Well, here we are - 4 years after that dreaded initial diagnosis. I wasn't sure at the time whether my wife and I would be here together 4 years later, but indeed we are. 1 year, 1 day, 1 treatment at a time. After 4 years, though, I now know that I will never forget the feelings from those first couple of weeks.
So, my wife is on her 6th line of treatment and doing well. Three standard chemos, three "targeted" chemos (2 of which were via clinical trials). The lung tumor (which of itself the oncologist hasn't been worried about for some time) is the smallest it has been since diagnosis, and the liver metastases are currently at bay. Who knows what's going on with the bone and brain metastases, but no symptoms at all, so we are assuming those are being held at bay as well. RBCs and WBCs are on the low end of normal, but good. Liver enzymes are also now all normal. The abraxane has really been great so far.
Yet, there is no doubt that the side effects are accumulating. Her energy is good (certainly better than during the treatments that affected her blood cells more) but certainly less than it used to be, The neuropathy is mostly minor in terms of any numbness, but the gabapentin has to be taken regularly and dosage watched to keep the hand cramping at bay, and almost any alcohol at all causes some bad leg cramps at night. The tendons in her feet are acting up, but she's been to a podiatrist and its nothing serious (who knows if it has anything to do with the treatments).
So, here we are - one more year of life, one more year of love. Not to mention the excitement of our first grandchild due in August. The omnipresent fear of what may yet be in store is still there, but held in check. Our current life is, for the most part, about as unremarkable as we could hope.
So, for another year, I humbly want to give all of you at GRACE my thanks. For the advice, for the support, for the kindness, and for the comfort you give in just knowing you are there. May you all be blessed with love, joy, and the warmth of family and friends. Thank You.
Reply # - April 25, 2019, 05:54 AM
4 Yr Update
GRACE Community Outreach Team
Hi scohn,
It's so good to hear this update on your wife, with the good news that it brings. As you say, it's been a long road, with plenty of bumps along the way, but together you've faced all those challenges. The love the two of you share is clear with every word you write.. You have been a tireless advocate for her, and I'm pleased that we have been able to help.
We look forward to hearing more good news from you, including details on the birth of your grandchild. Lisa and I now have two grandsons, and they provide a profound joy that I never thought I'd experience.
Take care,
Jim C Forum Moderator
Reply # - April 25, 2019, 12:02 PM
Congratulations!
Scohn,
It makes me happy to read your post. Your story is so important for others, especially those new on the scene, to see that it's more possible than ever to live dam near a full life after a horrific diagnosis. I'm so sorry y'all have to live one day, one treatment at a time but I do understand it and the two of you have really done some fantastic living. I remember when your hopes were for you and your wife to walk your daughter down the aisle...check. Now it's getting close to time to welcome a grandbaby.
I'm thrilled she is doing so well on abraxane. No bone pain, no brain met symptoms, normal blood counts, primary smaller than ever...again, Wow! I hope she is able to take a break to give those long nerves a rest when needed.
Your wife is lucky to have such a dedicated advocate. I know you two pull strength from one another and I know you feel lucky too to have time with her after being confronted with this unknown trek. You 2 are never that far from my thoughts.
All the best, (I used to sign off 'All best' but since the be best movement I've decided a determiner is needed),
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - April 25, 2019, 03:25 PM
Scohn,
Operations Director, GRACE
Scohn,
I too want to chime in and say we are so happy to have played whatever little part we could have. I am so happy to hear this - good news rings louder than any bell I could ever put my ears on. hold each other tight, enjoy every moment, and that grandchild - wow. it truly warms my heart.
It is so easy to get wrapped up in the everyday frustrations of all of our lives. GRACE and stories like yours bring me back to the center and what it is all truly about. I am so happy you are sharing these years together, and here's to many more.
Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009. Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education.
Reply # - April 25, 2019, 06:28 PM
Scohn,I also want to offer my
Scohn,
I also want to offer my heartfelt congratulations. So glad that you can share such good news, and we're profoundly gratified if the information & support you've received through GRACE has helped. Janine, Jim, & other staff here, as well as the many members of the GRACE community have been invaluable. So happy for you!
-Dr. West
Reply # - April 30, 2019, 11:00 AM
Happy 4 Years!
Scohn,
This is simply amazing news! I am so happy to hear this, and I'm simply full of gratitude that you've chosen to share this with GRACE and let us be part of your family's journey. I truly am heartwarmed that you've found the help you need here. As Denise said, it's so easy to get caught up in the little things that come our way in life, mostly the bad things, and forget to lift up our heads and rejoice in the amazing, wonderful things that we have. Every day is precious, and it sounds like you and your wife know how much holding tight to each other means. You are both amazing, and we are the lucky ones who get to know you through this terrific forum! Thank you again for sharing this wonderful news!
Executive Director of GRACE since 2017. Joined GRACE to ensure that all patients and caregivers are empowered to obtain equal access to education about treatment options.