Early 2017 -- Sent a saliva sample to 23andMe for DNA testing. I opted for the "Health and Ancestry" kit (twice as expensive) so that I had access to information on my genetic health risks, carrier status, traits, my DNA relatives, and more. But mostly I was interested in genealogy.
 

April 2018 -- On my birthday, I received an email from 23andMe stating that the FDA had just given them approval to release DNA results to their customers about the 3 most common genetic variants for breast cancer and ovarian cancer: namely, 2 variants on the BRCA1 gene and 1 variant on the BRCA2 gene. I decided to look at the report (you always have the option to NOT reveal your results), thinking I surely didn't have one of those variants.
 

April 2018, cont. -- I started researching what this result means and what I might do about it, called a lot of family members to ask about their health histories and BRCA test results, and tried to grapple with the fact that I now know I am at highly increased risk for breast and ovarian cancer, and elevated risk for pancreatic cancer and melanoma. Called my OBGYN (Dr. Jessica Berger-Weiss) to try to get an appointment and they told me I had to wait until July!!
 

April 30 -- Remembered that I could email Dr. B-W through an online portal and did so. She emailed back immediately and said she could see me at 8am the next morning. Thank God!
 

May 1 -- Doctor visit: Talked to Dr. B-W for 45 minutes and had blood drawn to confirm the BRCA1 result. She talked to me about possible surgery to remove my ovaries and Fallopian tubes and to have a prophylactic bilateral mastectomy and reconstruction. YIKES. She recommended that I next talk to Dr. Linda Burrell, an oncologist/hematologist, assuming my result was confirmed.
 

May 22 -- After an anxious 20 days, the blood test confirmed I had the BRCA1 variant. I was pretty sure it was going to be positive because I called my paternal 1st cousin and she told me she had the same variant that 23andMe told me I had. Spoke with Dr B-W and scheduled surgery with her for July 12 to have my ovaries and Fallopian tubes removed.
 

May 24 -- Doctor visit: Met with Dr. Linda Burrell, the oncologist/hematologist to discuss my risks and next steps. Really liked her a lot. She writes me an order for a breast MRI, and recommends a couple of breast surgeon/plastic surgeon teams for me to talk to.
 

June 4 -- Had the breast MRI at Washington Radiology. Not nearly as bad as I had feared. Two years ago today, my Dad passed away from a hemorrhagic stroke a month before his 86th birthday. Can't believe it's been two years. I miss him every day.
 

June 5 -- Doctor visit: Met with my first plastic surgeon, Dr. Anita Kulkarni, who came highly recommended from both Dr. B-W and Dr. Burrell. Got a call from Dr. Burrell that my breast MRI showed no cancer. YAY!! Around dinner time, I got on a  plane to Paris to attend an art workshop in the south of France, among other things. The trip was planned a long time ago. Now I call it "Distraction Tour #1".
 

June 19 -- Returned from France. Great trip! I only had a couple of mini-breakdowns when I allowed myself to think about my upcoming surgeries. Really enjoyed being creative with 2 wonderful teachers and 9 other students in a home built in 1680 in a rural village. Spent a few wonderful days before the workshop with my pal Debra in Paris.
 

June 21 -- Doctor visit: Met with genetic counselor Joyce Turner and talked about my cancer risks. I wanted to make sure I fully understood what the BRCA1 diagnosis meant for me and my family.
 

June 22 to July 3 -- Distraction Tour#2! We flew to Salt Lake City, then drove the next day to Victor, ID for a wedding. Also visited, hiked, and camped in Yellowstone Park and hiked in the Grand Tetons. Stayed a few days with the bride's parents in Wilson, WY, then visited friends in Pocatello, ID before flying back home from Salt Lake. Another great trip!
 

July 5 -- Doctor visit: Visited my regular physician for a pre-op clearance physical, in preparation for surgery on July 12. Then saw Dr. B-W for my annual exam and to talk about the surgery.
 

