Carolyn has not only worked tirelessly for Combustible Dust standards but even more importantly her own life. I had mixed emotions and some guilt as Carolyn continued to work on the dust issue that is near and dear to my heart but it is on her agenda and one thing I have learned about Carolyn is that she is a fighter who never looses.
As strong a word as love may be I have no hesitation in saying that I love Carolyn, anyone who knows her sincere, gracious and loving spirit can have no other words. She has recently sent a few of us a letter describing her condition and her own plea for us. It seems like little payback for all Carolyn has done but I wanted to at the very least share her words, wisdom and plea with you all!
Carolyn We Love You & Our Hearts & Prayers Are With You!
Dear Friends, family and supporters,
Well, this is the e mail I had hoped one day soon to be able to write to all of you. We are at the nearly 5 month point in my treatment that started on January 11th, 3007. At that time, my Dr said this would be a 6 month plan and we would evaluate how it was working and decide if the cancer was responding and if my body was beginning to make its own blood or not. So last Thursday I met with her and we did the evaluation a little early cause no one could wait any longer. Here are the results.
The cancer, as far as we have been able to deduce with CT scans and PT scans and bone scans is only in the bones and not in the soft tissue. While I have lesions in the liver, no one thinks they are cancer. No one recommends doing a biopsy however as they are microscopic in size and have not changed in almost 2 years.
The bone cancer is very unhappy and retreating due to the chemo and Herceptin I have been taking these past months. The response has cleared out room in the bone to not destroy the platelets and Red blood cells my body has received through transfusions and is making now on its own. The bone marrow we believe is regenerating but we will do a bone marrow biopsy next week to see how much. Empirically, however, because I no longer need the blood transfusions I was getting, I have to be making my own. I am now getting 1-2 units about every 2 weeks. This is down from the 6 red blood and 3 platelet units I was getting up until the end of March. Don’t let this fact escape us. It is absolutely remarkable!
The best thing to tell you is the prognosis. On Dec 28th 2007, I was told clearly that I had only weeks to live. I know this was right cause 2 weeks later I was in the hospital with blood counts so low they were deadly. Refusing to consider chemo therapy due to my weakened condition, my oncologist in Chicago was counseling me on how to end things with my husband and family, and that I needed to get my affairs in order.
Most of you know the rest of the story, but suffice it to say that God had orchestrated my future and I ended up in Barnes-Jewish Hospital in St Louis where my daughter and husband and grandchildren are. The oncologist on call was a noted breast cancer specialist dealing almost exclusively with bone cancer who agreed to take my case. The 6 months of treatment here could only happen because we had the use of my son-in-laws parents unused but furnished condo 2 blocks from the hospital. God is a good planner. He thinks of everything!
To God goes the glory here. All of you have prayed for me and sent me encouragement and cards to numerous to count. You have made me blankets, prayer shawls and books and notes of remembrances to show your love. How could I ever thank you all enough? God knew from time to time I would become discouraged and tired of the routine but just then one of you would send me something or come and visit. What a blessing you all are in carrying out God’s plan.
I am now sitting saying “Why” did he test and save me? What for? I know this cancer will someday still get me and He will finally call me home. Maybe this is the answer. My oncologist would like me to help her raise funding for her research by telling my story to others who can help with the ongoing war on cancer. That is right up my alley!
Here is an example: Only a year ago Herceptin was approved for use in the treatment of Hart 2 cancer cells. While we knew my cancer was estrogen and progesterone receptive, and the previous treatment attacked these cells, it was still alive and growing. In Feb we found a third cell component we did not know was there; it was Hart 2 positive. This is a gene that is in the cancer cell itself but is resistant to all other treatment. Until research found this magic bullet, nothing would work. Now we have this treatment that kills the Hrt2 cancer cell. One year ago this was not available.
We believe now 2 years of relatively good health can be expected with as much certainty as anyone can give in this cancer business. 5 years is a good possibility because of the therapy in the pipeline that addresses things never touched by former chemo. Research here is critical for people like me. Funding is essential to those who come behind me and will need these new tools. 10 year is not now achievable but is not out of the question but continued research is needed to make sure the new drugs and treatments keep addressing the mysteries of today.
Did you know that the Bush administration just cut 110 Million from the National Cancer Institute budget that is primarily funds research? This is a devastating blow to the most promising research now in the works. Millions of people like me depend on the results of this research to have a future if it is God’s will. This summer and fall there will be thousands of “Relays for Life” and “Race for the Cure” events. I am going to participate in one here in St Louis on June 21st. Not bad for one who was supposed to be dead 5 months ago! I would encourage you to join a team, get up your own team or just register and do the fun walk with thousands of others. You can find all the info on the Race for the Cure web site or other sites where cancer research is supported. You can also write your Congressman or Senator to protest these budget cuts.
God be praised and thanked in all things but in this live giving miracle that you helped create for me through your love and care. Miracles do happen and I want you to know that I am one. I am doing well, happy and treasuring every living second He is giving me. His will be done! My job now is to be obedient. I know he will make clear what job he has for me to do soon. He opens the doors and He simply asks us to walk through them.