This is a place for you to share your stories of how your cancer diagnosis affected you and your family emotionally and psychologically. Please add your story here!
After more than two years of knowing something wasn't quite right, I was diagnosed in January of 2006 with follicular Non Hodgkins Lymphoma, or fNHL. My daughter was a senior in high school, and I remember wondering if I would be around until June to see her graduate. After the diagnosis, I went through a battery of tests and talked about options with my oncologist. I became my own advocate, researched available treatment options, and did a self referral to Mayo Clinic for a second opinion. The oncologist I spoke with at Mayo told me about a clinical trial he thought I would qualify for, comparing two methods of administering a drug called Rituxan. Rituxan is a monoclonal antibody that targets the “bad” cells without wiping out the entire immune system. I did qualify for the clinical trial, and had my first round of Rituxan treatments in July of 2006.
During the treatment phase, I felt that I was taking control of the situation. However, once I completed the four rounds of Rituxan, it was as if someone had cut the string on my helium balloon. I felt myself sliding farther and farther away from my family and friends, wondering if the treatments had worked, wondering if I could beat the odds and outlive the statistics. By the fall, Dennis had become very concerned.
June of 2006 marked our 25th wedding anniversary. We had put off any celebration because of the uncertainty of treatments. I had a scan about 3 months after completing the Rituxan regimen and was told there was no evidence of disease. We made plans to take a trip to a warm place in the winter to celebrate our anniversary. We decided on Puerto Rico since we wouldn't need passports because it's a U.S. territory, and it is inexpensive to fly there.
That week in January of 2007 was a lifesaver for me. I was able to get my mind off of everything that had happened over the past year. It was a “restorative escape” for me. We loved Puerto Rico, so much so, in fact, that we bought a piece of property that summer, and by the summer of 2010, we had built a vacation cabin.
Now we are taking the next step. We want everyone who has had the experience of being diagnosed with cancer to have the chance to have a restorative escape of their own. Esperanza Renovada will help that dream become a reality.
I noticed a lump in my neck and got a fine needle biopsy which was inconclusive. I used that as an excuse to ignore it for another nine months. My life was simply too busy, I said to myself. Work, taking care of my dad, two kids, a beginning divorce, moving..........
By the time I couldn't ignore it anymore, the lump was pushing on my esophagus. I had small lumps across my clavicle . And I was at the lowest weight I'd been since school. After my dad passed, I felt I needed to get it taken care of. By then, I was diagnosed with Difused Mixed B cell Non Hodgkin's Lymphoma 4th stage b. It was in my neck, abdomen, left lung, and progressed to my brain. We found that out with seizures starting.
I could only do 4 rounds of the gold standard therapy, CHOP, as it quickly damaged my heart. I got down to 95 pounds and I am 5' 7". I did end up with small radiation burns on my head that made wearing a wig impossible and every chance I got I just went bald. This was MY world now. So people had to adapt to me, not the other way around, I thought. I had to try a few regimens and also Rituxan . My fight lasted five horrifying years.
October 15 2014 it has been ten years. HEERS TO HOPE!
My kids were amazing thru this. Later, they developed PTSD and had to cope. I've lived long enough to see my kids grow and see 5 grandchildren . I am blessed.
I've also got latent long term side effects haha. A pituitary tumor on watch and wait. I am paralyzed from contracting Guillian Barre cause my immune system is shot. I did not fully recover. I still have seizure disorder and brain deficits.
All of this might have been avoided if I had had the fortitude to get it taken care of right away. A place like this lodge being built would have been a godsend for me and my two kids.
Won't you help us help others ? Please give what you can, lives depend on you and me acting.
Here is a short version of my story:
ReplyDeleteAfter more than two years of knowing something wasn't quite right, I was diagnosed in January of 2006 with follicular Non Hodgkins Lymphoma, or fNHL. My daughter was a senior in high school, and I remember wondering if I would be around until June to see her graduate. After the diagnosis, I went through a battery of tests and talked about options with my oncologist. I became my own advocate, researched available treatment options, and did a self referral to Mayo Clinic for a second opinion. The oncologist I spoke with at Mayo told me about a clinical trial he thought I would qualify for, comparing two methods of administering a drug called Rituxan. Rituxan is a monoclonal antibody that targets the “bad” cells without wiping out the entire immune system. I did qualify for the clinical trial, and had my first round of Rituxan treatments in July of 2006.
During the treatment phase, I felt that I was taking control of the situation. However, once I completed the four rounds of Rituxan, it was as if someone had cut the string on my helium balloon. I felt myself sliding farther and farther away from my family and friends, wondering if the treatments had worked, wondering if I could beat the odds and outlive the statistics. By the fall, Dennis had become very concerned.
June of 2006 marked our 25th wedding anniversary. We had put off any celebration because of the uncertainty of treatments. I had a scan about 3 months after completing the Rituxan regimen and was told there was no evidence of disease. We made plans to take a trip to a warm place in the winter to celebrate our anniversary. We decided on Puerto Rico since we wouldn't need passports because it's a U.S. territory, and it is inexpensive to fly there.
That week in January of 2007 was a lifesaver for me. I was able to get my mind off of everything that had happened over the past year. It was a “restorative escape” for me. We loved Puerto Rico, so much so, in fact, that we bought a piece of property that summer, and by the summer of 2010, we had built a vacation cabin.
Now we are taking the next step. We want everyone who has had the experience of being diagnosed with cancer to have the chance to have a restorative escape of their own. Esperanza Renovada will help that dream become a reality.
I noticed a lump in my neck and got a fine needle biopsy which was inconclusive. I used that as an excuse to ignore it for another nine months. My life was simply too busy, I said to myself. Work, taking care of my dad, two kids, a beginning divorce, moving..........
ReplyDeleteBy the time I couldn't ignore it anymore, the lump was pushing on my esophagus. I had small lumps across my clavicle . And I was at the lowest weight I'd been since school.
After my dad passed, I felt I needed to get it taken care of. By then, I was diagnosed with Difused Mixed B cell Non Hodgkin's Lymphoma 4th stage b. It was in my neck, abdomen, left lung, and progressed to my brain. We found that out with seizures starting.
I could only do 4 rounds of the gold standard therapy, CHOP, as it quickly damaged my heart. I got down to 95 pounds and I am 5' 7". I did end up with small radiation burns on my head that made wearing a wig impossible and every chance I got I just went bald.
This was MY world now. So people had to adapt to me, not the other way around, I thought.
I had to try a few regimens and also Rituxan . My fight lasted five horrifying years.
October 15 2014 it has been ten years. HEERS TO HOPE!
My kids were amazing thru this. Later, they developed PTSD and had to cope.
I've lived long enough to see my kids grow and see 5 grandchildren . I am blessed.
I've also got latent long term side effects haha.
A pituitary tumor on watch and wait. I am paralyzed from contracting Guillian Barre cause my immune system is shot. I did not fully recover. I still have seizure disorder and brain deficits.
All of this might have been avoided if I had had the fortitude to get it taken care of right away. A place like this lodge being built would have been a godsend for me and my two kids.
Won't you help us help others ? Please give what you can, lives depend on you and me acting.
Thanks for reading
Sara