Remission! Then what?

[RickNH]

In 2009, I had a upper right lobe lobectomy. Simple, stayed the Lahey Clinic for about a week. The nursing staff was great, my wish was their command. I could not have asked for better. The first 5 years were simply a piece of cake. No meds, continued physical activity with no changes. I was cancer free. Thankfully, I was able to begin my relationship with the American Lung Association of New England. In 2010, I rode my bicycle in my first charity ride after recruiting a friend to ride with me. I rode every year with different folks joining my team and we raised a significant amount of funds for the ALAs research activities.

In 2014, I went for my 5th CT scan. I was sure it would be nice & clean, but call it morbid humor but I was diagnosed with Stage 4 NSCLC EGFR L858R Adenocarcinoma. So, my life changed that day from one with no worries to one causing me to learn how to live with lung cancer. First, I had 10-days of radiation on my lumbar spine, one of the metastasized area, the other being my thorax lymph node, I think. At the end of September, I began my first dose of Tarceva at 150mg. In December that was cut to 100mg and sometime later, I was cutting the 150mg in two to take only 75mg each night.

My cycling continued with lots of training rides of 30 - 50 miles and I loved it. I was able to continue riding in the Cycle the Seacoast Trek, raising more funds. My last ride was in 2016 with a couple of my adult daughters, my teenaged grandson, one cousin and my oncologist and his nurse navigator. What a thrilling day that was.

Since ‘16, I have been unable to ride my bike as it hangs on the wall in my shed, just waiting for me. I was deemed to be in remission the following year, but I didn’t feel at all like I was. My whole spine, hips, knees and feet are wracked with osteoarthritis, making my days not like the picnic it was in my first 5 years as a survivor.

It’s not been easy putting up with this thing that has been restricting my physical well being. Some days it is more difficult getting around than others, but for sure I am on the right side of the grass and very thankful.

Busy week this week with cataract surgery on my right eye and trial surgery on my back with a stimulator unit that is supposed to help me to reduce the pain. If it works as advertised I will have some portion of my life back. It’s gonna be a great day!

Please don’t feel sorry for me, just pray it all comes out successfully in the end.

Every lung cancer survivor is in my prayers. I don’t know you, but God does.

God bless,

Rick

[RickNH]

Last Sunday, my best cancer buddy lost her battle to this awful

stuff. She and I were diagnosed on the same day in 2014. Every other week we met for coffee and survivor conversation. Jeannie was a great gal friend. When things got worse I got to know her husband also. He took care of her every need right up until she passed. It was very sad, but she is in a better place now and has no more pain. God blessed me with her 5-years ago. Very sweet and I miss her terribly.

[Denzie Moderator Volunteer in reply to RickNH]

So sorry for the loss of your friend. There’s something about this experience that forges deep, close, meaningful relationships quickly. I’m glad the two of you were able to share your lives if only for a bit. You are both lucky.

Sending hope, prayers and healing mojo that this surgery gets you out of pain and back on your bike.

[Gatorb8]

Hi Rick! God bless you! I know it is not easy what you are going through but be positive. Thank God for a perfect first 5 years and that you are still here after 10. My oncologist tells me that if it is coming back, it will in the first 5 years so I would feel blessed! Good luck to you!🍀🍀

[Feelingblessed2013]

I am sorry for your loss, but I am glad you are still on the "right side of the grass". I feel the same way, any day I wake up in the morning is a good day.

Good luck with the simulator, I hope it works for you.

[Seaspray298]

I can so relate to what you are going through although I never got to have surgery being stage iv from the beginning diagnosis in 2014. Although I have had many progressions, the drugs and radiation have luckily brought me back to stable each time. I recently went back to my Rheumatoid dr to see if any auto immune issues have crept in from the immunotherapy's I have been on for over 4 years. I have osteoarthritis in my neck, shoulders, spine, hips and feet. But, he says it is from wear and tear from all my athletic training my whole life. My heating pad became my best friend and the occasional Advil. He prescribed Celecoxib (Celebrax) at night but I have not used it. I do find working out at the gym and walking keeps me loose but at night I go into the locked up spasms.

I understand your loss as I lost my husband 2 years ago. Then 3 weeks ago my brother (to colon cancer) which has completely devasted me. Those were my caretakers should I go downhill quickly. Being alone with this death sentence is quite scary.

Best wishes for a successful surgery!

[RickNH in reply to Seaspray298]

Thank you for your reply. My heart cries for you with the loss of your brother. Do you have a support group to spend time with? I used to be a part of one that was general in scope. What do I know about breast cancer or brain, liver and so many more. I needed one that concentrated on lungs. The good side of this was that I was able to meet new people and listen to their stories. The group is still going but I’m not. Now that Jeannie has gone on to a better life, I am very happy for her. Her wake is this afternoon with the funeral tomorrow morning. I appreciate your response and caring. I pray for you to have peace.