I haven’t been as active with the Wild Love blog for a while because I have been recovering from breast cancer. To make a very long story a bit shorter, I had a bilateral mastectomy May 24, 2023. The good news is lymph nodes tested came back negative, so I did not need any radiation or chemo. However, I had quite a few complications from surgery (seroma, infection from sclerotherapy, truncal lymphedema) that have made the recovery process a much longer ordeal. I am creating a page here on the Wild Love blog to be a depot for thoughts and resources folks might find useful.

Bras, Compression, and Prosthetics

Amoena http://www.amoena.com

AnaOno Bras www.Anaono.com

The Busted Tank www.bustedtank.com

Expand-a-Band Compression Bra https://eabmedical.com

Knitted Knockers: Soft, comfortable knit prosthetics https://www.knittedknockers.org/

Meadow http://meadowforall.com

Medebra https://medebra.com/

Second Nature https://secondnatureonline.net/

Shefit http://shefit.com

Tomboy X https://tomboyx.com/

Family and Medical Leave Act

Guide to FMLA https://www.dol.gov/sites/dolgov/files/WHD/legacy/files/employeeguide.pdf

FMLA Issues https://www.workingamerica.org/fixmyjob/benefits/family-medical-leave-act-issues

Free Resources/Financial Support

The Blessing Box Project https://blessingboxproject.com/

CancerCare provides some assistance with transportation, home care, child care, and copays. They also have a good database of resources that can be searched by zip code: https://www.cancercare.org/helpinghand

The Living Beyond Breast Cancer assistance program has grants to cover living expenses. https://www.lbbc.org/about-us/what-we-do/lbbc-fund

National Breast Cancer Foundation Hope Kit https://www.nationalbreastcancer.org/breast-cancer-support/hope-kit/

The Pink Fund provides 90-day non-medical cost of living expenses. https://pinkfund.org/

More resources from breastcancer.org: https://www.breastcancer.org/managing-life/covering-cost-of-care/charitable-resources#section-resources-for-need-based-financial-grant

Going Flat

Flat Closure Now https://www.flatclosurenow.org/

Flat Retreat. https://flatretreat.org/  

International Flat Day https://internationalflatday.wordpress.com/

Not Putting on a Shirt https://notputtingonashirt.org/

Washington Post article (2022): “Some women want flat chests after mastectomy. Some surgeons don’t go along” https://www.washingtonpost.com/health/2022/06/11/cancer-flat-breasts-mastectomy/  

“The Era of Flat Closure Mastectomy (Is Still Here). Are You Ready?” from Annals of Surgical Oncology (2023). https://link.springer.com/article/10.1245/s10434-023-14078-y

“‘My body, my choice’: A qualitative study of women’s mastectomy with flat closure experiences.” Body Image (2023) https://pubmed.ncbi.nlm.nih.gov/37573764/

“I’m A Breast Cancer Survivor and a Proud ‘Flattie.’ Here’s Why I Said No To Reconstructive Surgery” Women’s Health (2022). https://www.womenshealthmag.com/health/a41266961/breast-cancer-survivor-flattie-essay/

Support

Bonded by Breast Cancer (weekly Zoom meeting for virtual support) https://www.breastcancer.org/community/virtual-meetups

Cancer Legal Resource Center provides info on taking leave for treatment, navigating health insurance, disability, Medicare/Medicaid, housing, estate planning, and more. https://thedrlc.org/cancer/

Gilda’s Club Kansas City https://www.gildasclubkc.org/

Masonic Cancer Alliance Survivorship Services and Resources https://www.masoniccanceralliance.org/resources/survivorship-services-and-resources.html

National Comprehensive Cancer Network: Guidelines for Patients https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients

Resilience Toolbox (Kansas Health System) https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients

Surviving Breast Cancer https://www.survivingbreastcancer.org/

Triage Cancer, which provides quite a few free webinars on legal and practical issues. https://triagecancer.org/

Turning Point, which is a center through the University of Kansas Health System that offers research-based programs and classes for anyone with chronic illness (not just cancer). https://www.kansashealthsystem.com/health-resources/turning-point

Facebook:

Breast Cancer Community: Support, Resources, and Discussionhttps://www.facebook.com/groups/iamnotcancer

Fabulously Flat https://www.facebook.com/groups/328465773967406

Fierce, Flat Forward https://www.facebook.com/groups/1445398828930324/posts/1904932272976975/

Misc. – General

Good tips on dealing with Iron Bra Syndrome https://www.mybcteam.com/resources/iron-bra-syndrome-ways-to-manage-chest-tightness-after-surgery?fbclid=IwAR00agRHOOUBw4iPelMI0GJD6c_z1BPgy3FN2Gr_mai071hl8LjXJSRVYCQ

Healing Breast Implant Illness (quite a few people in my support group are doing “explanting,” so I wanted to pass this on) https://www.healingbreastimplantillness.com/

“Management of Postoperative Seroma: Recommendations Based on a 12-Year Retrospective Study” (2022) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9457167/

“The Use of Postoperative Compression Garments in Plastic Surgery—Necessary or Not? A Practical Review” (2023) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10519563/

Misc. – Shopping This is stuff I used and recommendations from others I’ve been passing on.