July 10 -- Doctor visits (2): Met with Dr. Pam Wright, breast surgeon, in the morning. Learned that the plastic surgeon she often teamed with and who I talked to on June 5, Dr. Kulkarni, is no longer available! Well, at least the info she gave us was useful... Really liked Dr. Wright and will likely go with her. She gave me the names of 2 other plastic surgeons she highly recommends and who she has done many surgeries with. Then, in the afternoon, met with plastic surgeon Dr. Ali Al-Attar, part of another team of doctors I am interviewing. He spent about 90 minutes with us. It was interesting to get another plastic surgeon's take on reconstruction, but he said some different things than the first one, so that was confusing.
 

July 11 -- Doctor visits (2): In the morning, met with plastic surgeon Dr. Coleman Brown. Really liked him a lot and will likely go with him. After talking to him, I became interested in having a breast reduction a few months before the mastectomy/reconstruction. This is the only way I can keep my nipples. In the afternoon, met with Dr. Eric Oristian, who works with Al-Attar. By this time, I've learned so much I didn't have as many questions. The visit confirmed for me that I still want to go with Dr. Wright.
 

July 12 -- Surgery #1: Had my bilateral salpingo-oophorectomy (removal of ovaries and Fallopian tubes). It was an outpatient/laparoscopic procedure. I was in surgery for less than an hour!
 

July 17 -- Drove for the first time since my surgery. Went to see my Mom and take her out to lunch. On the way there, Dr. Berger-Weiss called to give me the good news that no cancer was found in the ovaries and Fallopian tubes. YAY! I wasn't expecting there to be cancer, but it is still a relief to know for sure.
 

July 19 -- Doctor visit: Met with plastic surgeon Dr. Douglas Forman. He is the 3rd plastic surgeon and each of them has a different philosophy about what they recommend. Confusing. He seems very competent, but I am pretty sure I'll pick Dr. Brown.
 

July 20 - 22 -- On Friday, Eli returned from his wonderful 6-week trip to Europe, where he traveled alone for a couple weeks and then hiked in Bosnia for 3 weeks with two friends. Saturday, we drove him to Camp Moshava to work for 2nd session and then headed to Philly for a very short getaway. Enjoyed a nice Thai dinner, a morning at the Philadelphia Museum of Art, and a nice lunch with old friends Herb and Lynn. On the way home, we stopped in Wilmington, DE, to see my friend and bead artist teacher Nancy. Fun!
 

July 24 -- Dr. Brown called and spoke with me about our insurance company saying they wouldn't cover a breast reduction, and how he is going to appeal the decision. He also answered all my questions that I was planning to ask him during another visit to see him. Really like this guy and have chosen him as my plastic surgeon. The insurance issue may push back my tentative Aug 6 date for the breast reduction.
 

Aug 1 -- Found out that United Healthcare won't even let Dr. Brown have a peer-to-peer conversation to appeal the denial of coverage. Decided to do the breast reduction anyway, since a written appeal is likely to take a month and might end in another denial. Just want to get this show on the road. His office sent me a quote late in the afternoon. Dr. Brown gave me a 30% discount on the procedure, but there is no way to negotiate with the surgery center for their fees and the anesthesiologist. Gulp.
 

Aug 2 -- Spoke with Health Advocate, a perk for employees at the law firm where Larry works. They were able to negotiate with Dr. Brown's office and dropped the procedure fee nearly $1,000! It never hurts to ask. Total price: $6,500. YIKES. Still, it's the decision that is best for me. Breast reduction surgery date: Monday, Aug 6. Likely mastectomy date: beginning of November.
 

Aug 6 - Surgery #2: Breast reduction! Part of a several stage mastectomy and reconstruction. It was a 2.75 hour outpatient surgery. By having a breast reduction, my nipples are now in the right place for a "nipple-sparing mastectomy" which will happen in about 3 months. Also, with less skin and breast tissue there, the mastectomy will be a slightly less involved operation. The doctor removed a total of about 2.5 pounds of breast tissue. Wow.
 

Aug 7 -- Doctor visit. I was able to take a shower this morning since I have waterproof tape over my dressings. However, I noticed that the dressing under my left breast was soaked through, not actively bleeding, but moist. Talked to the nurse who suggested we try to change it ourselves. Quickly realized we weren't sure if we were doing it right and so drove to Dr. Brown's and he changed it. Doing pretty well so far. No longer on the strong pain meds, but feel achy and swollen.
 

