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A New Chapter


Tom Galli

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Perhaps you've noticed. My activity on this treasured Forum has declined. Folks have inquired. I've been hesitant to respond; perhaps my faith and hope that things might be different caused a lack of candor. I'm nearing 20 years of surviving Stage IIIB diagnosed, Stage IV progressed squamous cell non-small cell lung cancer. Longevity after diagnosis in my day is a miracle. Thankfully it is much more commonplace today.

No, I don't have a lung cancer recurrence. I'm cancer-free as far as I know. My annual oncology consult with low-dose CT is in September but I'm not concerned. My daily trial is pain. I've had chronic pain from taxol (burning toes sometimes called taxol toes) and a constant throbbing at my open thoracotomy incision site. Eighteen taxol infusions have left their mark; three open thoracotomies in the span of 7 months are the painful surgical side effects. Now nearing 73 years of life, 2 Army injuries have joined my parade: herniated disks in my neck and lower back. Moreover, muscle cramping, another taxol-induced problem causing low magnesium in my bloodstream, is worsening. I'm not sleeping, at least not having restful sleep. And yes, my physicians have tried every sleep remedy. My GP is still trying.

In a recent consult with my GP, he advised that I not seek surgical care for my herniated disks. He is concerned about my pulmonary insufficiency, and I'm waiting for my pulmonologist's view. Of course, the orthopedic surgeon counsels little risk. But surgeons are surgeons. My neck and back may be correctable, but I might not survive the surgery. My GP also wants me to ask the pulmonologist about O2, 24/7. I'm currently using O2 at night (attempting to sleep), but 24/7 tethered to a leash would be a new chapter in my life. 

I check the Forum every day and thankfully we have a team of folks who welcome and provide meaningful suggestions and support. I'll be in the wings cheering all on from the sideline. As always...

Stay the course.

Tom

 

10 Comments


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Dear Tom, 

I'm so, so sorry you are suffering. I hope you will seek ideas from a palliative care person. Most important, I hope there are approaches that might bring you some relief. I wish I had possibilities to offer. 

I'm sure it feels like some doors are closing, but I'm also sure that you will try to find others you can push open. 

Please keep us posted.

Karen

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Oh no Tom, so sad to hear about your pain. Damn this disease causes so much suffering even when it is cured! I hope your doctors will find a regimen that works better for you. Is your O2 dipping low day and night? Is this due to mere passing of years or what is the explanation? I feel occasional shortness of breath and find O2 dipping to 90%ish on occasion during sleep (Apple Watch report) but doctor said it is normal for people to have that sometimes unless it happened often. Please take care and reduce risk of infections so you help your lungs. Keep us posted.

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Tom, I'm so sorry to hear about your increasing pain. Do you have a pain specialist or palliative care doc on your team? I wish I could email some pain relief and good sleep, or just send it through the air. Or something. You are a model of hope to so many of us. It hurts to see you suffering. Hang in there, dear Tom.

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Sorry to hear that you are living with chronic pain it can get you down that's for sure, I just wanted to wish you well and I hope a solution is found to make your life a little easier,

Sending love and good wishes from Oz

Marilyn

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Hi Tom,

Sorry to read your blog about the pain, and sleep issues...I too had/have sleep issues, three weeks ago I found 

insomniacoach.com, Martin Reed....I am doing much better, you might want to check the site out, also I listened to his podcast prior to signing up.

I finished my radiation last November 19th, and am having my 4th scan tonight.  

Prayers and blessing

Evie

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Tom, I’m sad to hear that you’re having so much pain. I’ve not been on the site for months and your blog was the first post I read this morning. You have always been a blessing with your right on responses to me and others. I hope you are getting some relief from the medical community who can be so reluctant to prescribe medication for chronic pain. With love from Suzan.

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Tom, Hope you are feeling better.  When I first came to Lungevity I was so relieved to see all your blogs and especially the information on suv values.  I had a  scan that really scared me because of a high suv value, so glad you wrote the blog and helped me. Unfortunately, the information on google scares the heck out of you.  Tom, you have been my lighthouse navigating rough waters.  I will keep you and all the bloggers in my prayers......Love Evie

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