Arm pulley (for exercise) https://www.amazon.com/BodyHealt-Overhead-Shoulder-Pulley-Bracket/dp/B0752TTBZ1/ref=sr_1_2_sspa?keywords=arm+pulley&qid=1702480469&sr=8-2-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&psc=1

Arnica tablets https://www.amazon.com/Boiron-Arnicare-Tablets-Homeopathic-Medicine/dp/B006I7IUUQ/ref=sr_1_5_pp?crid=3T12F9XHOW5C5&keywords=arnica+tablets&qid=1702480499&rdc=1&sprefix=arnica+t%2Caps%2C117&sr=8-5

Back Scratcher https://www.amazon.com/dp/B09PZHFC2Z?

Body Wipes https://www.amazon.com/dp/B07MN8ZD21

Curamin (for pain relief) https://www.amazon.com/Terry-Naturally-Curamin-60-Capsules/dp/B00132M2H8

Disposable Face Cloths https://www.amazon.com/dp/B09J4V8TYH?ref=ppx_yo2ov_dt_b_product_details&th=1

Grabber/Reacher https://www.amazon.com/RMS-Grabber-Reacher-Rotating-Gripper/dp/B07PHKY2JW/?th=1

Liquid IV https://www.liquid-iv.com

Mederma PM Overnight Scar Cream https://www.amazon.com/gp/product/B08SS4TJ9C/ref=ppx_yo_dt_b_asin_title_o06_s00?ie=UTF8&psc=1

Miaderm Radiation Relief (I haven’t used this because I didn’t have radiation, but folks in my group swear by it)  https://www.amazon.com/Miaderm-Radiation-Relief-444-Fragrance-Free/dp/B08BJF32G7/ref=sr_1_1?crid=2686A62TGNXEV&keywords=Miaderm+Radiation+Relief&qid=1702480527&sprefix=miaderm+radiation+relief%2Caps%2C191&sr=8-1

Massage Ball Roller https://www.amazon.com/gp/product/B07WV7NM9Q/ref=ppx_yo_dt_b_asin_title_o06_s01?ie=UTF8&psc=1

Mastectomy Drain Holder and Four Pouch Shower Bag- https://www.amazon.com/dp/B0B5LJHYKB?th=1

Mastectomy pillow https://www.amazon.com/dp/B0B5LJHYKB?th=1

Neck pillow https://www.amazon.com/Travel-Pillow-Support-Lightweight-Sleeping/dp/B0B8V6Y2X8/ref=sr_1_6?crid=236BCK5YW87YA&keywords=neck%2Bpillow&qid=1702476535&s=home-garden&sprefix=neck%2Bpillow%2Cgarden%2C113&sr=1-6&th=1

Nuvadermis Scar Cream Gel https://www.amazon.com/gp/product/B09PG91V9Y/ref=ppx_yo_dt_b_asin_title_o04_s00?ie=UTF8&th=1

Pregnancy pillow or u-shaped pillow https://www.amazon.com/Meiz-Shaped-Pregnancy-Pillow-Removable/dp/B01MTNP4K0/ref=sr_1_1_sspa?crid=2UDQS7B78LOJX&keywords=pregnancy%2Bpillow&qid=1702476617&sprefix=pre%2Caps%2C136&sr=8-1-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&th=1

Rinse-free shampoo – https://www.amazon.com/Meiz-Shaped-Pregnancy-Pillow-Removable/dp/B01MTNP4K0/ref=sr_1_1_sspa?crid=2UDQS7B78LOJX&keywords=pregnancy%2Bpillow&qid=1702476617&sprefix=pre%2Caps%2C136&sr=8-1-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&th=1

Silicone scar tape https://www.amazon.com/Silicone-Scar-Tape-Sheets-Strips/dp/B09WFQRS5P?th=1

Sports bras (these worked pretty well with the pads under them) https://www.amazon.com/gp/product/B0BGLGJHF2/ref=ppx_yo_dt_b_asin_title_o07_s00?ie=UTF8&psc=1

Surgical pads https://www.amazon.com/gp/product/B07W7J3Z4X?th=1

Wedge pillow https://www.amazon.com/Lunix-Orthopedic-Comfortable-Adjustable-Sleeping/dp/B085W6LHT9

Vitanica “Opti-Recovery” for post-surgery swelling https://www.amazon.com/dp/B000CL8LAI?ref=nb_sb_ss_w_as-reorder_k0_1_6&amp=&crid=1MS8IMTQY8MYH&sprefix=opti%2Br&th=1