Aug 13 -- Doctor visit. Drains out! Wahoo - so excited to get those pesky drains out of me and not have to deal with measuring and disposing of the fluids. Plus, I had to sleep on my back for a week because I had to wear a special apron to hold the drain bulbs. Dr. Brown also took all the bandages off and I got to see my scars and nipples for the first time. I'm still swollen and a little bruised, but overall healing well. We talked about the mastectomy (likely Nov. 1) and that my breasts will end up about the same as they will be when I'm healed from this surgery. If that's true, I'll be very happy.
 

Aug 20 -- Doctor visit: Two weeks post-surgery. Healing going well, still swollen and somewhat bruisey. Dr. Brown gave me to OK to sleep without a bra and to remove the Steri-strips, and said I could return to rowing at the 4 weeks mark. Yay! At the end of the visit, I asked Dr. Brown if he would be willing to help me file an appeal to United Healthcare to reverse the denial of coverage for the breast reduction. He agreed to do this, which requires a lot of work for him and his staff. Really appreciate this, as that surgery cost me $7,200. I told him I would write my own letter that they could include with the appeal when they send it in. Also, asked Dr. Brown if he had a patient similar to me who he thought might be willing to talk with me about her experiences with breast reduction and then mastectomy.
 

Aug 26 - Spoke with one of Dr. Brown's patients for an hour and a half! She was delightful and willing to share a ton of information and great tips. I emailed Dr. Brown to thank him for facilitating this and offered to be on call for any of his patients who wanted to talk to someone like me. Also gave him the link to this blog and told him to feel free to share it. I have been able to speak with 5 or 6 people who have dealt with a BRCA+ diagnosis and surgeries and it has been so very helpful.
 

Aug 27 - Spent all day working on my appeal letter to United Healthcare. I had been procrastinating, and felt a great sense of relief when I finished it and sent it to Dr. Brown's office. Then FINALLY got confirmation that my mastectomy date is Nov. 2.
 

Sept 4 -- Doctor visit: Four-week check up with Dr. Brown. All continues to go well with healing. I have been using a product called Biafene in the morning and Maderma at night on my incisions to aid healing. I expressed some concern that my nipples are slightly different in size and Dr. Brown said he could fix that at my last surgery (to swap expanders for final implants), likely in Feb.
 

Sept 11 -- Started on an antibiotic (Cefadroxil) because I noticed that after biking 41 miles on Labor Day weekend and then rowing 2 days in the week following, I was developing an infection. Underneath my left breast, at the inverted "T" incision (which is a stress point), the skin had opened up a little bit and I think bacteria got in there. I was starting to have pain in that breast as well as a large blotch of red, warm skin. I was concerned about staph or MRSA infection. Dr. Brown was able to call in a prescription for me after I sent him photos. I love how responsive he is to my emails!
 

Sept 14 -- Got a flu shot and my first Shingrix shingles vaccine. Had to drive to a faraway CVS because the ones near me never have Shingrix in stock! Got the shingles in my left arm and the flu in my right. Felt pretty lousy for a couple of days, but was expecting that since Larry experienced the same thing. Now I just have to remember to get the 2nd Shingrix shot in a few months.
 

Oct 2 -- Had tried to reschedule my United Healthcare appeals hearing to this day so that Dr. Brown could be on the call. Since the Appeals Dept is unreachable and 6 calls to Customer Service were not very helpful, I went to Dr. Brown's office to have us both on speaker, but...UHC didn't call. Fortunately, the next day the Appeals person called me and now a real conference call will happen on Oct. 8. Fingers crossed that they will reverse their decision NOT to cover my $7,200 breast reduction.
 

Oct 8 -- Appeals hearing happens. Dr. Brown does most of the talking. United Healthcare facilitator and doctor don't have all the materials in front of them because something went wrong on their end AGAIN. However, Dr. Brown says let's move forward anyway because it was so hard getting the call coordinated in the first place. I think it went well, but who knows what will happen?
 

Oct 11 -- I call UHC to make sure the doctor's materials made it into the hands of the appeals decision maker and find out that they OVERTURNED their original denial of coverage for my breast reduction!!!! All my hard work and persistence paid off. Amazing!!! It will take a while to process the claims from my doctor, the surgical center, the anesthesiologist, and the pathologist, but I will eventually get most of my money back. Yahoo!