Reclaiming my life. Where the process... - Lung Cancer Support

Lung Cancer Support

3,999 members2,169 posts

Reclaiming my life. Where the process began.

Denzie profile image
DenzieModeratorVolunteer
17 Replies

October 2010 I had a severe bout with shortness of breath. I went to the ER where I was dx with advanced lung cancer. CT, PET and biopsy confirmed that it was stage 4 adenocarcinoma with mets to rt lung and liver. I had lost 50 lbs but I had been on a diet for a year and that did not seem excessive although I was tired all the time. I wrote that off to fatigue and depression- I had ended a 20 year relationship earlier that year. The aching in my joints were, I believed, side effects of meds I was taking.

By the time I was diagnosed I could no longer stay on my own. I had been living in a small loft apartment that was a 3 flight walk up from where I parked. The treatment plan was very aggressive and we were warned that it would be debilitating. My cousin made room for me so my family and friends closed down my apartment and moved me into her nearby home.

I had concurrent radiation and chemotherapy. My oncologists poison of choice was cisplatin and etoposide. I had 4 rounds of chemo and 30 rads treatments. It was indeed aggressive. And it kicked my patootie. Often,when thirsty, I would pick up my water bottle and fall asleep before it reached my mouth. I was not able to cook, do laundry or any other chores to help with my own care.

2011: Everytime I had my 3 mo CT I would find myself in pain. My bones had become brittle and ribs were breaking every time I laid on the metal table. The steroids used during treatment made my osteoporosis quite brittle. Using egg crate type foam on the table put a halt to breaking bones.

Prior to that on the day of my nieces wedding I laid back in the car and immediately was in excrutiating pain. Went to an orthopedic dr who put me In a back brace and scheduled appt to see surgeon. That week pain became intolerable. We went to the ER and I was admitted on a Friday night and had bone biopsy and kyphoplasty to T6 & T7. T8 was not far enough gone to require surgery yet.

Went home a week later where I stayed about a week when new pain developed. Back to the ER. My pleural effusion required draining again but I had also developed a pericardial effusion. The thoracic surgeon said I would require surgery again but it was not an emergency. We could wait a few hours! The next morning the surgeon performed a pericardial window procedure or cardiac tampanade. The next day they tried to perform a VATS pleurodesis but the pleura was badly loculated and the procedure aborted. My surgeon reported that she found necrotic cancer cell in my pleura. I left the hospital a week later with a pleurX catheter in the largest pocket of my left lung, which remained there for a month.

After I came through that I started thinking about what was to become of me. Most important, I asked myself why did I put myself through all that chemo and radiation. My answer came back, it was so I could live. I chose to get moving and do things- anything. Exercise helped me strengthen my much weakened core and I found I had more energy. Fortunately I required physical therapy and that's where recovery truly began.

Written by
Denzie profile image
Denzie
Moderator
To view profiles and participate in discussions please or .
Read more about...
17 Replies
scifiknitter profile image
scifiknitterBlogger

It's so very helpful for you to share this, Denzie. Thank goodness you had such stellar support from family and friends! It's a blessing to all of us that you are still here sharing your wisdom and experience.

Anita

Enjoyabull profile image
Enjoyabull

Your journey is so inspiring! I am in awe. Thank you for sharing.

Denzie profile image
DenzieModeratorVolunteer in reply to Enjoyabull

Its my hope that you can use some of my experience to inform your own recovery.

Enjoyabull profile image
Enjoyabull in reply to Denzie

I have to figure out how to get my energy levels back. I am on carboplatin and gemzar and I take 10 mg of Oxycontin every 4 hours. I have no appetite and I am washing food down with liquid or it makes me sick to chew. I am perfectly happy and comfortable lying here in my bed.

Denzie profile image
DenzieModeratorVolunteer in reply to Enjoyabull

Do talk to your dr about a fentanyl patch. You only have to change it every 72 hours. No need to wake yourself up to take a pill to get ahead of the pain.

Its bit likely that you will get back to pre diagnosis energy level. Energy is a function of many things including nutrition and efficient delivery of O2 through your system. Where the chemo and/or radiation have destroyed cancer cells only scar tissue remains. Obviously, scar tissue cannot oxygenate the blood.

You can rebuild some of that energy though and walking for exercise is best. If you have a YMCA with a Livestrong program nearby that would be ideal.

Enjoyabull profile image
Enjoyabull in reply to Denzie

Yes I will ask about patch and I have to force myself to walk. This is good advice. I dont understand why the Dr. would put me on these strong drugs if there were something like the patch out there that wouldnt make me feel so out of it?

