Jeanne Lambert's journey
I’m just me…a wife , a lover of travel and adventurer with my husband john, a mom of three beautiful girls and Nana to eight grandchildren, an RN both by degree and of the heart, and a long -time survivor of metastatic neuroendocrine cancer. In the afternoon of May 15th,2004 I left the perianesthesia Unit knowing something was simply not right for me. Nagging fatigue and increased wheezing (I was told “adult onset asthma”). I once again sought the advice of my physician. She insisted “ I take a two week medical leave and do whatever I do to have fun, not work”. Vague symptoms for a few years had been appearing often but no answer to why irregular heart rate, labile hypertension, hot flushes, wheezing, intermittent blood in stool. Was I imagining some of these symptoms? Just two days into my “Medical Leave”, May 17th, I acutely experienced severe cramping as well as a large loss of blood throughout the day, I prepared for a colonoscopy first thing Monday morning. The findings: a 2 cm tumor that extended through the bowel wall . By evening my first surgery (a right hemicolectomy and re-anastamosis) and finally a diagnosis…”Metastatic Carcinoid Cancer” , the surgeon told me there were hundreds of tumors peppering my liver and not a lobe was spared per biopsy. Pretty hopeless , an average of 1 to 5 years to live with that much disease.
HOPE was born in the fall of 2004, at a carcinoid conference in New Orleans, John and I attended. It was there I realized the importance of seeking the advice of physicians who have a passion and knowledge of this disease. Yes, there were some treatments available, most on the cutting edge (Literally) and the first time I was offered a second look at my liver and, yes the first time I realized HOPE was definitely a possibility for me. My first liver resection Nov. 8th 2004.Instead of hundreds of tumors there were only 5. All were able to be removed or burned by Radio Frequency Ablation, and it would be a watch and see game.
The year 2005 was the beginning of the ensuing 10 years when the word HOPE would become a part of my families vocabulary, a part of our families heart as the result of this uninvited cancer. HOPE was a significant weapon to me for fighting my cancer. A 5K road race was born along with Educational Events. This event enabled us to bring in speakers from LSU, Portland OR, UC Health, University of Iowa, just to name a few. Our neuroendocrine community was not sitting around wondering what to do with this univited guest in our body, we were becoming EDUCATED and we were FIGHTING. Knowledge, Autonomy and Strength … we were all of that. Along with the educational events, Dr. Lesley Stabinski and I decided we needed a group that could share with each other, help each other with this personal war with this rare cancer, carcinoid, we were fighting and we were not giving up! If Lesley would head it, I would drive to Denver and do what I could to help her.
2005, Our very first Run for Hope 5k , The Motto: ”Life is a Journey, not a Guided Tour”. So much support, so much passion…Giving HOPE that others might receive it…from every corner, so many hearts from every walk of life participated in this Run for Hope as far away as New York, Nebraska, Kansas, Montana, Massachusetts and even Ireland! The passion and endeavor of the Run for Hope 5k embraced its Mission Statement to “maintain the vision and raise awareness of carcinoid (now called neuroendocrine cancer or NETS), provide education, share HOPE while raising money for cancer research.
2007 found me once again in surgery for more debulking of that liver “infested” NET . Success and several years of GOOD healthy liver with very little evidence of cancer.
In November, 2011 this entire endeavor had reached a point we felt we needed to form a non- profit organization. Its name: The Neuroendocrine Carcinoid Cancer Education Association of Colorado was formed. A big name…a big task! After 10 years of managing the race, my heart felt sad with the losses of those I had met through our journey with NET, those who I had come to love so dearly , my body grew weary and I felt it was the right time to give the Run for Hope 5k away. Since we were no longer raising dollars for educational events, it was not necessary to maintain the non- profit organization, so changes did occur. The Torch changed its flame size, and the run for hope 5K became nonexistent after 2 years. But the torch burned brightly for continuation of a Colorado NET Support Group. After the Lesley moved to Texas, Cy ball stepped forward to be the leader. We sadly lost Cy to complications of NET but our dear Lela Selby took the torch and you know that precious Lela never ever says No!
Where am I now? Everyone here has a journey, an experience that is like none other. We are the same species, we have the same diagnosis (Neuroendocrine cancer) but not one of our neuroendocrine cancers is the same. They are all individual as are we! It would be so incorrect of me to say to you “ what worked for me is the absolute treatment that will give you the life I have been given for the past nearly 19 years”. My decisions of treatments were as unique as I, as designed with HOPE as all of you want to achieve. Ten years of the Run for Hope 5K & a few more years of being a part of an educational outreach seminar series, continuing my treatments of Sandostatin, Lanreotide, PRRT, Bland Embolizations, MRIs, CTS, Gallium 68, two liver resections life was good. 6 years ago, a knock at the door of my life once again revealed to me I was once again experiencing the effects of Net, new symptoms were once again evident. More disease in my liver, not huge tumors but the nagging little ones that once again told me “another outbreak”. Great timing actually! PRRT was now available in UC Health in Aurora and I was a perfect candidate! Six months of PRRT and the next few years watching per scans how my body would respond to this treatment. I sought 1st and 2nd opinions, scans from two institutions and reached the same conclusion: After 4 years of monitoring post treatment each MRI, CT scan, Gallium 68 revealed “stable disease and decreasing size of lesions”. That is the news we like to hear and I LOVED HEARING from two physicians whom I trust and admire.
Where are my tomorrows taking me? The year 2023 I reach a pinnacle I never dreamed would come to fruition to me in 2004 at age 60. 2023 I turn “80”! With no evidence of disease per my last scans this past month, knowing the stability I experienced these past 4 years and the realization at my beautiful new generational age of 80, I truly heard and understood per my physicians, “Jeanne, you are free of cancer at this time”. I believe with all my heart we ALL have cancer cells in our bodies whether they be neuroendocrine or other cancer that have no proliferated but the potential is always there. I am no longer going to be a slave to this disease I have fought the past 19 years, instead I choose to say “I don’t know if I am completely cancer free, any cancer…but I do know I am FREE of cancer”. Should my NET reoccur, I will make the decision when that time would arrive, at this time I am going to ride out the rest of my life, very grateful for this journey, very grateful I can lay it aside and say “well done” and finish out these last few years, months or days I have left of my earthly life knowing I have done what God asked me to do with this disease. “How about a Road race and while you’re at it How about education and HOPE!” My direct message from my Lord in my head and in my heart as I drove down Harmony Dr. praying “God what do you want me to do with this disease?”
I move on with the most humble but thankful heart for all He has allowed in my life. I have often shared “I would never ever have signed up for this journey, but I would have not missed it for the world”. How privileged I have been to have met each of you, to have fought the fight and experienced a life with cancer I never knew existed…such a blessing!
One day you will see that it all has finally come together,
What you have Always wished for has finally come to you.
You will look back and laugh and cry at what has passed for you
You will ask yourself, “how did I get through all of that”?
Just never ever give up hope…just never ever quit dreaming.
HOPE – We will NEVER ever let go!
DREAMING – we will never ever quit!
Because of your courage, because of your strength, because your active participation in this HOPE that never gives up…one day, perhaps not in our lifetime, but one day cancer will be NO MORE!
Forever grateful,
Jeanne Lambert