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A Profile of Hope: Paula’s Story
 
In Paula’s own words . . .

On 09-09-09 or as I sometimes refer to it, "nine to the third power day", I was told I had cancer. Not just "any" cancer either. "The kind you don’t want" kind of cancer, as Eric, my fiancé at the time would say to people who quietly asked. I remember asking myself when first hearing him say this, is there a kind of cancer you do want?"

Nonetheless, my "kind" was of the non-Hodgkin lymphoma variety, specifically, Mantle Cell Lymphoma. It's one of the rarer blood cell subtypes and a Google search at the time revealed a not so great prognosis and limited treatment options. Yup, this cancer was the "kind" I definitely did not want! But, since we don’t get to choose our cancers, my focus became to learn as much about MCL as I could!

I really didn’t fit the typical MCL patient. I was younger, female, and my symptoms came about very aggressively over the course of a single month. My symptoms, however, were classic; an entirely enlarged lymphatic system including a significantly enlarged spleen, weight loss, night sweats, and then fever. These can also be symptoms of mononucleosis, which was an incidental diagnosis given and had everyone breathing a sigh of relief until, after a few more weeks of getting much sicker, a hospital stay and biopsy finally proved the initial thought of lymphoma.

When I was admitted to the hospital on 09-14-09, I didn’t have time to blink or think before my first regimen of chemotherapy was being administered. The chemo protocol my hemo/onc recommended for my aggressive disease (Stage IV B) was R-Hyper CVAD. It's a high dose chemotherapy done as an inpatient. There are 2 courses – A and B. Course A is a 6-8 day hospital stay and course B is a 3-4 day stay. The schedule was for rotating courses every 21 days. Over the next 6 months, I completed 5 total; 2-A and 3-B. I had two additional inpatient stays due to neutropenic fevers. One started on Christmas Eve of 2009 and ended on January 3rd of 2010.

During all of this there was some good news too. Great news, in fact! I did a double bone marrow biopsy mid December, 2009 after 3 chemo treatments. All results came back negative; no more evidence of cancer in the bone marrow. How ecstatic I was then and now, so full of HOPE that this outcome shall continue for a very long time! 

While recovering from the neutropenic fever, I got an "all systems go" and, from my hospital bed, harvested 11.5 million stem cells on January 2, 2010. They went into deep freeze waiting to be used for my Autologous Stem Cell Transplant on a date TBD. In the meantime, all other restaging tests proved me to be in complete remission!

On 03-11-2010 I was once again admitted to the hospital. I received 5 more days of some of the most toxic agents available and on 03-19-2010, St. Joseph’s Day in the Catholic religion, with family and friends present; my “cancer free” cells were blessed and infused back into my awaiting empty bone marrow. After my infusion, a few of the next 10 days were the toughest. I managed with the help of some of the finest physicians and nursing staff ever assembled in one place. These angels, on those few dark days, were my life preservers. And I clung to them until the storm passed. I knew it would.

On April Fool’s Day, (no joke) I was discharged home to continue my recovery and learn to live a life that now would have a very new "normal." For me, this was one of the most challenging aspects of being a survivor. There were many "news", but few if any "normals", at least for the next 10 months or so. Counts that crashed many months after being stable, 3 additional hospital stays, and a host of unexpected side affects that left me HOPING week after week that my “new normal” would soon present itself. Eventually, it did. My scans in March of this year (1 year post transplant) were still clean – “no evidence of disease” I was told. I.LOVE. NED!

My journey has been long and sometimes difficult but despite everything, I have surprised myself with an array of lessons learned along the way. Crying is OK and many know I did plenty of it – sometimes due to meds and other times just because. "Weeping Willow" I would call myself then, but now, it's the "Warrior Woman", as the new name my friend has given me. I also learned my body, and I emotionally, can tolerate much more than I was willing to give it or take credit for. Furthermore, chemicals can make for better LIVING if that's what one needs in order to continue doing so!

Being one's own advocate during all of this was empowering for me and still helps in managing my life that was totally and sometimes continues to be somewhat unpredictable. Unpredictability has taught me patience and tolerance. It has forced me to live a life where perfection has lost its highest priority and has been replaced with gratefulness for the simple pleasures, the little accomplishments or the big ones and all the imperfections that may come with them. Acceptance of this has helped lessen my anxiety and makes for better days filled with serenity and peace of mind. The 'Serenity Prayer' has now become part of my everyday thought process because I now accept those things which "I cannot change."

I have made it through, formidable as it was, and I am now a survivor - but not without the unwavering help of my mother, the emotional support of my daughter who could always bring a smile to my face and laughter when I needed it most, and never to forget Eric, who gave so much of his time to me that I could never repay that debit. I offer him a heart full of sincere gratitude. On those dark days, I would think of them and especially my Mom. I was not going to allow cancer, even this “kind”, to force her to experience the loss of her other daughter. I fought and now survive for me but also for her!

Now, I am happy when I can be of help to others who may be just starting their journey or learning that they will need a Stem Cell Transplant. I have become an LRF volunteer because if sharing my experiences helps ease the anxiety of newly diagnosed lymphoma fighters or someone waiting to have a Stem Cell Transplant, it is a privilege to do so. Receiving updated emails from my MCL buddies makes my days all the brighter. They inspire me to want to do more. Listening and communicating positive and encouraging words I hope help my fighter friends in some way!

I have also recently joined LRF's Chicago Chapter and look forward to working with the Advocacy program. The goal is to make sure awareness and funding for blood cancers continue. Before I was diagnosed, I honestly can’t say I ever heard the words lymphoma or blood cancer. Now, I want to shout it from the rooftops and talk about it to our lawmakers and anyone who will listen! Funding for research and collaboration need to continue and become a top priority. If I can assist in achieving this goal, again it is a privilege to do so.

One thing that remains constant is that I always have HOPE! Hope for me, the newly diagnosed, the fighters and the survivors! Hope for the future and for cures!