Wondering?
I have a rare disease related to cancer, I have Neurofibromatosis Type I (nfI), and I have tumors, lots of them, over 50,000, they are on every square inch of my body, including the irises of my eyes, the tumors grow on the myelin sheet of the neuron, so basically, everywhere. I recently had my 72nd surgical procedure and I am slated for more, every time I get cut, the grow more, almost on an exponential rate. The most painful are on the soles of my feet and on the glans.
There are clinical trials using experimental chemo but I was told I was too old, I will not give up on that potential treatment.
I work as a licensed clinical professional counselor and love my job.
I did received a "positive test for cancer on a recent surgery", skin cancer.
All I can do is to offer support for others, I am the supportive caregiver for someone who is on chemo.
I was talking with a person, the other day and said, it is the quality of life that matters, self-care and having people close to you, enjoying the things that you are able to.
I do not drink alcohol (last time over 18 years ago) and I do not take pain meds other than over the counter stuff, cannabis does not work and I need to be in my game while at work.
If I can help via email or this platform
Hi
- thank you for sharing with us. I am sorry to hear about your journey with Neurofibromatosis Type I. It certainly does not sound easy, especially if there are potential treatment options out there that are not available to you at the moment. I do want to recognize the positive outlook you've shared and your willingness to support others. It is admirable how supportive and selfless you are as a caretaker, all the while dealing with your own health conditions. Thank you for offering this positivity! I only hope our community here can offer you the same support. I did want to share that we have a sister site for rarer conditions, RareDisease.net, that may be worth checking out as well. Wishing you all the best! -Alexa (SkinCancer.net moderator) Thank you for your response, and the site that you have mentioned has been some help. But for a relatively common disorder (1 in 2500 (3000)) there is not enough research. I have spent countless hours, I can tell you the names of the doctors and experimental drugs of various clinical trials, I still hear them in my sleep at times. If not for me, but for others including my children who have experienced various problems.
