Tuesday, June 23, 2009

A great organization for people like me - you can help

Today I had my intake meeting at a local cancer support organization, WeSpark. I'm fortunate that this organization, which is privately funded solely through generous donations, has an office near to me. I took my mom along (she has to drive me since I'm not cleared for driving yet) and I'm glad I made her come inside because they have caregiver support groups and resources too - things we can actually do together while she is here visiting and helping out. I am amazed by this generous service and all they have to offer free of charge to cancer patients, survivors, and caregivers. If you are a blog follower that has wondered how you can help me and others like me, please consider donating to this organization or one like it near you. The sense of relief and comfort I felt going there today and knowing that I can participate in all these wonderful offerings they provide to help me through treatment and through this battle was so priceless today. Tomorrow is a BIG day. We will be at UCLA most of the day. First we'll meet with Dr.Glaspy - the head honcho of oncology, the guru of breast cancer, and the wizard of leading edge cancer research (or so I'm told haha). He will be directing my treatment plan. I'm excited and nervous. After Dr.Glaspy's meeting we head up to Plastics to visit Nurse Tammy who works for Dr. McHotty so she can look at my swelling to make sure it's "normal" and have her look at my remaining drain to be sure all is OK - we're not expecting this one to come out yet - not til end of the week - because it's still putting out more than the threshold amount of fluid -ick. After Plastics, we head over to the UCLA Familial Cancer Registry & Genetic Evaluation Program where my family's cancer history gets mapped out and documented and I give blood for the BRCA gene test to determine if I'm a carrier. If it turns out to be positive for either of the BRCA gene mutations which greatly increases a person's risk of developing breast and ovarian cancers, I will plan to have my ovaries and fallopian tubes surgically removed after my cancer treatment is completed. I already need to have 2-3 more surgeries for breast reconstruction over the next year, so I would plan to combine one of those surgeries with the modified hysterectomy to limit my "down time". If I don't have either of the two known gene mutations, I might have my ovaries removed anyway since ovarian cancer is very difficult to detect and spreads rapidly to organs nearby. But I digress... While at UCLA I also need to hunt down paperwork - an order for a brain MRI (to rule out anything there since the PET/CT doesn't look at the brain - which I did not know before), and my FMLA/disability paperwork that the surgeons are working on for me. Needless to say, it's going to be a looooonnnnggggg day. Wish us luck! :)

3 comments:

Denise Brown said...

We will be with you in spirit, as always!

Merrilee said...

Good luck! I know you'll end up coming home full of even more HOPE!

My mom ended up getting a hysterectomy a few years ago, and they did it vaginally so there were no exterior wounds... She was given 2 weeks off work but she felt GREAT after 3 days, so for her it was an extra vacation! Hopefully if you do need to have your ovaries removed you have a similar experience ;)

Anonymous said...

The BRCA site was fascinating. I can't believe all the different moving parts to this, and you're in the middle of all of them! I'm really happy to hear the details of how this is all coming together for you, with everyone on the same page, and no confusion or difficult choices at this point that you certainly don't need. Our prayers are being answered!