one on one...extra time...more advanced treatments...etc. I didn't know if I'd even go for that, but she is one of the nicest people I've ever met.

Feelingblessed2013 profile image
Feelingblessed2013 in reply tophyllis_liberty

Please keep in touch, let me know how you are doing.

CLARAmay profile image
CLARAmay

Hi there KatherineK, you are hell of a strong lady, I take my hat off to you, take care and have a quite few days x

Feelingblessed2013 profile image
Feelingblessed2013 in reply toCLARAmay

Thank you, but I'm just me. After I wrote this journal, I found out I had a "new original" squamous cell lung cancer, this time upper right lobe. That lobe was removed April 2018. But I did it, I beat cancer again, I am still here, still breathing.

CLARAmay profile image
CLARAmay in reply toFeelingblessed2013

You are a very brave and strong lady to go through what you have gone through, wow you must fell so so good, are you in London?

Feelingblessed2013 profile image
Feelingblessed2013 in reply toCLARAmay

I'm in the states, New York State to be exact, but nowhere near New York City. I am by lake Erie. Where are you from?

CLARAmay profile image
CLARAmay in reply toFeelingblessed2013

Hi I’m from New Zealand, but live in Australia.

Feelingblessed2013 profile image
Feelingblessed2013 in reply toCLARAmay

I'm from Buffalo, NY and I live near Buffalo, NY . I did move to California many many years ago, but I came back to NY.

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