Denzie profile image
DenzieModeratorVolunteer in reply to Enjoyabull

The patch will still leave you feeling a bit out of it but not having to set the alarm to stay ahead of the pain with the meds will give you longer, better sleep. The patch is an opioid. But its easier than taking oxy which is in the same class of drugs.

RwHayes profile image
RwHayesCommunity Superhero

Wow Denzie that's all I can say, I'm sitting here my lower jaw in my lap! You are one tough gal. I'm so glad you are here to help the rest of us.

Best wishes,

RW

Denzie profile image
DenzieModeratorVolunteer in reply to RwHayes

Thank you for your kind words. It hardly seems that I am that person some days.

Sending hope that you're having a terrific holiday.

RwHayes profile image
RwHayesCommunity Superhero in reply to Denzie

Hope your feeling well, merry Christmas

RW

Laura4 profile image
Laura4

Your story is amazing I am so glad you shared it. I am too trying to get energy levels back up. I will look into walking at the YMCA that is close to me that is a great idea.

Denzie profile image
DenzieModeratorVolunteer in reply to Laura4

Laura4,

Excellent move! Inquire about the Livestrong program. If they have one you work with a trainer who has extra education in aiding recovery for cancer patients.

Keep walking!

Denzie it was nice getting to know you better,although I wish you hadn't had to go thru all of that. You had a rough way to go. You are a inspiration to everyone sorry I didn't see your post until now. I wasn't on here when you wrote it. You are going to be the most inspiring woman for the month december thru january. If that is ok with everyone. I think once a month someone should tell there story and be told they are the inspiration of the month. Denzie you are a fighter and you didn't give up. So how are you now good I hope after all that Keep up the good fight. Jo

Denzie profile image
DenzieModeratorVolunteer in reply to

Jo- Thank you for your kind words. Sharing our stories brings hope to those just entering this rollercoaster ride. So many expect its an automatic death sentence and the only ones who can truly make them believe it's not are people like us who've proved otherwise to ourselves and our doctors. I was told 10-15 months and its 6+ years.

Your idea of sharing a story or highlight a survivor a month is a great one. Maybe as time progresses we can plan something out together. Many are not comfortable writing and we might have to take that task on.

In a few days when the holidays are past and become sweet memories, I will write more details. I am doing well. Better than anyone might ever have imagined.

anmcdonald profile image
anmcdonald

I had the same treatment that you did and am now feeling the pain in my joints. It hurts so bad some days I wonder also why I put myself through this. And like you my answer is to live. To be here for my family. A question for you has your pain got any better and can you breath any better now. I am 4 months post treatment and just feel like I could stay in bed all the time.

Denzie profile image
DenzieModeratorVolunteer in reply to anmcdonald

Pain management has been a constant concern. Sometimes I don't think about replacing the patch until the pain rears its ugly head or I experience withdrawal symptoms (fentanyl is an opioid). Then I'll replace it and use a Norco to get the pain back under control.

My dosage has come down quite a bit. At one time I was on a 50mcg patch I've been able to reduce that to 12mcg. At one point I was taking one or two hydrocodone 10-325 a day for breakthrough pain. Today I average about 10 of the 5-325 strength a month, usually using it after doing something strenuous (ranging from housework to pounding in fence posts with a small sledge hammer).

Every pain medication works differently. Sometimes I get achy and all I need to relieve it is a couple of Tylenol. It was a matter of trial and error for me to figure out when to take which.

Exercise was a huge factor in my ability to reduce my need for pain medication.

Its important for us stage 4 folks to know and remember that we don't have to be in constant pain. Pain impedes health both physical and mental. The last thing we need to concern ourselves with is fear of becoming addicted. For us it is a matter of Quality of Life.

Whoa, Denzie! You have been through the wringer! And look at you now. Well, I can't see you but wow, you are the definition of tough!

You may also like...

My husband could benefit from some prayers

due to location of his lung cancer. He went through 2 types of chemo and radiation. They both...

Stage IV Lung Cancer Diagnosed/ Life Expectancy

only with treatment (chemo & radiation) it will only help him with his quality of life. We had to...

Stage 4 adenocarcinom

adenocarcinoma stage 4 nsc lung cancer poorly differentiated. He had a liquid biopsy and dna...

Devastated! my Non-Small Cell Lung Cancer Transformed into Small Cell Lung Cancer

months ago with stage 4 Non-Small Cell EGFR + Lung Cancer. Had a great response to Tagrisso 80mg...

My dad has been place in hospice care at home.

hoping that the first run of chemo had at least help him with his pain and diminished the tumor he...